February 28th, 2012 §
I remember the old days.
I remember the way my father looked at my mother.
I remember when they were married and living together.
Those days are no more.
……………
I remember when they danced in the living room as my brother and I watched.
I remember my mother clicking her tongue to the beat, waving her arms in small circles, wrists cocked, like windshield wipers gone awry.
I remember my father smiling, biting his lower lip, chin extended outwards, hopping and bobbing to the beat.
……………
I remember when he would ask me, “Isn’t she cute? Isn’t she adorable?” and playfully pat her on the rear.
I remember the way she said her heart went pitter-patter when he walked in the room.
I remember when she listened to talk radio as she cooked, the wire antenna taped to the underside of a cabinet so that her favorite station’s reception would be strong. Masking tape marked with surgically precise lines identified the stations she would tune to.
The radio always got turned off when he pulled in the driveway.
……………….
I remember falling asleep in the backseat of the car.
I remember waking up, startled, not realizing where I was.
I remember them twisting from the front seat to say, “Surprise! We brought you to see the panda bears at the National Zoo!”
I didn’t think life could get any better than that.
……………….
I remember the fights. The yelling. I remember newspapers on a kitchen chair, shoes on the table. I remember so much more.
I remember their wedding anniversaries on Christmas Day. Nothing open, nowhere to go, no good way to celebrate.
I remember cardboard cartons of Chinese food.
……………….
I remember the beginning of the end.
I remember their being close to the precipice once before, my relief that it went on.
I remember it finally being the end.
……………
There is a small guest room in the house that I now call my father’s. It used to have a crib in it; now, as my three children have grown, it’s been replaced with a twin bed.
I know that in the closet there used to be a small white leather briefcase.
Inside that briefcase is a Viewmaster and two rows of dual-image slides. These are my parents’ wedding photos: three-dimensional images that get popped into the Viewmaster and looked at through light.
I haven’t looked at them in years; suddenly, it’s the only thing I want to do.
My mother’s brother, so young in those images, died in his 40s. My father’s brother, now dead too. Neither has living siblings, nor living parents. There are so few of us in the family left now.
…………….
I see the disbelief, how people are unwilling or unable to accept that something that lasted for so long is over.
It scares them.
Like cancer that recurs after a decade, it means we are vulnerable even after a seemingly safe waiting period has elapsed.
Divorce can happen after 50 years.
……………..
“They’ll get back together,” one of my doctors insists whenever I see him for an appointment.
“No,” I say, “they won’t.”
…………….
“Did you see it coming?”
“Do you think they’ll reconcile?”
“What happened?”
“Are you surprised?”
…………..
“You’re the writer,” my mother says, “Maybe you’ll write about this.”
……………
I took my mother’s wedding ring out of the drawer this morning.
She gave the ring to me years ago when Dad eventually bought her the diamond one he hadn’t been able to afford when they got married.
I rubbed the ring, imagining the two young people who stood exchanging vows.
Hopes. Dreams. Compromises.
A lifetime together. Their lifetimes together.
Until now.
I know my mother has a receipt for that ring, 50 years old, in a file.
I know where that file was when she lived in the house.
But now she doesn’t live there anymore.
Her papers are in boxes in storage.
Somewhere in a box in my mother’s apartment building there is a receipt for the ring my father bought for her.
That paper will outlast their marriage.
……………
I remember when that ring proudly announced to the world that my parents were happily living together.
Those days are no more.
December 14th, 2011 §
My mother retired a few years ago. For much of her adult life she was a psychologist specializing in grief and loss, death and dying. She wrote her dissertation on the impact a child’s death has on family dynamics. She used a case study method, doing in-depth interviews with surviving family members of various tragic events that happened. In one case, a house fire killed a child; in another, a baby died of SIDS.
They were heart-wrenching stories, and even as a child I could tell this was “heavy stuff.” Of course I couldn’t comprehend the magnitude of a parent’s love for his/her child until I had my own; but, I realized in reading the transcripts that grief is a multi-faceted emotion. And that loss is a process.
Having my mother work in this somewhat unusual profession was excellent training. I learned at an early age so much about sympathy, empathy, guilt, regret, and the discomfort our society feels about the subject of death. Despite the fact that it is the one thing that unites us all, the one common thread in all our lives, most people just don’t want to explore the subject of death. It makes people uncomfortable, makes them squirm, and almost universally makes people change the subject.
When you have had a death in the family, people don’t know what to say. In fact, it is likely many people won’t bring it up. Often, they worry that they will be reminding you of the tragedy, as if you have forgotten it. Anyone who has experienced a death of a loved one knows this isn’t true. The deceased person is never far from your mind, from your heart. And more often than not, you want to talk about that person. My mother taught me this. She taught me that people will never be upset if you remember and talk about the person they loved; it means their legacy lives on. Everyone wants to be remembered. You honor this desire when you talk about a deceased person.
I have said many times that growing up with my two parents was the best training for my string of illnesses through the years. While cancer has been the most serious, it has by no means been the only medical challenge I’ve had. But having a surgeon for a father and a psychologist for a mother was perfect.
I was able to digest complex medical information. When surgeons told me what needed to be done I could weigh my options methodically. I could weigh options of treatment and ask good questions to determine the best course of action for me. I could read pathology reports with ease. And then I could be insightful into my emotional response, being introspective and analytic
And being insightful and analytic about a life-threatening disease means confronting mortality. Often I hear stories of people dying without a will. In fact, often it’s only once people have children that they feel sufficiently motivated to create a will, because their love for their child (and making plans for a guardian) is the only thing that can make them confront this fear.
Often when I was in the midst of chemotherapy I wanted to have conversations about the “what ifs.”
What if they didn’t get it all.
What if the chemo doesn’t work.
What if the cancer comes back.
What if I get another (worse) kind of cancer from the chemo.
What if I die.
No one really wanted to talk about the last possibility even though it wasn’t outlandish. (Interestingly, people are very intrigued with my recurrence likelihood and mortality statistics… they view the numbers as easier to talk about in the aggregate rather than just discussing my own death).
I viewed talking about my death as responsible. I wanted to make sure Clarke understood that if I died, I wanted him to find another wife. I wanted him to be happy and loved. I wanted our children to have a mother to love them. Unsurprisingly, my greatest worries centered on my children.
I sat with a friend at coffee one day and voiced some of these concerns. With 5 children of her own, my friend is an amazing wife and mother in all respects. At first she was resistant to talk about my death with me. She didn’t want to entertain that notion. But I pressed the issue. And finally she looked me in the eye and said, “If you die, I promise I will watch over your children. I promise I will make sure they have the right person love them and raise them. I promise you that I will make sure that happens.” I think she figured it was the fastest way to shut me up. I think she figured she would agree to anything I was asking just so we could get off the subject. But at some point I think she realized that it was really important to me. I wasn’t going to let it go. And I wasn’t going to be able to get past it until I felt they would be safe and watched over. So she told me what I needed to hear. And I know she meant what she said.
Like a balloon slowly deflating, I felt my body go lax. Finally, I could let it go. She had promised me she would do for me what I wanted. I could trust her, and I could move my worry to something else. She did more for me by making this promise than she will ever know.
Here is one of the things I’ve learned from my mother: When someone you love is talking about death, don’t change the subject. Don’t trivialize their worries. Don’t say, “Let’s not talk about that now.” If they want to talk about it, it means it’s important to them, it’s weighing on them.
Focus on the fact that while we don’t need to sit around thinking about death all the time, there unfortunately might be times in our lives when we might not be able to think of anything else. If you haven’t experienced that, I applaud you. But sooner or later, you or someone you love will.
December 2nd, 2011 §
I’m working on a new piece about grief during the holiday season, but really want to re-share this short post for those who missed it. I actually re-read it from time to time to remind myself of a valuable insight I had with two of our three children. This was originally written two days after their grandmother was killed in a car crash in 2009.
……………………………………………………..
Children are different.
From adults.
From each other.
I had to give two of my children different directives this morning:
One I told, “It’s okay to be sad.”
One I told, “It’s okay to be happy.”
I needed to tell my 7 year-old son that it was okay to cry, to be sad, to miss his grandmother.
I miss her too.
And it’s okay to let your emotions show.
It doesn’t make you a sissy or a wimp.
What it does make you is a loving grandson.
A grieving boy.
A bereaved family member.
But my ten year-old daughter needed a different kind of permission slip today.
I sensed she needed permission to smile.
To laugh.
To be happy.
I needed to tell her that it was okay to forget for a moment.
Or two.
To forget for a few moments that Grandma died.
It’s okay to still enjoy life.
The life we have.
Grandma would want that.
I told her that Grandma loved her so much.
And was so proud of the person that she is.
I reminded her how Grandma’s last phone call here last Sunday was specifically to tell Paige how proud she was of her for walking in a breast cancer fundraiser with me.
It’s okay to still feel happiness.
And joy.
It’s okay to let that break through the sadness.
Children are different.
But they take their cues from us.
I know my children.
I know that this morning what they needed from me was a sign that it was okay for them to feel a range of emotions.
It’s healthy.
Because what we are living right now is tragic.
And confusing.
And sad.
And infuriating.
If it is all of those things for me,
It can only be all of those things and more
To my children.
October 11th, 2011 §
Regular readers of this blog know that after more than 49 years of marriage my parents have decided to separate. Over the past few months I’ve memorized a new phone number for my mother. I wrote her new address on a piece of lime green note paper and pinned it to my bulletin board. I’ve repeated stories about my children in the past few weeks twice– first to one of my parents, then to the other.
But six days ago I had the unique and unpleasant experience of driving up the driveway to the house they still own knowing my mother would not be standing out in the driveway waiting for me to arrive.
I was greeted by my father, instead, alone ushering me into my mother’s garage bay, the one she still uses when she has occasion to be at the house.
I walked inside and looked around; her desk in the kitchen was mostly bare, so too some of the walls in each of the rooms. The refrigerator held less than half of what it usually would; even my beloved Nespresso machine was no longer a fixture. I didn’t even go in many of the rooms. I didn’t want to see all of the changes.
Things were different, and not only the things.
Seeing my mother needed to be planned, coordinated. No longer was she only as far as a loud yell down the hall. No more could I stalk her around the house instigating conversation in an attempt to catch up on every little thing we’d missed since our last phone call.
That night I saw her new apartment and everything really started to sink in. By the next morning when I awakened I was overcome with emotion. I went downstairs to the kitchen and still half-expected her to be there, reading the paper, re-heating a cup of coffee that might have been put aside and gotten a chill. I still expected to see her the way I almost always did in the morning: dressed for the day, a full face of makeup save the trademark cherry red lipstick she would wait to apply until she had finished her morning cup of coffee.
For now phone calls via speed dial and texts would have to tie us together.
It wasn’t the same, of course. It couldn’t be. It can’t ever be.
I did keep a constant refrain in my head: my mother is alive, my mother is healthy. I am thankful for that.
She was not under the same roof I was anymore, but she still resides where she always has: in my heart, as close as she can be.
October 9th, 2011 §
Last Wednesday we took Tristan to Shriners Hospital for his checkup with his spine and hand team. He goes every 6 months for monitoring, in particular to make sure the tilt of his head has not increased. His spinal deformity consists of hemivertebrae (vertebrae that are only partially formed) and vertebral fusions (ones that are stuck together). This combination results in his case in something known as a disorganized spine.
As an infant his head was quite crooked on his neck.
During the ensuing months, the tilt measured 25-30 degrees. The severity of the situation increased and Dr. Randal Betz told us if the curve progressed we would have to intervene with surgery to fuse the vertebrae in a straight position. His neck growth would be halted; while his body would mature his neck size would be that of a toddler. He would have no mobility in the neck after the surgery. We prepared ourselves for hearing the news.
We continued to monitor his growth. As he began to sit, and then walk we watched as the neck grew. His two hemivertebrae were growing in such a way that they were balancing each other as he grew. Had the pizza slice-shaped wedges been wide on the same side, surgery would have been inevitable. Because they were on opposite sides, this “z-curve” worked to his advantage. By the time he was a toddler his head was straighter.
Though his neck is short, and always will be, it has continued to grow. Physical therapy since birth has kept his muscles stretched and strong. Weakness on one side of his body is imperceptible.
This week his x-rays showed that the tilt once at 25-30 degrees is now less than 8 degrees. His eye sockets and lower jaw are almost even. The three points he has mobility in his neck are stable and should be sufficient to prevent extraordinary wear. He’s doing as well as he possibly can be, given his anatomical issues.
We next had Tristan’s appointment with his hand surgeon. He, too, was pleased with the results of Tristan’s three-pronged surgery last March (you can read about Tristan’s hand deformities here including his lack of a flexor pollicus longus muscle on his left side which makes his thumb unable to bend ). A flexor digitorum superficialis tendon transfer, ulnar collateral ligament reconstruction at the base of the thumb, and a 4 flap z-plasty of the thumb index web space were all successful. The large scar on his wrist is fading and it’s hard to believe it looked like this.
Here he was this week showing that hand with his upper extremity surgeon, Dr. Scott Kozin.
His left thumb will never bend, and the hand will be weaker because of it. He is a lefty, so it does affect his fine motor skills. But we continue to do hand therapy with him and it’s made a world of difference. Each Monday and Tuesday this 5 year-old is doing his therapy sessions at 6:30 A.M. before he heads off to kindergarten. That smile is always on his face. He never complains. He got a great report and we left Shriners happy and exhaling for another six months. We saw many friends there and it’s always like a family reunion. We’ve been through a lot together and we are grateful for their continued support and care.
I do want to mention one thing we learned at this visit. Shriners specializes in orthopaedic and spinal cord injuries; when children have traumatic spinal injuries, this is where they go. Tristan’s spinal surgeon told us there are two activities that they recommend children avoid because the risk of spinal injury is so great (this is for all children, even who do not have any defects): trampolining and riding four wheelers (ATVs). Those two activities have such a rate of injury that the surgeon does not allow his own children to participate in them. I share that information because it was new to me; we do not own either piece of equipment because Tristan is not allowed to do either but we were not aware that those activities were so dangerous to all children.
September 27th, 2011 §
September 29, 2010
Most of you probably read the title of this post and thought I was going to write about the guilt we may feel as parents over the course of our children’s lives when we can’t be there for every event they want us to attend or say no to things we know they might want to do.
But that’s not what I mean by “Mommy guilt.” Instead, it’s the feeling I have today because my mother is coming to visit.
I feel guilty because I have a mother who’s alive and many people I know do not.
I commented on Twitter this morning that my mother was coming for a few days. Author and friend Katie Rosman tweeted back “jealous.” Katie and I actually met because of the moving book she wrote about her own mother’s death five years ago, If You Knew Suzy. I wrote a blogpost about that book; in it I shared personal feelings about having cancer and what my legacy might be for my children.
But there was more.
Katie’s mom is dead. So is my husband’s mother. So are the mothers of many of my friends. And as I go through middle age this will happen more and more. And someday it will happen to me.
Every time I drive the fifteen minutes to the Amtrak station to pick Mom up (when she and my father don’t arrive by car here together) I think about the night I drove to get her at the train station the first time she came to visit after Barbara died.
When I saw my mother step off the train that night last year I almost had to look the other way: it was like looking at the sun.
The sight of her was
so bright,
so intense,
so welcome,
so wonderful,
that I almost had to look away for a moment.
The guilt over being able to see her step off that train and into my arms again overwhelmed me.
And so, today, when I see her again, I will hold her, kiss her, hug her. I’ll hug her for an extra moment and think to myself: this is for all of you. This is for all of you who have lost your moms and can’t do this simple act anymore. A way I can honor her and you is to appreciate these times we have together because I know there are so many who would give anything to have one of these moments with their mom again.
September 27th, 2011 §
A previous discussion about inspiration and setting an example provoked my friend Laura to write to me, “If something ever happens to me where I have to dig deep to find that strength that you have found (and shown), I will think of you. Often. And re-read your blog. Often.”
This was the highest compliment and I appreciated those words immensely. Her words got me thinking.
So many of my friends have mothers who’ve had cancer. In college, my two closest friends, Alex and Deb, both had mothers who had breast cancer. Somewhere in that experience was an expectation for them that someday, inevitably, they would have it too.
It was many years before my own mother did. And then right on her heels, so did I. Before Alex and Deb did. And so, like my mother was for me (see Everyone Needs a Trailbreaker), I suddenly became the trailbreaker for my best friends.
I’ve gone through some cancer scares with friends and acquaintances over the past three years. I’ve sat in waiting rooms, taken phone calls, written emails, met with women in person. I’ve helped friends, strangers, and friends of friends.
When I was young someone teasingly called me a walking encyclopedia. Somehow it still seems true. My husband only half-jokingly shakes his head when he hears some of the questions people ask me. He sometimes says, “They do know you’re not a doctor, right?”
I know that I’m the first of my friends to have breast cancer. And have it “bad.” The whole nine yards. That experience comes with responsibility. I know that having cancer at 37 means that I will be that resource, that friend, that support system.
In the future, others will need me. Friends will ask me how to help, what to do, what things mean.
There is a lot of pressure coming my way and I think about it already: what if I let them down?
That’s the kind of person I am.
I am already worried not only about getting through my own experience; I’m worried how I can help my friends if their time comes.
And statistically it will.
I’m worried who will be next.
I’m angry someone will be next.
I want to be the lightning rod.
I want to take in on for them.
I want to protect them.
Laura, I want to protect you:
I don’t want you to have to read my blog for strength.
I want you to read it because you want a window into a world you never have experienced. And never will.
That is my greatest hope, my greatest dream.
If I could sleep, that would be my dream:
To keep you all safe.
September 16th, 2011 §
September 16 is the anniversary of the death of two women I loved: my paternal grandmother, Sara, and my mother-in-law, Barbara.
Bubbe (Yiddish for “grandmother”) died in her 80s, many years ago, after her health had begun to fail. She lived in Israel, and I did not have the opportunity to see her one last time before her death. In stark contrast, Barbara died only weeks after I last saw her, laughed with her, attended a family wedding with her. We had no earthly idea she would be killed in a car crash, of course, no time to prepare ourselves for hearing the words that rocked our world.
It was Open House at my children’s elementary school that night, and when the phone rang I didn’t recognize the voice. It was my husband’s voice, strained, hiccuping, sobbing. I didn’t understand at first; I couldn’t process what he was saying. In the same way I quizzically furrowed my brow when I sat in the basement of my daughter’s school in New York City and the principal announced on that first day as our preschoolers were upstairs, “A plane has hit the World Trade Center,” I again heard information and my brain responded with Does Not Compute.
Anticipatory grief is real. A diagnosis, a doctor’s report, an assignment to hospice– all are ways others try to prepare us for the death of our loved one. With each step, with each caution, with each added conversation we start to get our minds used to the idea that it may be the end. Like a threadbare shawl we continue to wrap ourselves in, each time we are comforted less and less by others’ words of reassurance.
When a death is sudden and unexpected, there is so much to get used to, so much to process. It is a task to make sense of the death, to integrate it into our consciousness. We must unbreak habits. I remember so clearly when my uncle Alan died, I still continued to pick up the phone again and again to share a piece of news. I had to keep reminding myself, “You can’t call him anymore.”
There are so many talks I have missed with these women. There are so many things I’ve wanted to show them, share with them. However, I am so lucky to have had them in my life for as long as I did.
September 6th, 2011 §
The house is so quiet… for the first time ever, all three of my children are out the door before 8:00. Tristan will have half days of kindergarten for the first two weeks so the change from preschool won’t be too dramatic. And yet, somehow with his backpack on, lunch pack clipped to it, it is different. He stands at the bus stop with a bunch of other children from the street; some of them were babies when we first moved here seven years ago. I see the changes in them after the summer more easily than in my own.
These are the psychological stretch marks I’ve written about before. These are the moments you know are monumental. Growth happens in fits and starts, not with smooth, sliding grace. This shift is simultaneously sudden and gradual in its arrival; I’ve been counting the days for the last month, but still the finality of its presence takes my breath away. With Tristan it’s different, his life thus far has been a challenge in many ways (background on Tristan and his physical abnormalities here). We’ve been a team, and worked so hard together. He will continue with OT and PT and need a few modifications in the classroom. But I know he’s going to be just fine.
I’m looking forward to writing again… the last month has been busy with things mostly of the unpleasant kind. But the routine of the fall, the schedules, the calendars give me structure. And with structure comes comfort. I can get through this rocky time. I can create the life I want, the one I need. I just have to keep trying.
August 19th, 2011 §
Much writing comes from pain. Much of mine has.
I initially started this blog when I was dealing with the after-effects of my cancer diagnosis, chemotherapy, and surgeries. Later I wrote about my grief when my mother-in-law Barbara was killed suddenly almost two years ago. Back then — and now once again — there is a line I have always tried to walk between exploring my own feelings about my life and those in it while not divulging too much information about people who might not want to be so public with their thoughts as I have.
I haven’t posted much this month; it’s not just because it’s summer vacation time. I’ve been struggling with some issues and unsure how I can write about them while still allowing those I love their privacy.
I try to be the quiet wheel– you know, the one who doesn’t get the grease. With neighbor disputes, school and coaching situations, I do my best to be neutral, to just get along with people. When it comes right down to it, I just hate drama. I could never go on a reality show because my idea of a great day is one that most would term “boring.” I just want quiet and peace, a good cup of coffee and good health for my friends and family.
But lately that’s not possible and there’s a knot in my stomach all the time. And what I’m realizing is that it’s hard for me to write when I can’t be completely open and honest. It’s hard for me to carve out a part of my life and say “but I won’t touch that subject.”
The varied parts of our lives are intertwined; the strands are knotted. It’s one big heaping mess of togetherness.
And so, I want you to know I’m working on it. I’m trying to figure out how to navigate this time in my life.
August 2nd, 2011 §
I thought they would always be together. I thought it would be until the end. When I look back over the things I’ve written about my parents, a constant theme is always how I can’t imagine them without each other.
And yet, this week, my mother moved into her own condo and began her life apart from my father.
Their dynamic just was not working anymore; six months shy of their 50th anniversary, they’ve decided to separate.
I’ve known for a few months, and the children know now too. In fact, as I write this, my parents are (together) spending a week with Paige and Colin as they do each summer. Nothing, even the decision to move forward apart, comes in the way of that this year.
I’m still a child. Their child.
I’m learning that no matter how old you are it affects you; age is not a protective shield against the hurt that can accompany such changes. Now 42, I have two generations to consider: my parents and my children. At the moment my parents’ health is good; I’ve written before about my mother’s stage III cancer diagnosis six years ago (she is in remission). But I confess, even on their healthiest days I play the “what if” game. I feel I need to always be thinking about the future, making sure I have an escape route. Like a stewardess pointing with a flourish to an exit in the forward cabin, I need to show myself that there is always a way out, a plan should something go wrong.
Even in the face of truly excellent health we’ve learned that life can change in an instant; after all, Clarke’s mother was perfectly healthy when she was killed in a car crash almost two years ago. I did not have a “what if” mentally written for that circumstance– how could I? But I have seen the way a tragedy can change a life in a split second. I think my confidence in what the day will bring has been shaken; I no longer believe that the day shall end as it began, life bookmarked in its progress.
I love my parents dearly; I am as close to them as a child could be, I think. We laugh, we talk, we share. I wouldn’t have it any other way. But the fact we are so close means this new chapter of their lives affects me deeply. How can it not? The very foundation of home life I have know my entire life is gone. I’ve been married for fourteen years; I am not a naive child who thinks wanting to make it work is enough.
And so, I program my phone with my mother’s new contact information; she gets her own entry now. I order change-of-address cards for her, and return address labels. Information now needs to go to two places. Anecdotes about the children need to be recounted twice rather than hearing my voice echo on speakerphone in the kitchen.
I support their decision– how could I not? I want them to be happy, and to achieve this goal they must live apart. But my knowledge that it’s what is best doesn’t make the bitter pill any easier to swallow.
I know a lot about grief and loss. I know that it takes time. This loss is something I’m dealing with, and will continue to, day by day.
July 5th, 2011 §
I met a woman who told me something shocking.
It wasn’t that she’d had breast cancer.
Or had a double mastectomy with the TRAM flap procedure for reconstruction.
Or that she’d had chemotherapy.
What made my jaw literally drop open was her statement that she has never told the younger two of her four children that she’s had cancer.
Ever.
Not when she was diagnosed.
Or recovering from any of her surgeries.
Or undergoing chemotherapy.
She never told them.
To this day– five years later– they do not know.
I like to think I’m pretty open-minded. But I confess, it took a lot of self-control not to blurt out, “I think that is a big mistake.”
I’m a big believer in being open and honest with your children about having cancer. My caveat, using common sense, is that you should only give them age-appropriate information.
When I was diagnosed with breast cancer Tristan was six months old. Of course he didn’t understand what cancer was. Colin, age 5 at the time, understood some of what was happening. I explained to him what cancer meant, that I was going to need surgery to take the cancer out, where the cancer was, what chemo was, what it would do to my appearance and energy level. Using words like “I will be more tired than I usually am. I might feel sick to my stomach and need to rest more” explained things in words he could understand.
Age 8 and the oldest at the time, Paige understood the most when I was diagnosed. She had bigger questions and well as concerns about me (“Will I get it too? Who is going to take care of us? Are you going to be okay?”).
It’s not that I think small children always understand everything. But they are certainly able to sense that things are not “normal.” They can tell when people are acting strange. I think it’s important that they know there is a reason for that change. Children have a tendency to be egocentric; they think that everything is their fault. They may think they have done something wrong if everything at home feels different.
The woman told me she didn’t want to worry her children. She thought it “unnecessary” to tell them. She said when they got older she would explain it. I argue that by keeping her cancer a secret, she runs the risk of doing the opposite: making cancer seem scarier and more worrisome.
If children hear words like “cancer” casually in conversation as they grow up they will be comfortable with them; in that way, they won’t be frightened of them. If they understand the truth of the diagnosis and treatment they are dealing with reality. By hiding the truth, the unintended consequence is to make it seem worse than it is. By not telling children, and waiting until they are older, it reinforces the idea that cancer IS something “big and scary.” After all, if it weren’t, you would have told them already.
I think being secretive is a step backward to the days when cancer was only talked about in hushed tones: the “C” word or “a long illness.” These concepts might seem primitive to us now, but it wasn’t long ago that these vague labels were the norm. By showing our children, our friends, our neighbors, that we can live with cancer, live after cancer, we put cancer in its rightful place.
To me, the deception that goes on to lie to children about where you are going, what you are doing is lying about a fundamental part of your life. Cancer isn’t all I am — but it is a part. And it’s an important part of my medical history. If for the past 3 years I’d covered up where I was going and what I was doing, the web of deceit would have been extensive. I can’t (and won’t) live a life like that.
Further, I think it’s a poor example to set for my children.
Lying,
covering up information,
and omitting important information are all wrong.
With rare exception, the truth is always best.
Presented in the proper way,
commensurate with a child’s age,
a difficult situation can be not only tolerable but surmountable.
It takes work. It takes parents who can manage not only their own emotions about having cancer but also be involved with helping their children cope with it. It’s more work, but it’s worth it.
I think that woman made a mistake. I think her decision was harmful. I am sure she thinks she was doing her children a favor. I totally disagree. I think keeping this type of information from children “in their own best interest” is rarely– if ever– the right thing to do.
April 9, 2010
July 5th, 2011 §
Last summer I wrote the following piece about an upsetting interaction I had with a bookseller. It remains one of the posts that readers mention and still ask me about. The topic of children and death must be a touchy subject for most. I guess because I grew up with a mother who was a psychologist specializing in these topics I have never felt uncomfortable talking about them. Let me know what you think.
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June 23, 2010
School is out for my three children. At ages 11, 8, and 4, the days are a hodgepodge of activities to allow them relaxing time at home with each other and some physical activity each day. No matter what their summer plans hold (sleepaway camp for 2 of them later this summer), I always make sure they each have a stack of books they are excited to read. Each night they go up to their rooms for at least 30 minutes before bedtime to read.
Yesterday we took a trip to my favorite independent bookstore. The tiny, jam-packed store has many employees who know and love books working there (all women, it seems). The children’s section is brimming with wonderful books for all ages. My favorite thing to do is bring the older children there and let them chat with a bookseller, telling what they’ve just read and whether they liked it or not. The clerks then can make suggestions about what the kids might like to buy/read next.
When we walked in it was apparent my favorite person was not there to help us. Another woman offered, and off we went to the back room. “What have you just read that you liked?” she asked my 11 year-old daughter. “Elsewhere,” (by Gabrielle Zevin) she answered. The woman immediately snapped, “That’s too old for you. It has death in it,” she said. She looked at me quizzically, silently chastising me for my daughter’s book choice.
“I don’t mind that she reads about death,” I said.
“I loved that book… it was so good!” Paige implored.
“It’s not appropriate for a 7th grader,” the woman persisted.
“I think it’s how the subject is handled,” I said. “We talk openly about death and illness in our house, and my daughter is obviously comfortable reading about it,” I pushed.
The subject was over. She was not going to recommend any books that had to do with the death of a teenager or what happens to that character after she dies. And so, she moved on to other books and topics. Eventually, we found a lovely stack for Paige to dive into.
As soon as we left I talked to Paige about what had happened: how the bookseller had steered her away from reading about death and pushed her to “lighter fare.” I told her that I disagreed with this tactic, and fundamentally think it reinforces a fear of death and discomfort with talking about the subject.
While I believe that a teenager’s obsession with death can be a signal of some larger emotional problem, I do not think that reading novels where the main character dies is inherently a bad idea for a mature reader. After all, so many of even young children’s favorite characters in television and movies have absent/dead parents; Bambi, Max and Ruby, and countless others have significant adults missing from their lives.
I don’t believe in forcing children to deal with the topic of death in reading until they are ready. I do believe parents are the best arbiters of what information and topics are appropriate for their children. But if a child is comfortable in reading books where a character dies, I believe it’s healthy for the child to do so. As a springboard for an honest conversation about death, it can even be extremely useful in beginning to have conversations at home about it.
Paige’s grandmother was killed instantly in a car crash in the fall of 2009. She learned that the death of a loved one can greet us at any time, whether we are prepared for it or not. By trying to steer my mature child away from the topic, the salesperson contributed to the emotional shielding that makes death a topic that so many individuals (including children) have difficulty thinking and talking about.
July 3rd, 2011 §
Katherine Rosman’s piece “Why Friends Help Strengthen a Marriage” in this week’s Wall Street Journal is an insightful look at some ways in which friendships serve as additional support to the ever-challenging marital relationship. Noting that modern times have uprooted many from the anchor of their families, Rosman identifies that friends have become our “family of choice.”
Making friends with other couples is important, not only for practical and social reasons but also because they strengthen our own marriages. Rosman explains, “[A group of friends and I] all agreed that friends help you gather perspective on your relationship to your spouse: When you’re inside a marriage, it’s easy to focus on the points of friction and the minutiae of daily life.” Therefore, friends serve as a buffer, a release valve to ease tension.
As I was reading, however, I began to think of ways in which the opposite could be true. (I should note that I agree with everything Rosman says. Many/most of our own Saturday nights are busy with dinner plans with friends, people my husband and I both enjoy being with. I think it’s not easy to find couples where all four individuals truly enjoy each other’s company. Clarke and I treasure these friendships and really enjoy spending time with the people we care about. I do think it helps our marriage to be with other couples and to see how others interact. The “perspective” concept is vital.)
Here is a dynamic where I think the opposite could be true; that is, friendships with other couples could undermine the marriage:
You go out with couple A and see how they interact. Perhaps one spouse speaks really nicely to the other, compliments him/her in front of others. Or at dinner one spouse doesn’t talk too much and gives the other time to talk. One prompts the other with things like “Tell that story… I love when you tell it. It’s so funny.” Couple A spends time together, helps each other, and/or travels together. While they aren’t perfect as a couple, (who is) they are generally respectful and happy.
Now, Couple B sees this relationship. One person thinks, “Wait a second. Our marriage isn’t like that. Is that what it could be like? Why doesn’t my husband/wife talk about me that way or help me out. Maybe I could do better? Or I would rather be alone than be treated like this if I see some other people have these types of warm and supportive relationships?”
Suddenly, there is a comparison, a reference point. It is precisely this comparison component of friendship which can often be destructive. You might do the comparison on your own, or in a one-on-one chat with a friend (“How does it work in your marriage?”)
Besides comparison, another potential wedge can be introduced into a marriage with critique. Most often, we just need friends to listen. However, sometimes we ask for or they feel compelled to offer opinions, advice, and criticism. In our loyalty and love for our friends we may advise them “you know, your partner doesn’t treat you as well as s/he should.” What we take as normal, tolerable, average, a friend may plant the seed of doubt. In an effort to be supportive they may be “bashing” the spouse. “You could do better,” may be proffered.
I think Rosman’s scenario works but until a tipping point. When all of the couples are happy, (or at least have a similar sense of dissatisfaction) and the disagreements in the marriage don’t escalate, the friendships serve as buffers, releases for some of the frustrations that inevitably accompany two people in a long-term relationship. However, the critique and comparison can ultimately cause trouble. The tolerance for frustration may change as the number of years of marriage increase.
Finally, what happens if one of the couples eventually splits? Not only does that breakdown affect the dynamic of the foursome, (couples will be forced to “pick sides”) but it also serves as an example of how marriage can go awry. “If it can happen to them it can happen to us” may be a question difficult to dislodge. If comparison results in the opinion that their marriage was as happy as your own, the implications for your own long term success may eventually be called into question as the years go by and more and more couples split.
Comparison, critique, and divorce are three ways in which friendships may undermine our own marriages.
I really enjoyed reading Rosman’s piece; once again she has brought a fascinating topic to the page, one that many of us deal with in our daily lives.
July 1st, 2011 §
Okay, so today’s post is something totally different. We’re going to play, “What would you do?”
Clarke came home early for the holiday weekend. As he walked in the door the phone was ringing. I answered it and it was the local taxi company. The man on the phone said he had Clarke’s wallet and told me where we could pick it up. Clarke went back to the train station and retrieved his wallet. Later tonight I asked if he’d tipped the man when he picked it up… in essence giving him a finder’s reward. Clarke said the man hadn’t actually found the wallet; a third person had turned it in. Had the man been the one to find the wallet, he would have given him a reward, he says.
“But the taxi man still could have kept it and not called you,” I said. I thought he deserved a reward, or at least the offer of one. Taxi man could have refused if he felt that doing the right thing was its own reward.
I think that it’s nice to acknowledge that not only did the man did a nice and honest thing, but he also saved Clarke time and money by rescuing his wallet, credit cards, and cash.
What do you think? Would you have actually offered a reward when you picked up the wallet? Remember, the man Clarke picked the wallet up from was NOT the man who actually found it and turned it in, just the one who made the call.
June 17th, 2011 §
I wrote this in 2009 for my father in honor of his 70th birthday.
I am turning forty, and I still call my father Daddy sometimes.
And when I do, my voice still catches in my throat.
I’m still his little girl.
I always will be.
When I found out I was pregnant with Paige, I remember Clarke saying,
“One of the great things about having a daughter is that she will always stay my little girl.”
He knew this from watching me with my father.
My father is strong, unflappable, and focused–
Things you’d like from a heart surgeon.
Daily in the operating room I know my father displayed strength under pressure. He had to.
But the greatest demonstration of this characteristic came not in his professional life, but in his personal life when his two girls—my mother and I — needed him.
In 2004 my mom was diagnosed with cancer.
Three years later so was I.
I am often asked if my dad took control of my medical care– if he took charge and told me what to do.
Those people obviously don’t know me very well.
After all, I am my father’s daughter.
Nobody tells me what to do.
Not even my father.
That’s how I knew I had earned his respect.
He didn’t take charge.
He met each of my surgeons one time.
He knew immediately I’d chosen well.
While he wanted to know every detail,
It was because he loved me, not because he questioned me.
He trusted me.
Finally I knew I had graduated.
Grasshopper had grown up.
He has always been my teacher.
I have always been his student.
Life with him has been a master class.
He was a tough teacher.
He brought out the best in this student.
That’s what a good teacher does.
He doesn’t ask.
You just know.
You want to do your best.
You want to impress him.
You want him to take notice.
You want to earn his respect.
It’s taken forty years,
But I finally feel I’ve earned it.
It wasn’t in school.
Or with my grades.
Or with a job.
Or by getting into a certain college.
It was, instead, in the school of life.
The way I live each day.
The way I move through the world.
The way I raise my children.
The people they are becoming.
The home I have made,
The challenges I have encountered.
And the tools I have used to meet them.
I learned these life lessons from both my parents.
A girl could have no better teachers.
A thank you to my parents.
You are my supporters,
My teachers,
My friends.
Mom and Dad:
Eternal gratitude.
I love you.
June 6th, 2011 §
The rest of my family is coming back today. After a week in Jackson Hole, Clarke and Paige and Colin will return tonight, just in time for Colin’s 7th birthday tomorrow.
The refrigerator has been really empty this week. With just a 2-year old and me, it doesn’t take much to keep us fed. So I took the opportunity this morning to clean out the refrigerator and freezer– really clean them. Take everything out, throw away all the junk, the ice cream that now is just ice crystals. I tossed all of those “placeholders” that you never eat, they just take up room.
As I sprayed a wonderful new lemon verbena spray on the glass shelves, I start contemplating this week. The last seven days were my week to recover from surgery (an oophorectomy), to get stronger, to close out my year. I know I made the right decision not to join my family in Wyoming this year. It’s been a reflective time, a time for my soul to be quiet and heal. I think it’s done that a little. I think another week might help. I’ve loved my one-on-one time with Tristan; we have a nice little routine going, and I feel like he’s grown up this week.
But as the new year starts, of course, we are pushed to reflect on ourselves, to make ourselves better in the next 365 days. We reflexively reflect on whether we’ve kept any of those elusive resolutions from the previous year. December 31st is supposed to bring “closure.” In the arbitrary distinction between one year and the next (after all, why is there really a difference between the last day of 2008 and the first of 2009 any more so than any other passage of midnight on any other day of the year), we are pushed to wipe the slate clean and start anew. As I cleaned the house this week, purging old canned goods, papers, clothing, and sprucing up the house I found I was instinctively doing this: “Out with the old, in with the new.”
This annual rehabilitation, then, is supposed to be psychological and physical.
Most of our resolutions are about ways we want to be better, inside and out: concentrating on the new and gaining closure on the past.
One of my dearest friends wrote to me in an email last week, “And yet, you can no more gain ‘closure’ on life-altering events than you can erase moments from your memory.” I read that sentence many times. It is beautiful, and true.
I remember well when my friend Alex’s father died of cancer almost 10 years ago. She was so busy with all of the things that needed to be done, the arrangements that needed to be made, and taking care of her mother who needed constant attention and support. I remember wondering when she was going to grieve. I worried that his death, and his absence from her life, would fester and haunt her.
As I scrubbed the refrigerator shelves this morning I realized that you never grieve the way you think you should.
No one really just sits alone and thinks about the tragedies that befall them.
It’s too painful, too powerful to take that in as one big gulp.
Instead, what we do is weave it into the tapestry of our consciousness.
We make it part of our daily life, quiet, but present.
Maybe at this time of year we reflect more than usual, and maybe that’s why the holidays are painful as we take stock of what we’ve lost during the year and what we’ve gained.
Where that balance lands says a lot.
A year ago I thought surely 2008 would be better than 2007. It really didn’t turn out that way. But I am doggedly optimistic even when I’ve been been proven wrong so many times. I do not believe that there is a “justice meter” in the universe that is going to now dump things on someone else and leave me alone for a year. But maybe as my own tapestry of consciousness keeps getting woven, it will be stronger and more resilient to keep me going this year.
At least I’m starting with a clean refrigerator.
originally written January 2, 2009. Modified June 6, 2011
May 30th, 2011 §
Each year my letter to troops stationed overseas is similar. Each year I question whether I should write something new, if it’s “cheating” to say the same thing. In the end I realize that thank you never gets old, it never needs to be re-written. Thank you doesn’t have an expiration date.
This year we went to buy items for the care package drive sponsored by the Darien Little League. Volunteers collect supplies including toiletries, non-perishable food, and games and send them to soldiers far from home. While the supplies are important, and more than 500 boxes will go, the most important items sent are the letters. The letter I sent this year has the same theme: bravery– chance or choice?
May 28, 2011
Dear Servicemen/women,
My family and I are sending you some supplies on this Memorial Day Weekend. We want you to know that we have not forgotten you or the sacrifice you are making every day to be away from your own families and in harm’s way. It’s not much, but perhaps knowing you are in our hearts and minds will help.
Four years ago I was diagnosed with cancer (I am now in remission). When I was going through treatment, people called me brave. I didn’t deserve it. “Brave” was not a word you used about someone like me. I had gotten cancer by chance and I dealt with it, the best I could.
But soldiers? You are brave. You have a choice—you put your lives on the line after making a conscious decision to do so. You know the danger and you do it anyway. To me, that is true bravery, true heroism.
It feels good to say it, to confess it. I have been called a word I haven’t earned.
Seeing danger and making the choice to proceed anyway is precisely how I define bravery. We all find ways to deal with the fear of death. We know the uncertainty that lies ahead. We see the bravery in others before we will see it in ourselves.
What underlies bravery: chance or choice? Can both? Are we just hesitant to see the quality in ourselves? Are we just modest? Do we just act the way we need to, to get the job done?
I think when you choose to throw your hat in the ring, that choice counts for something. That makes you brave. That’s what makes soldiers heroes. Happy Memorial Day to you. And thank you for your continued service to our country.
May 25th, 2011 §
A few months ago I asked my mother to share some thoughts on the difference between guilt and regret (A Psychologist’s Perspective on Guilt vs Regret, February 7, 2011). That post quickly became one of my most-read pieces. When I knew my mom was coming to visit this past weekend I asked, via Twitter, if anyone had any questions they wanted me to ask her.
One reader wrote:
My mom passed away six years ago, when I was 24, after a five-year battle with cancer. I’m getting married in a few months and I’m finding two things difficult: 1) going through a big life change, and the actual planning of the event, is making her loss feel much more at the forefront than I expected; 2) I’m struggling with marrying someone who didn’t know my mother and doesn’t understand (and honestly, not sure how he can, not being there) my grief.
My questions are: how do you help the new people in your life know the person you lost and understand the depth of your grief? And how do you deal with the new kind of grief that comes with entering a new phase of life?
……………………………………..
My mother, Dr. Rita Bonchek, spent her career as a psychologist specializing in grief, loss, death, and dying. She had some thoughts on the subject. I decided to add my own take on it; that perspective appears after hers.
……………………………………….
Dr. Rita Bonchek writes:
In American society, the topic of death causes great discomfort so people do not think about or discuss the subject. When the death of a loved one occurs, the bereaved are often encouraged to put the occurrence in the past. Freud felt that the mourner needed to ” let go” in order to move on. However, when Freud experienced the death of his favorite grand-child, he often expressed with great sadness that he would never get over the loss.
What is not appreciated about the death of a loved one is that “Death ends a life but it doesn’t end a relationship that lives on in the mind of the survivor.” Some studies have shown that mourners hold onto the relationship with the deceased with no notable ill effects.
A childhood death of a parent can be a devastating event. How the child grieves is extremely individual and based on the child’s age when the parent died, the cause of the loss, the quality of the parent-child relationship prior to the death, and the support system available both at the time of the loss and afterwards. If a surviving parent removes all items and pictures of the deceased and does not talk about him or her, the child is denied the grieving process. The secrecy and the inability to have a shared grieving between the child and family that shares the loss is a travesty.
The mourning for a mother never really ends. Even after many years while there may not be active grieving, there are what one child called “mommy-missing feelings.” And what does a mother provide for a daughter: support, advice, a significant person who can help and validate the child during development. No one else is so uniquely important to the child as a mother who helps her to form an image of herself. With this self-image, a daughter is helped to determine how to interact with the world and the people in this world. A daughter’s feelings, thoughts, hopes, desires and attitudes are influenced by a mother. But this mother does not have to be the mother who existed in real life but who is a mother who exists in the daughter’s heart and mind. This is a mother who is carried within a daughter forever.
When a mother-daughter relationship has been strong and positive, a mother loves a child in a very intense and special way. A daughter will miss a mother’s protectiveness, loyalty, encouragement, praise, warmth, and, as the daughter becomes a woman, an adult-to-adult friendship. There are special times in the developing daughter’s life in which the absence of a loving person is painful: graduation, confirmation, Bar/Bas Mitzvah, a wedding celebration, the birth of a child, etc. This is when the wound is re-opened.
Who the daughter was when her mother died is not who she was after the painful event. Every death of a loved one changes us and causes us to re-grieve the loss of other loved ones. Hope Edelman, in her book Motherless Daughters encourages women to acknowledge, understand and learn from the changes that occurred as a result of the early loss of a mother. It can take years. With reflection and understanding of what was lost when her mother died, a daughter can, with greater sensitivity, become her own role model as she creates a strong family and friend network of her own.
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I had the following thoughts:
Even though the death was six years ago, it happened to you at a time before marriage and/or motherhood. While not relevant to all women, these are often defining events in their lives. While you had your mother for your childhood, oftentimes daughters do not fully appreciate their mothers until they become wives and mothers themselves. When you no longer have a mother to admit “now I understand what you meant” or “I’m sorry for how I behaved as a child” it can feel that there is unresolved business at hand. Not being able to ask, “Is this how you felt on your wedding day?” or “What was your day like?” is difficult.
Of course, a wedding is one of these events that is tied to family. How can you possibly explain the ways in which these occasions make you miss your mother? As my mom said, it’s not just the relationship you had that you grieve, it’s the relationship you could be having now. There is no way to fill that void, no one can fill that space. I think that incorporating your mother and her memory into your ceremony may provide a way for her to be remembered and present during your wedding. Because your fiance did not know her, he will not miss her in this event. You will, however, as some of the guests at your wedding will too.
It’s a common misconception that talking about your mother or acknowledging her absence will “make people sad.” On the contrary, I believe that talking about her and her absence is appropriate. One way I think this is appropriate is to mention her in the wedding program and/or light a candle during a portion of the ceremony that names those who are “special to us but not here to share this day.” I have seen an acknowledgement of special friends and family who are deceased but remembered on this special day. A paragraph, properly worded, could mention your mother’s role in raising you, making you who you are today, and how you wish she were here to share this occasion. Similarly, wearing a piece of her jewelry or clothing (like a veil) or carrying her favorite flower in your bouquet might help you feel closer to her on the actual day.
Grief sneaks up on you when you least expect it; the reflexive reach for the phone is a hard habit to break. Both happy and sad events can make you miss loved ones. Every little thing reminds you of your loved one, the things you did and the things you had yet to do. You grieve the relationship you lost and the one you had yet to build. The relationship was truncated, and that cannot be fully appreciated by someone who has not experienced it.
I don’t know if you have shared a lot about your mother with your fiance, but I think it’s important to do so before you get married. I think it’s important to write about her and talk about her with him. He’ll never be able to understand fully, and he’ll never miss her since he didn’t know her as you did. But he does need to understand how important she is to you now even though she’s no longer alive. That may not be intuitive– although your mother died six years ago she is still a very important part of your life.
It’s important to say that not all of the memories surrounding your wedding would necessarily be happy; after all, weddings can be prime opportunities for mothers and daughters to clash. However, the pivotal moments of walking down the aisle, first dance, photographs, and so on can be especially difficult.
Sometimes when we grieve we don’t know exactly what we need, and in the end, no one can provide the “fix” for us — that could only happen if our loved one came back. Realizing that you don’t really know what you need all the time as you go through this is important, too. Something your fiance says might be incredibly aggravating one minute (a reminder that “he just doesn’t understand”) but other times the same thing may strike you as supportive. He’s in a tough situation because he’s trying to support the woman he loves on a day that is supposed to be one of the happiest days of your lives together. However, it has a component of pain involved for you. He needs to accept that dialectic and not try to gloss over or erase the pain that will accompany all of the happy days you will have together. He needs to know that grief will be a part of every happy event you will have in the future because your mother is not there to share it. The sooner he can accept that truth, the better it will be for both of you, I think.
I hope that some of these thoughts will help you in the months leading up to your wedding and that you can find a way to incorporate your mother’s memory into your ceremony. I know she will be in your heart and on your mind.
May 18th, 2011 §
A few weeks ago I was talking with a friend about our blogs. She said that she never writes about her husband; some readers didn’t even know she was married. I don’t directly write about my husband Clarke often. I’ve written endlessly about his mother Barbara’s sudden death in a car crash in 2009 (if you want to read more about her, please click on the tag “Barbara” on the lower right of the page) but not about Clarke. Clarke is private, and I respect the fact that he doesn’t want to write or discuss topics that I do.
Clarke wrote a piece that I treasure. In 2009 he nominated me as a “Brave Chick” for a website that celebrated women who had tackled adversity (www.onebravechick.com). The interesting thing to me as I re-read the essay now is how much more has happened since then. We’ve had many medical and emotional challenges since this letter was written. I like to think that the seeds of strength were sown during some of these experiences.
I am re-posting this today not to celebrate myself, but rather to celebrate my husband. We are a team in this thing called life and I couldn’t do it without him. I hope I will get him back here on the blog sometime to write about some more of the issues we have dealt with; I think hearing it from his point of view might be helpful for some readers. But for now I will let his words sing, and hopefully honor him by doing so.
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“The bravest sight in the world is to see a great man (or woman) struggling against adversity.”
-Seneca
“Let us do our duty, in our shop in our kitchen, in the market, the street, the office, the school, the home, just as faithfully as if we stood in the front rank of some great battle, and knew that victory for mankind depends on our bravery, strength, and skill. When we do that, the humblest of us will be serving in that great army which achieves the welfare of the world”
-William Makepeace Thackeray
My wife Lisa and I met for the very first time at the George Foreman / Evander Holyfield fight in the spring of 1991 when, in a scene straight out of Rocky, a forty-two year old Foreman went the distance with the undefeated Holyfield. We met again at a Halloween party later that year and began dating. We got engaged in 1995 and married in the summer of the 1997. Over the course of our 18 years together and in particular the last three, it has become clear to me that my wife possesses more than her share of courage.
As with any 18 year period we have had our ups and downs together but mostly it has been up. We have three beautiful and intelligent children, loving and supportive families and great friends.
In the grand scheme of things, our life together was pretty smooth which is why I think we were completely unprepared for what the last three years have brought us. In August of 2006 we learned that our five month old baby boy was born with a condition that required immediate open heart surgery. He also had complex problems with his cervical vertebrae and the muscles of his hands that would require a significant ongoing investment of time and energy in medical care and therapy.
Since Lisa is at home with the kids when I’m at work, the day-to-day heavy lifting of running the house and managing the often crazy logistics of our lives naturally fall to her. In addition, because she is the medically savvy one in our family (her father is a surgeon and her mother is a psychologist), Lisa ended up quarterbacking and supervising Tristan’s care which included (and still does include to some extent) coordinating treatment with four or five different specialists (neurologists, pulmonary specialists, pediatric cardiothoracic and orthopedic surgeons, etc.) in three different cities. Juggling all of those competing priorities was extremely challenging and time-consuming. It seemed like fate was piling on hardship in January of 2007 when Lisa was diagnosed with Stage II breast cancer.
Lisa spent much of 2007 aggressively treating her cancer with a double mastectomy and chemotherapy. I’m sure many women who read your website are acquainted with the harsh reality of how tough a cancer treatment regimen can be on one’s body and, just as importantly, one’s psyche. I must confess that I wasn’t really prepared for what was to follow. Like many things, cancer treatment seems much simpler in the abstract or on television than in the messy reality of real life. It is a process where you are forced to make life-changing and often heartbreaking decisions while in possession of only limited information all the while dealing with the physical, mental, and emotional side effects of disease itself and the treatment. If adversity is the test by which character is revealed then I’m proud to say that my bride has passed her personal test with flying colors.
At least by the romanticized ideals of literature or history you don’t get to see real bravery very often when you live in Darien, Connecticut (braving the long lines at the local Starbucks doesn’t really count). However, there was something quietly heroic in how Lisa handled the myriad of issues she was dealing with in a thoughtful and calm (with some exceptions) manner all the while taking care of the thousand little details that go along with being a mom to a young family. No matter how much personal pain she was in, the kids’ lunches got made, their homework got done, their boo-boos got kissed, and their very real fears addressed and soothed even on the very worst days. Tending to young kids isn’t easy on your best day but being able to do so and face the world in the midst of cancer and chemo and all that implies is something else altogether.
Looking back, the amazing thing to me is how little impact the whole period had on our children; that speaks to how much of her energy and force of will Lisa put into ensuring that that was the case. We had lots of help from our families and our amazing group of friends, but at the center was Lisa getting up each day and doing her best to move forward with grace and determination (kind of like a 42 year-old George Foreman coming out of his corner, taking his licks and getting in some good shots of his own). In my book, that is all any of us can really expect of ourselves and defines what bravery is all about. When my test comes, I hope I do as well and face up to it with as much strength as Lisa did.
A friend whose wife had just gone through the breast cancer experience told me when I learned about Lisa’s diagnosis “the thing about breast cancer (pardon another tortured sports metaphor) is that you never get to spike the ball in the end zone and say you are done. There is always something else.” I thought I understood what he was saying at the time, but I appreciate it much more now. Although chemo ended in the summer of 2007 and her breast reconstruction finished shortly thereafter, Lisa has been dealing with the often frustrating regimen of drugs and side effects that come along with being a cancer survivor. While things are certainly better than they were, it has been a constant challenge and adjustment for both of us.
As I said earlier, one of the most difficult things about having cancer, even a cancer that is as common and well known as breast cancer, is that you really don’t have any idea what is ahead of you as either a patient or a spouse when you begin the process. There are reams of data and academic studies available but despite that fact, it is difficult to distill and digest all of that into a coherent picture as to what you as an individual (or the spouse of one) will experience.
As part of her life as a cancer survivor, Lisa has taken it upon herself to make understanding the long road of treatment, recovery, and being your own best advocate a little easier for women who will face the same challenges she did. She spends hours and hours speaking to women in our community who are just beginning the process about what she has been through in the hopes it will help them be prepared. As an extension of those conversations she began writing (and later blogging) about her experiences and feelings about cancer and posting them on the web. She sometimes writes clinically about the nitty-gritty medical realities of treatment and recovery which are based on her personal experiences, extensive research of the available medical literature, and her own conversations with her doctors.
Other times she examines the darker, emotional, frustrating, and deeply personal places that being a cancer survivor can sometimes bring you as young woman and a young mom. Her writing is often beautiful and poetic and is always thoughtful and enlightening. She puts it all “out there” for public scrutiny. She posts regularly under her own name to help her fellow women (our moms and sisters and daughters) understand and deal with a path that all too many of them will walk down at some point in their lives. I believe this is noble and selfless and courageous.
So as a very small and modest way of acknowledging her daily efforts and recognizing her achievements, I would like to nominate Lisa Adams (age 39), loving wife, wonderful mother, caring friend, talented writer, and strong cancer survivor to be a featured brave chick. I would invite those members of your community who are interested to check out her writing at lisabadams.com.
Thanks for your time and dedication to Brave Chicks everywhere.
Clarke Adams
July 7, 2009
May 13th, 2011 §
One of the defining features of childhood is innocence.
As children we don’t realize that things change. We think the way that things are when we go to bed at night is the way they will be in the morning. We put the bookmark in our lives and expect everything to be the same when we return to it.
Of course, as we grow we realize that’s not true.
That it can’t be true.
That’s not how things happen.
That’s not the way the world works.
And what do we say when someone still believes it? We say he is being childish.
Oftentimes I wish I could retreat to childhood. Not because of how my childhood was, but because I want to recapture that mindset, the one that says that everything is going to be alright. When people tell me “everything is going to be fine” I snort. I recoil. I don’t believe them.
It’s not always going to be alright.
Sometimes it is. Sometimes it isn’t.
But the road you must take to figure it out might break you before you ever find out for sure.
May 8th, 2011 §
I can do better, but I have done my best so far.
I’m not the fun mom, but I’ve taught my children big lessons in their young lives.
I try to be a good wife, mother, daughter, friend.
I try to inhabit the womanly roles even when I don’t always feel feminine.
I spend a lot of time inside my head,
twisting, pulling, ruminating.
It doesn’t mean I’m sad. It means I’m thinking.
I’ve made mistakes,
I regret some of them.
But my children are not those mistakes: they are my legacies.
I look at them and wonder how it can be that Clarke and I have created three people. Literally given them life.
It is a joy for a mother to see her children grow,
learn to inhabit the space they take in the world,
learn to own that property.
It’s as if children need to learn the size of their bodies– the breadth of their being– in order to go out into the world and participate in it.
I love watching this process unfold.
I can do better in the future, but I have done my best so far to mother them.
And really, that’s all anyone can ask.
April 30th, 2011 §
What does it mean to “be an inspiration”? A few people have said that to me recently: I am an inspiration. At first I laugh. I guess I’m an inspiration because I’m still alive. Maybe that’s enough.
What’s inspirational about me? Trust me, I’m not searching for platitudes here. I’m trying to get at “what makes someone an inspiration” and why do people think I and so many other breast cancer survivors qualify? There’s definitely more than one day’s blog in this question.
Is it being a mother and worrying about your children more than yourself? No. That’s what every mother does.
Is it summoning strength to confront chemo when it’s your greatest fear?
Is it putting a smile on your face when you are crumbling inside?
Is it speaking the words, “I have cancer” to your children, your friends, your husband, your parents, your in-laws, your brother, and all of the people in your life enough times that eventually it starts to sound normal?
Is “inspirational” when you offer to show your post-mastectomy body to women so that they will know the results just aren’t as scary as they are thinking they will be?
Is it answering everything and anything people want to know?
Is it putting words and feelings in black on white?
The essence of inspiration is being strong.
When you least want to be.
When you are faking it.
Strength.
When you lack it.
When you have to dig deep for it.
When your kids need dinner and you want to vomit from the chemo.
When you are too weak to climb the stairs.
And you don’t think you can get through another day.
Or hour.
Or minute.
Or second.
And you just want the pain to end.
Somehow.
Some way.
Any way.
Just have it go away.
When your pride is gone.
Dignity is gone.
All of it.
Being inspirational means being tough.
It means feeling rotten but not wanting others to.
It means wanting to put others at ease with how you are doing.
It means being a lightning rod for everything bad.
A catalyst for everything good.
A spark.
A resource.
A friend.
A wife.
A lover.
A mother.
A daughter.
It means telling your parents you feel okay when you don’t.
A little fib so they will go home and get some rest for the week.
Take some time off for themselves before they come back in 8 days and do it all over again.
A break so they don’t have to see their little girl suffer anymore
Because 6 days in a row is enough.
For anyone.
Because looking good makes others feel better about how you are doing.
So you put makeup on.
And dress well.
And put a big smile on your face.
So they will think you are feeling good.
And when you switch the topic of conversation, they will go along with it–
They will believe you when you say you are feeling better.
Okay, so maybe I am inspirational. I don’t call it inspirational. I can only admit to the smaller things. The micro things. Inspirational sounds big. Important. It’s hard to accept that one.
But I think I’m convinced.
The reason I’m going to finally concede is that I just realized something:
That was my goal.
Except I wasn’t calling it that.
I was just calling it doing it right.
I was calling it setting an example.
I was trying to show my family, especially my daughter, how you can tackle an obstacle– a big one.
I was just doing my job.
June 15, 2009
April 11th, 2011 §
The months and years go by. Like all of you I mourn the quick passage of time. “Where did the fall/winter/year go?” I hear my friends asking.
Projects we hoped would be accomplished — tasks we hoped would be done — sit unfinished. Organizing photos, cleaning out a closet or a room, reading that book a friend recommended; many things went undone in the dark and cold months of winter.
Maybe there were emergencies, maybe there were health issues, maybe you just couldn’t get the energy together to accomplish everything you wanted.
Regardless the reason, there can be a bit of disappointment when a season ends.
Growth happens in fits and spurts, not with smooth, sliding grace.
With each phase comes
pain,
discomfort,
unease,
restlessness,
sleeplessness,
yearning.
At the time of my mastectomies the reconstructive surgeon placed tissue expanders in my chest. These were temporary bags of saline that would be slowly filled to stretch out my skin to make room for the silicone implants that would eventually take their place. Each week, like clockwork, I returned to my surgeon’s office. He accessed a port in each expander with a needle and added saline to each side. Each time after a “fill” my chest would feel tight. The skin wasn’t big enough for the volume inside, and it would react to the increased pressure by stretching. Until the skin could replicate there was achiness, tightness, a slight ripping or tearing feeling.
A similar sensation happened to me during my pregnancies. The growth happened fast; I got stretch marks. I had visible proof my skin just couldn’t keep up; the growth was too rapid, too harsh, too vigorous.
I often wonder if mothers and fathers get psychological stretch marks when we are asked to accommodate changes we’re not quite ready for.
What can we do? What options do we have? None. We must “go with the flow” and do the best we can. Our children grow and change whether we like it or not. We do them no favors by trying to protect them, coddle them, and keep them young.
We give them wings to fly when we give them tools to be
confident
and caring
and inquisitive
and trusting
individuals.
I am often moved to tears as I watch my children grow.
I sit in wonder at the succession of infancy, childhood, and adolescence.
I know that as a mother I lack many skills, but I also know that the words I have written in my blogs and essays will one day be a gift to them too.
Not a gift to the children that they are, but instead a gift to the adults that I am raising them to be.
Each August as they go back to school I marvel that another school year has passed and yet another is here.
No matter how you measure time it always goes too fast.
The growth happens too fast.
The growing pains hurt.
The stretch marks might be invisible, but they are surely there.
April 7th, 2011 §
I’m cranky, I’m sad, I’m frustrated.
I don’t want to explain how I feel to family members. I don’t want to have to.
I want to yell, “If you’d had cancer you would understand!” But I know their ignorance is my prize… the prize I get for the fact that some of the people I treasure most haven’t had cancer.
I’ve seen a comaraderie that comes with this disease.
We may have had different types of cancer, different treatments, different prognoses… but… we are tied together.
When I was diagnosed one of the first things I was struck by was how vulnerable I felt. I worried about my family, especially my (then) seven-month old son Tristan who had his own medical problems. “Who will fight for him?” I thought. “No one will love him the way I do. No one will be his advocate the way that I will. I have to do it. I have to be here for him. I have to do what it takes to stay alive.” That became my mantra.
But once introduced, the worry could not be abolished. It could be dampened, minimized, controlled. But it could not be removed.
Two days ago a high school classmate died of brain cancer. Today I got word that a woman I know is in intensive care after complications from leukemia.
I ache for their families, for their children. I can’t explain the nuances of these feelings well. I have been here at the keyboard trying to find the words and repeatedly come up short.
And so, perhaps it is enough to say that I don’t always have the right words to convey what it is I am feeling.
But that doesn’t mean I feel it any less.
March 18th, 2011 §
What if I hadn’t gone to the gynecologist on time for my 6 month post-partum visit?
What if, during the breast exam, when my left breast felt “different” (no lump, no real reason, just “different”) my doctor had dismissed it as post-nursing irregularity and told me to come back in 6 months for another exam?
What if, when I called to schedule the mammogram (only 18 months after a clear one) and they said it would be a few months for an appointment I had said, “Okay”?
What if I hadn’t called my doctor to tell her that’s how long it would take and ask if that was acceptable?
What if she’d said “yes”?
What if I hadn’t opted for a double mastectomy?
What if I hadn’t gone for a second opinion on chemotherapy? What if I hadn’t gotten a second pathologist to review my slides?
What if that didn’t happen and I didn’t find out with that second look that I actually had invasive ductal carcinoma in one breast, in my lymph node, and dysplastic cells in the other breast?
What if I had decided not to do those things? Where would I be now?
What if I hadn’t been assertive, perceptive, inquisitive, impatient, and willing to do what it took to get answers?
I probably wouldn’t be alive. Or if I were, I’d be spending my time treating an advanced cancer.
Not blowing bubbles with Tristan today,
Not praising Colin for his schoolwork,
Not planning Paige’s sleepover for tomorrow.
I wouldn’t be able to enjoy the things I enjoyed today.
But I am here.
I was able to be with my family.
I was able to help others.
I am able to look to the future with hope.
And for that, I am happy.
March 14th, 2011 §
My parents came to visit on Saturday. They stayed for 24 hours, took the kids out for dinner that night and played lots of games of hide-and-go-seek. Nothing extraordinary, nothing particularly notable. It is in these ordinary moments that I find the most pleasure… seeing my parents and my children enjoying each other’s company.
My mother arrives like an environmentally conscious Santa Claus, toting a reusable grocery bag full of mysterious treasures for the kids. Many are newspaper clippings: suggestions for books or reviews of movies they might have seen. Often they are word or logic puzzles from their local paper; for me there are usually cartoons. There’s usually something from the dollar store. Tristan is usually obsessed with whatever she brings while she is here; as soon as she leaves, so too does his interest in the item (hence the inherent beauty of the low price).
Another bag of my mother’s always contains her current knitting project. She knits in the car while my father drives. Tristan loves to wrap the house in the balls of yarn; he criss-crosses the furniture legs, counters, and walls until they are spiderwebbed. Paige has learned to knit and whenever Nana comes she enthusiastically picks up her project to join in while my mom knits. Mom knits wherever she goes. Watching Colin’s tennis lesson, sitting and listening to Paige play piano, watching Tristan ride his tricycle. She almost never looks down at her hands, something I was never able to master.
It was warm and sunny this weekend… a welcome break from the endless weeks of snow, ice, and cold we’ve had here in Connecticut. My mother sat out on the front step with Paige and they knit together while Colin shot baskets and Tristan rode his bike. I peered out the window from the kitchen at them sitting there. It made me sad and happy at the same time. I tweeted: “My mom is outside on front step teaching Paige advanced knitting techniques. I smile, I miss my MIL (mother-in-law), I feel lucky to see this moment.”
I can’t separate out the happiness of seeing my children with my mom with the sadness of wishing Barbara were here, too. Maybe that’s selfish. I know there are so many children who don’t have any grandparents that are alive, and mine still have three. But that is part of grief, I think… the effect it can have on happiness. It takes the purity away. I couldn’t just be happy to see the scene; I necessarily wished their other grandmother could have those moments.
I grabbed my phone and went outside. I wanted to capture the picture so mind won’t forget. Children often remember the quiet moments more than the big, fancy events. Paige will always associate knitting with my mom… she’s treasure the talks they had, side by side, as she knit and my mom helped her when she made a mistake. For Colin, having my dad watch him play tennis is one of the ways he likes to share with my parents. He’s proud, and knows my father is proud of him. He always gives a resounding “YES!” when I say Grandpa will be there to watch him play.
After my mom left Paige continued to knit. Shortly thereafter I knocked on her bedroom door. She answered, tears welling up in her eyes. She told me she had made a mistake. She had tried to correct it, but further wrecked the piece she was working on. She had ripped all of her work out. She would start over.
And so she did. And now, as I type, she’s sitting in a chair working diligently to recreate the work she destroyed. I know she’ll work until she goes to bed.
I know how quickly life can change.
For now, I revel in the glory of the ordinary, the everyday, the mundane.
March 9th, 2011 §
When Tristan started to speak he didn’t call me “Mom.”
Or “Mama.”
Or anything like it.
Instead, he called me Cutie.
At first we laughed. And corrected him. But he was persistent: my name was Cutie. I had called him that often… he was mirroring back what he heard. It warmed my heart every time he said it; after a few times I stopped correcting him.
I could hear him in the house calling, “Where’s Cutie?” and it made me chuckle. In public, of course, it was priceless. “Where’d Cutie go? There she is! Cutie!”
One summer we hired a college student to babysit for the summer. She, too, got on the bandwagon. When referring to me, it was always Cutie.
While at the beach that year, we found a keychain that had “Cutie” on it. I bought it, and stuck it on my key fob.
A few months later when my car was broken into, the key ring was stolen. I have to admit, after the initial embarrassment of telling the young policeman that “Yes, I did have a distinctive keychain, and it was a flip flop that said ‘Cutie’ on it,” I was sad that this souvenir was gone.
Days later, the robber’s loot was found. I went to the police station to see if any of my belongings were there. My CD’s were gone. The sunglasses too. Almost nothing from any of the cars he’d taken things from had been recovered. But there, on the small folding table in the room at the police station was my keychain.
I was so glad to have it back. Somehow it was a really important trinket to me. By the time it was recovered Tristan was already starting to call me “Mommy.”
Interestingly, when he sees photos of us together from those years, including every single one from the photo session in black and white, he says, “There’s Cutie!”
I guess those years were as important to him as they were to me.
Written 4.28.2010
March 8th, 2011 §
Today I am sharing a link to an interview I gave on Jo Frost’s website that went live today (she was the original Supernanny). It talks about blogging and tweeting as a mom. To read the piece go here or read the text below:
Tell me a little about what compelled you to start writing your blog
Originally I started writing my blog after I completed surgeries and chemotherapy for breast cancer. I posted a few pieces on my Facebook page and when some of my FB friends started asking if they could share them with their own friends and family I decided to start a website so there would be public access to them. At first I wrote about cancer, but I then began writing about grief and loss when my beloved mother-in-law was killed in a car crash in 2009. Eventually I began writing pieces about one of our children’s physical problems.
How you incorporate writing a bit about your children (was it something you were hesitant to do at first or did it feel natural?)
I didn’t originally write about my children. While some of my original pieces were about talking to children about cancer and death, it wasn’t until my mother-in-law died that I began to write specifically about my children and their grief reactions. I was struggling with my own sense of loss and I felt that expressing my family’s reaction to this tragedy would resonate not only with our own friends and family, but also perhaps with other readers. Eventually I began to write about our son Tristan who was born with physical abnormalities in his hands and spine. I think I initially felt very protective of him and didn’t want to write about the things which made/make him different. Ultimately I wanted to share his story because I felt his resilience was representative of the determination I had in dealing with my cancer. I also wanted to use it to share the philanthropic work of Shriners Hospital where he receives treatment and has had surgery.
Has writing about your experiences given you a different perspective on them?
I didn’t write about cancer when I was going through the actual surgeries and treatment. It was only later that I could look back on those experiences and reflect on them in a more coherent and thoughtful way. Because I was in the habit of writing already when my mother-in-law died, it was a natural way to document our feelings. I am glad that I have writings for my children to show in print how we dealt with this loss. My youngest child was three years old when she died; this will be one way we will teach him about her warmth, love, and lasting legacy in our family. When I read the blogposts I made in the days and weeks after her death, I am instantly transported to the world of grief. Readers connected with the mutual experience of losing a loved one, especially a death so sudden.
How would you recommend someone gets started blogging?
One cautionary piece of advice I have to parents who want to start to blog is to be very careful about what you say about your family and your children. Children are constant sources of happiness, frustration, and amusement in different combinations at any given time. However, children also grow up to be adults and may not necessarily appreciate stories about their daily triumphs and defeats shared in public. I always make sure to ask myself whether what I am writing is something my children could potentially be embarrassed about. I don’t say anything about them that would be upsetting to them as they grow older.
I think that blogging can be done well, but also can be done poorly. Blogging is a more informal method of writing but I don’t think that should translate to long ramblings of internal monologue. I think the best blogging is done with short posts meant to convey a particular thought or idea. If that means you have something to say every day, so be it. However, I don’t think you do your readers any favors by writing every day if those posts aren’t well-written or coherent. My attitude is that I want readers to be excited when they see there is a new post.
I only write when I am moved to; I only write when I feel I have something to say. I do not work on a schedule and I don’t publish a post unless I feel it’s saying something that is worth the reader’s time.
March 6th, 2011 §
Written September 18, 2009
Children are different.
From adults.
From each other.
I had to give two of my children different directives this morning:
One I told, “It’s okay to be sad.”
One I told, “It’s okay to be happy.”
I needed to tell my 7 year-old son that it was okay to cry, to be sad, to miss his grandmother.
I miss her too.
And it’s okay to let your emotions show.
It doesn’t make you a sissy or a wimp.
What it does make you is a loving grandson.
A grieving boy.
A bereaved family member.
But my ten year-old daughter needed a different kind of permission slip today.
I sensed she needed permission to smile.
To laugh.
To be happy.
I needed to tell her that it was okay to forget for a moment.
Or two.
To forget for a few moments that Grandma died.
It’s okay to still enjoy life.
The life we have.
Grandma would want that.
I told her that Grandma loved her so much.
And was so proud of the person that she is.
I reminded her how Grandma’s last phone call here last Sunday was specifically to tell Paige how proud she was of her for walking in the Komen Race for the Cure with me.
It’s okay to still feel happiness.
And joy.
It’s okay to let that break through the sadness.
Children are different.
But they take their cues from us.
I know my children.
I know that this morning what they needed from me was a sign that it was okay for them to feel a range of emotions.
It’s healthy.
Because what we are living right now is tragic.
And confusing.
And sad.
And infuriating.
If it is all of those things for me,
It can only be all of those things and more
To my children.
February 14th, 2011 §
Today I’m doing a follow-up to a piece I wrote last year. At Tristan’s preschool Valentine’s Day celebration last year he received loads of Valentines; one by his friend Bennett was beautifully written. At this time last year Tristan hadn’t had his tendon transfer surgery yet (you can read more about that here). He wouldn’t hold a pencil, had never colored or played with Play-Doh. He’d never written his name. I longed for the day that would happen, and in that way it usually does, I couldn’t imagine a future where he would write. It often seems when you’re in the worst of a situation, try as you might, you can’t picture a way out, or see that things will ever change. But I had hope, and belief in the surgeon who felt that the 3-pronged approach to making Tristan’s hand work better would help. I always have confidence in the resilience of children. If they want to do something, they will find a way.
Tristan did start writing. It’s neither fun nor easy for him. Cutting, pasting, drawing, writing, zippering… all of these things are a challenge. He’s miles away from having the dexterity to button. But with the help of physical therapists he’s making lots of progress. Three times a week he works on these skills now that his surgery and recovery period are over. His letters are jerky, and crooked. Some are backwards in the way that many 4 year-olds do. Markers are better; he doesn’t have to push so hard on them to make a line on the paper.
The letters may be crooked, so is his little smile. They’re beautiful to me. I know he had to concentrate and work very hard to write this well… this is the Valentine Tristan brought home to me on Friday:
This is the one I’ve been waiting for.
It’s going in my memory box. For always.
………………………………………………..
if you missed it, this was last year’s Valentine’s post:
Tristan’s Valentine
My son Tristan is about to turn 4. I haven’t written about him much here. I started thinking about why that is, given that his life has given us more twists and turns than either of our other children. I think it’s precisely because he’s had his share of hardships that I have felt overprotective of him. But it really needn’t be that way.
Tristan’s physical problems are a bit unusual. For those of you who don’t know him, he had open heart surgery at seven months old to move an artery that was compressing his trachea, preventing him from breathing properly since the time he was born. He required feeding therapy to learn to eat after having trouble combining eating and breathing until that point.
He also had problems with his neck. From birth his head sat at an awkward angle. Doctors thought it was muscular torticollis that could be fixed with physical therapy. We did a DOC band to correct the flattened head he had as a result of this “fixed” neck position. But after a while my intuition told me it wasn’t muscular. I felt it was orthopedic, something that would be an extremely rare abnormality. I took him to an orthopedic surgeon who confirmed our fear: Tristan’s problems were more serious than just a tightened muscle.
We were told various diagnoses for his problems when he was about six months old– everything from cerebral palsy to Goldenhar Syndrome. But in the end, when pressed for a diagnosis they jokingly say he has “Tristan Adams Syndrome,” a combination of rare defects in his spine and hands.
The cervical vertebrae in his neck are not formed correctly. Half-formed, or fused together, the vertebrae near the base of his brain are mangled, appearing on x-rays, CT scans, and MRIs almost indistinguishable from one another. His adorable exterior hides a jigsaw puzzle-like appearance on the inside.
While the abnormal vertebrae caused him a severe head tilt to one side as an infant, it now appears from the outside as almost straight. As he’s grown his “z-curve” (two striking jogs in his neck which have thus far balanced eachother out; either one alone would have required surgical intervention already) has improved with growth.
We watch, we test, we monitor. If the congenital scoliosis (meaning a curvature of the spine since birth) worsens, he’ll need surgery to fuse his neck in a fixed state with rods and screws. His neck would not grow any more, and he’d have no mobility in it. Imagine having your neck in a position where it’s extremely short and you can’t turn it at all unless your whole upper body goes with it forever. So far, we’ve escaped this. But we are told that every growth spurt brings risk.
His other oddity are his hands. For the first year of his life we knew something was wrong, but no one could figure out what. He held his hands oddly. His thumbs just looked wrong– more like big toes. And finally, a hand surgeon was able to tell us: he has hypoplastic (underdeveloped) thumbs. He’s missing the muscle at the base of the thumb where the base of the thumb joins the wrist. I had never heard of that before. Likely, you haven’t either. That’s why no one could pick up on it. What does this mean? Functionally, it means his left thumb can’t bend at all. Try to pick something up holding your thumb out straight. Or hold a pencil, write your name. His right thumb bends slightly, but not “normally.” Oh, and yes, of course… he’s a lefty.
He doesn’t like to do things with his hands. He won’t write or draw. He can hold a spoon and fork, but prefers to eat with his hands.
Tristan’s surgeon says around now is a good time to do surgery to help get a bit more function in his left hand. By taking a tendon from another finger on his left hand and transplanting it to Tristan’s thumb, they hope to give him better mobility. It won’t allow him to bend his thumb. There isn’t a surgery that can do this: the muscle and tendon you use for this run all the way up to your elbow (who knew?!).
As I type this I know, looking at my thumbs while I type, that computers will be his saving grace. My thumbs stay straight when I type, and I am sure that he will learn quickly how to type and use a keyboard. He copies Paige and tries to play the piano. I think he might be able to do that too.
I remind myself about the documentaries I’ve seen over the years about people with different disabilities and how they’ve compensated. The YouTube video of the mom without arms who could change a diaper with her feet was one of the most amazing.
I know Tristan’s amazing spirit, his infectious giggle, his sweet and expressive face, his stubborn tenacity will get him through. I know he falls behind on every fine-motor skill evaluation. I know he won’t be able to play many sports well because of his hands or participate in lots of sports or fun activities because of the risk of neck injury.
When he brought home his valentines from school yesterday, his friend Bennett had written his name beautifully on the red paper. Tristan can’t write a letter. He knows them all, but he can’t write them.
My eyes teared up, jealous at the inscription.
I know he’s not going to do that anytime soon.
But I also know that somehow he will.
Someday he will.
And when he does,
that valentine with his name and mine
will go into my special box of keepsakes.
For always.
January 27th, 2011 §
This post was written at a time when I was feeling down, fatigued, weary. I started thinking of all of the things that I was looking forward to when I felt better, things I hoped for the future, things I was thankful for along the way. These would be my payments; these were things that I accepted for my struggle.
……………………………………
A currency of thanks,
a commodity of gratitude,
a medium of memories.
Hugs
smiles
laughs
tickles
sunny days
warm laundry
long baths
newly-mown grass
freshly-baked cookies
hot coffee
baby snuggles
happy endings
clean floors
baby shampoo
good blood counts
clear scans
easy blood draws
short waiting room waits
no side effects
no hidden costs
generous co-pays
quiet offices
pain-free mornings
guiltless decisions
days without regrets
unconditional love
fading scars
new friends
caring surgeons
information
honesty
openness
truth
validation
appreciation
understanding
sympathy
hope
research
progress
empty parking spaces.
someday, my hope:
no more cancer.
January 18th, 2011 §
July 18, 2009
I went by my friend’s house today– the one who was just diagnosed with breast cancer. I wanted to put something in her mailbox. When I opened the mailbox it was full of mail already. She hadn’t taken in yesterday’s mail yet.
Of course she hadn’t. Why should she worry about mail when they are worrying about cancer and what it means for their family?
I left the bag in her mailbox on top of the day-old mail and went away, remembering:
Remembering that time in my life two years ago when I was diagnosed with cancer.
I managed to get the kids where they needed to go (I have no idea where that was).
I did the things I needed to do (I have no memory of what they were).
I went the places I needed to go (I can’t remember where they were).
There is no room for anything else in these days, these days in the beginning.
There is no room for anything else except to hear the words again and again,
as if you need to convince yourself that they are true: “You have cancer.”
There is no room to
do anything,
think anything,
say anything,
be anything,
fear anything,
hope anything,
dream anything,
live anything,
love anything,
breathe anything.
In these days there is no room for anything but cancer.
But these days will pass.
You don’t believe it.
Can’t believe it.
But it’s true:
these days will pass.
Your life will change.
You can make room for other things,
better things.
And once again,
there will be room in your mailbox.
You will remember to get the mail because you won’t be thinking about cancer.
You’ll be thinking about the things you should be thinking about,
that you deserve to be thinking about.
Each day.
Every day.
Today
January 16th, 2011 §
November 8, 2010
One of the phrases I heard often during the emotional events of the past few years is “Things happen for a reason.” The other night while Clarke and I were watching a reality show one of the contestants spoke the same phrase as she predicted elimination from the show.
“I think everything happens for a reason,” she said.
“No they don’t!” I reflexively argued with the screen.
“Why does that make you so upset?” Clarke asked.
“Because it’s just a way that this woman is rationalizing why this bad thing— elimination from a contest she’s competing in— is okay. She’s trying to tell herself that things really aren’t as bad as they are. She’s trying to console herself that there is a purpose in her suffering… that it will lead to something bigger and better, and that is just not necessarily the case.” I said.
I don’t think things happen for a reason and I find it unsettling when people want to tell me that cancer, or my mother-in-law’s death, or anything that has been a challenge has happened as part of some grand plan for something better.
I just don’t believe it. And I don’t want you to believe it about my life, either.
I think things just happen — and when they do, you have to decide how you are going to handle them. Those actions, those responses, can teach you lessons, but they are lessons you teach yourself. You can grow, get stronger, do something that you otherwise never would have. Alternatively, you might learn that you made a mistake and should deal with a situation differently the next time it comes up.
My attitude?
Don’t give away the credit.
Don’t minimize the hurt or disappointment.
Don’t rationalize why it isn’t as a big a deal as it is.
There isn’t necessarily a purpose in suffering; it’s not part of a causal narrative that “passing the test” will get you to the next step. You make your own tests, you find your own lessons. But using the word reason implies that it was given to you, designed for you.
And I just don’t believe that.
December 30th, 2010 §
One of my favorite romantic movie moments occurs between Denys (Robert Redford) and Karen (Meryl Streep) in the movie Out of Africa. The two lovers are out in the African desert at a fireside camp. Karen leans her head back into Denys’s hands. He washes her hair gently, then cradles her head in one hand and pours water from a pitcher, slowly and gently rinsing the soap from her hair after he’s done washing it. It’s a tender moment, to me utterly soft and sensual.
Before I left the hospital after I had a double mastectomy, the staff told me I might not be able to lift my arms over my head. With both sides affected, they said, I’d likely be unable to wash my own hair.
Recovery is slow in the week after surgery. A clear thin tube (like aquarium tubing) is literally sewn into a small hole in the skin under each arm. It carries excess fluid away from the mastectomy site as it heals. Fluid is collected into a small “bulb” and measured every few hours. After certain medical criteria are met, the drains are removed, the incisions sewn up, and then you can finally take that longed-for shower. Eight days after the surgery I received the all-clear. As any mastectomy patient will tell you, the day you get your drain(s) out is a great day.
Only then did I try to lift my arms. And hurt it did. I tried to shrink down into my body. I tried to be a tortoise withdrawing my head back inside my shell, shortening my height so I wouldn’t have to lift my hands so high to reach my hair. It was a painful challenge. I worked up a sweat trying to get my fingers to touch my scalp. I knew it was a questionable proposition. But I thought I could do it.
I thought about that scene— that romantic tender scene from Out of Africa. And I started laughing. I laughed and I laughed and tears came down my face. That cry hurt. It was one of those “I’m laughing and I’m crying and I’m not sure if it’s funny or sad or both and I don’t want to think about it so I’ll just go with it and I hope I’m not on Candid Camera right now…”
I was laughing at the absurdity of it. Here I was. It was my chance to get Clarke to wash my hair. My big fantasy moment. I was going to be Meryl Streep and he was going to be Robert Redford and he was going to wash my hair. Except I couldn’t move without pain. And I certainly wasn’t feeling romantic. I had just had my breasts removed. And I had these weird temporary breasts (tissue expanders) in their place. And my chest was numb. And my underarms hurt from having tubes in them for a week.
Because I hadn’t properly showered I still had purple Sharpie hieroglyphics all over my chest. And I had no nipples. And I had big scars and stitches in place of each breast. And a small angry scar with stitches under each armpit where the drain had just been removed. Let me tell you… this was clearly not how I envisioned beckoning my loving husband to come make my little movie scene a reality.
Now, don’t get me wrong. Had I called him from the other room, he would have done it in a second. He would have been there for me, washed my hair, and not made me feel the bizarre, odiferous (!) freak I felt at that moment. And I would have loved him for it. But I did not want him to see me like that.
In that moment I had a dilemma. What kind of woman was I going to be?
What kind of person was I going to be with this disease from that moment going forward?
I was going to push myself. Do it myself.
I wasn’t going to be taken care of if I could help it. I knew I was going to have trouble asking for help, have trouble accepting help. I knew these things were going to be necessary. But I also knew they were going to cause me problems. That’s the kind of person I am.
I knew asking for and accepting help were actually going to make me feel weaker than I was already feeling. And it was only the beginning. I knew these actions were going to make me feel weaker than I knew I was going to get. I wanted to do everything myself for as long as I could. That was what was going to make me feel alive: doing it myself.
I am not sure I did the best job washing my hair. I probably missed a spot or two. But I did it. And I didn’t ask for help.
Granted, it was something small.
But in that particular moment, on that particular day, that particular act gave me a feeling of pride as big as anything else I could have possibly accomplished.
a postscript: I wish I had been more accepting of help in the early days. I wish I had not seen it as a personal “weakness” the way that I express here. I don’t want to change what I wrote then, but I do want to say that I don’t think I was right to push myself so hard. If I had it to do over again I would accept help more often; maybe not for the hair-washing, but definitely for other tasks that I should have outsourced. I have learned from my experience.
December 26th, 2010 §
I don’t know what it’s going to feel like to walk into the house.
Her house.
It’s been 14 months since my mother-in-law died and in a few hours I’m going to walk into the house that was the last place she slept before she died. The bed she slept in will be there. All of her Christmas decorations. Her towels. Her dishes. All of her things are going to be there.
Christmas has been strange already.
I didn’t send her my itinerary, of course.
I didn’t call her on Christmas Day to thank her for a bounty of presents for the children.
I didn’t call her to tell her about the bracelet Clarke bought for me that I know she would have loved.
There are so many things I didn’t do—and then there are the things I am doing:
I think about what it will be like to walk over the threshold and into the foyer and know she isn’t going to be there to welcome me.
I think about the Christmases past and can’t decide whether to laugh or cry.
I can’t imagine what it’s going to feel like to be in her house without her. There will be nineteen of us together this year. One of my nephews was two days old when she died. One of my nieces wasn’t even born yet. And I know that every time I hold those babies part of me will be treasuring that feeling for Barbara, wishing she were there with us, doing what she loved most: being with her family and snuggling with her grandchildren.
I miss you, Barbara. I don’t cry every day anymore. But I still cry often. And this time of year, perhaps more than any other, just feels empty without you.
I was in Wyoming this past Spring at the court hearing for the man who was driving the truck that hit Barbara’s car and killed her. On a cold Spring dayI was in a car when I went over the exact place she died. It was a spot on a highway, a piece of asphalt in the midst of expansive vistas filled with mule deer and brown grasses. When I passed over that spot, identifiable by the mile marker on the side of the road I waited for it—something. I waited for a shift, a tingling, a sign that it was special. I wanted there to be something so that everyone who passed that mile marker knew that right there, at that spot, one of the most special people in my world died.
And yet, it was just road. Nothing happened. No one would have known.
This trip is different, though. Each and every one of us is going to feel the seismic shift when we walk through that front door this holiday season. In the same blink of an eye it took to cross the spot where she died, I will walk through the doorway and into her house.
It’s time. It’s time to feel that shift.
We keep moving on, but moving on does not mean forgetting. Moving on means weaving the feelings of grief and pain and sadness into our everyday lives.
We must keep going. We have kept going this year.
But it’s not the same. It never will be.
December 24th, 2010 §
Originally written December 25, 2008
(three weeks after my salpingo-oophorectomy and two years after my diagnosis of breast cancer. This was actually the first blogpost I ever wrote.)
I’ve only cried once today. That’s not too bad. But the day is not yet done. Today, again, I’m thinking of the things that cancer has taken from me. First, let me say that I am well aware of the blessings I have. I remember them each and every minute of every day. They are what keeps me going, keeps me fighting. But today, again, I’m pulled into what’s gone, what’s irretrievable, what’s changed.
The body parts are gone, of course. My feeling of immortality. Of safety, of security. I’m vulnerable now. And I feel it. Part of me wants to blaze down I-95 at 100 miles an hour because I’ve stared down cancer, so what can touch me now? Taking risks is a popular grief reaction. On the other hand, a part of me wants to curl up in bed and not come out.
Today, on Christmas, when the childlike wonder is all around, I feel like I am watching it from high above me, as it happens TO ME, around me. I smile, I do what I am supposed to do, I play the “Santa game” with my children. I eat delicious food. I gather up the gift wrap strewn about the living room. I pile the presents in the kids’ rooms. I pack their suitcases for their 3:30 a.m. wakeup for their winter vacation. Half my family is leaving me tomorrow. They’ll be back, of course, but they are leaving. And while they are gone I will ponder the sadness that has settled like a cloud since my latest surgery almost a month ago.
I know I’ll be fine… everyone tells me so, as if to will it to be that way. Even in my darkest moments I know it is only temporary. But I am angry at cancer. Angry at the bad twist of fate that makes me unable to travel this year, unable to be myself, unable to shake this feeling that the dark cloud just seems to keep following me, like those creepy paintings in the museum whose eyes seem to follow your every move.
And knowing the other people who are similarly sad today, those who are remembering loved ones lost, and those who are suffering in pain, and those who will head in for more chemo and surgery and therapies before the year is out are also forever changed by the great equalizer of cancer.
To anyone who reads this and thinks it sounds so odd, so foreign– something that happens to “someone else”… I am so happy for you. I am jealous of you. I remember that feeling, but I am almost getting to the point where I am unable to remember it. I never thought it would be me thinking this way, feeling this way. But it is me. And it’s taking a long time to grieve for that life I thought I would have.
Maybe that’s what it is.
I’m in mourning.
I’m mourning the life I thought I would have.
And only time can help that.
December 22nd, 2010 §
If you knew me, you would know I am resilient. Tough, even in the face of the worst news. You would know I rise to the occasion every time. I might break down before, I might break down after– certainly after. But I will meet the challenges at each and every turn.
If you knew me you would know I smiled my way through many of my hard times, lied and smiled and said “fine” when many a person asked, “How are you?”
If you knew me you would know I am not a negative person, that I am not a pity-seeker, nor a martyr. You would know that I just do the best I can, and want to be dignified and strong, but am not in denial.
If you knew me you would know I love to do things for others, moreso than myself. You would know that in this turbulent portion of my life I have done what I can to show others what they mean to me, and how much I appreciate the kindness of strangers… how the smallest encounters can stay with me forever.
If you knew me you would know that I tried my best to make others feel at ease with my cancer. I always took pride in looking the best I could with what I had left. I created outfits around my scarves, and learned how to draw in eyebrows so that it wouldn’t be too obvious I had none. I tried to set a good example for my children, being honest with them about what was happening, loving them as much as I could, and asking the others who loved them to help them feel special and safe.
If you knew me you would know I care for others. When fellow cancer patients have asked to see what reconstruction looks like, I place my pride and embarrassment aside to honor their needs, their fears, their emotions. While some might (and do) hide their illnesses, I cannot. I have chosen for myself, and for my children, to be open about what cancer is, what it does, what price it demands. I believe that being this way will reduce the shame, the fear, and the confusion for them. Nothing has been more important to me than making sure my children understand what is happening and what the scientific reasons are. That honesty does not come at the expense of hope. Of optimism. Of sheer will. To remain mum about these feelings, these thoughts, these explanations of my experience, is to deny my life for the past four years. To do so says the suffering, confusion, and fear were ill-placed. To avoid talking about the reality of the dangers, the problems, the down-times is to not only be in denial but also to assert that my fears are irrational.
If you knew me you would know that I write not because I wallow in darkness, or think negative thoughts all the time. If you knew me you would know I write so that the emotions can be explored, pushed, pulled, twisted, and shared in order for me to be positive, optimistic, and strong for the rest of the world to see. It is the sharing of these ideas on paper, and sometimes reaching the hoped-for connection to people who read them (whether because they resonate with you, move you, educate you, or make you thankful that you have no idea what the cancer experience is) that keeps my words flowing.
If you knew me you would know I’m just a person, doing the best I can with what I’ve got.
Maybe it’s a bum rap, but it’s my bum rap.
It’s my chance to show what I can do:
Just watch me.
December 20th, 2010 §
Originally posted March 11, 2010 on www.lisabonchekadams.com
In the wee hours of the morning yesterday I gently nudged Tristan from his deep slumber. At 5:15 we were in the car, headed out for the 2.5 hour drive to Philadelphia’s Shriners Hospital to see his hand surgeon.
These trips are always big ones to me. In the first two years of Tristan’s life we focused on his neck problems. With most of his cervical vertebrae only half-formed or fused together, we knew that we’d be told at these visits whether the curvature in his neck had worsened. At one point we were right on the border of intervention. He’d reached the maximum degree tilt of his head; if it went any more, he’d have needed surgery to insert rods and fuse his vertebrae together to straighten the neck permanently. It would have been big.
To us.
But whenever we go to Shriners we see other kids with orthopedic issues. Some are very serious. The most serious. Because the hospital specializes in pediatric orthopedic problems it is a magnet for complicated cases.
It is always humbling to walk into Shriners. Literally to walk in. Many, many children are wheeled into the hospital, unable to walk. A little baby lay in her car seat without any visible problem. But I knew that her sheep-covered blanket hid an abnormality that had brought anxious parents here.
Tristan had his pre-op appointment. He loves his surgeon; Dr. Kozin has an amazing bedside manner and got right into a great chat with Tristan when my son boldly announced as the doctor walked in, “I burped! And then I shivered!” Gee, I was so proud.
We got all of the details about Tristan’s tendon transfer surgery at the end of the month. Because we didn’t need to see his spinal team or get any x-rays, we were able to be back on the road by 10:15 to come home.
Before we left I stopped at the soda machine. I let Tristan put the money in and press the Diet Coke button. A little boy approached and his father hovered behind, watching him.
“What’s wrong with your son?” he said in that way that people who wait in waiting rooms together say.
“He’s got problems in his neck and thumbs.”
The father announced, “Our son has 7 fingers.”
I looked down, expecting to see 7 fingers on one hand. Instead, he had a perfectly-formed left hand, but his right hand was crab-like, with a thumb and a pinkie, but nothing in between but a wide expanse. “He can do everything with it,” the father said, gesturing at the hand.
He was beaming. Beaming. He was so proud of his son, about 3 years old. And he should have been. While some people might have been sad, or ashamed, this father delighted in his son’s accomplishments and accommodations to his physical abnormality.
Children are so resilient: I say it all the time. My son has taught me so much, made me more observant, more aware of life in so many ways. I am thrilled that the most horrific diagnoses and prognoses we were told about his mental development did not come true. His problems are only physical.
Last night, my Twitter friend Kathleen said that a pediatrician had told her, “Kids think about the things they can do, not what they can’t.” I loved that. It’s true. When kids realize the things they can’t do, their concern is only to find a new way to do that same thing.
I love the folks at Shriners Hospitals. They do amazing work in their network of hospitals for orthopedic, spinal cord, and burn injuries on children. They do not take any money from patients for any services they provide. If they accept your case (judged only on the specific problem your child has, and whether they are uniquely suited to help fix the problem, not on economic status) you will never pay a cent for services. I can’t ever resist giving a plug for them because we appreciate their care so much.
We were lost and scared and seeking information when we found out about Tristan’s problems. We’d never heard of spinal fusion surgery and had no clue what we might be in for. To have a surgeon say, “I know what the problem is. I have seen other children with this. If it needs to be fixed I know how to fix it.” Well, those are the words you hang on to as a parent.
In the car on the drive home it hit me how tired I was. I nodded off while Clarke drove and heard Tristan saying, “I want to go back to see Dr. Kozin.”
That’s music to my ears. His ability to be in and out of hospitals, doctors’ offices, and deal well with anesthesia will all help him in his life. With a heart surgeon as a father, and surgeries myself that started at age 5, I’ve never known a time I haven’t been comfortable in hospitals. When I got cancer it served me well.
I wish Tristan hadn’t had these problems, but he does. This is his life. The more comfort I can instill in him about medical care, the better. I think it’s a wonderful life skill to have.
So we have a few weeks until the hand surgery… and then Tristan will get his wish and get to see his surgeon again. We’ll see how he feels about him afterwards…
(to read the next few chapters in Tristan’s hand surgery story please click here)
………………………………………………………………………………..
Original comments appear below
March 11, 2010
7 comments
Stonecutter099
I do a regular search for items on Twitter related to Shriners and by doing so came across your post about “Walking in, Walking Out”.
Thanks for posting this on your blog. I am a Shriner in Edmonton, Alberta, Canada. Posting stuff like this helps to keep Shriners active – knowing that there’s actual people out there with names, instead of being fed stats that the hospitals helped X amount of children last year and spent X amount of dollars. If they actually get to see the progress that you’ve documented, it means much more.
Hope you don’t mind – I’m now one of your twitter followers.
Thursday, March 11, 2010 – 03:17 PM
Sarah
Tristan is an amazingly strong boy. It obviously runs in the family!
Thursday, March 11, 2010 – 04:06 PM
cay0730
I love these posts about your family. As a childless 40ish person, I love this inner view on the parent-child relationship, and the bond of love that’s beyond anything I can imagine. While the decision was right for me, I honor and admire people who go to the ends of the earth to guide their children through every step of life–good and not-so-good.
Thursday, March 11, 2010 – 06:29 PM
mrswhich
I wish that Tristan and my son could be friends – he sounds like an amazing person. No need to wonder why.
Thursday, March 11, 2010 – 09:59 PM
Delia
Touching, thoughtful post! Wonderfully written!
Thursday, March 11, 2010 – 10:37 PM
Theresa
Your post so hit the mark on so many levels. You and I know that children are far stronger than us because we have seen them face problems that most adults can’t handle with such grace and dignity. I always try to remind people of that. When Catherine was diagnosed, I wondered how the doctors could do their jobs with a smile on their faces everyday. It didn’t take me too long to realize that their patients were an inspiration and they drew from that strength. I’m sure everyone at Shriners feels the same way.
Friday, March 12, 2010 – 08:11 AM
KCM
I second Sarah’s comment
Friday, March 12, 2010 – 01:14 PM
December 16th, 2010 §
Last night I posted a piece asking “Do your friends read your blog?” and was thrilled to read all of the answers (if you haven’t commented there, please do). I’m very interested in this subject and it’s spurred another question (as most good questions do).
Published authors: do your friends and relatives buy and/or read your books? I don’t presume that buying equals reading. I am interested in the relationship between social proximity and likelihood of purchase and reading.
Did your mother buy 50 copies and give them out at Christmas? Did she expect you give her free copies instead? Did your friends rush out and buy it or did they figure they’d been there along the way and didn’t need to? Does it depend on what kind of book it is? Did they buy it but then not actually read it and figure they showed support by purchasing?
What about Facebook friends? Twitter friends? Local friends?
Looking forward to hearing your stories on this one.
December 15th, 2010 §
Some of my friends read my blog. Some of them don’t.
My mother reads regularly. My father only reads if I send him a specific link or if my mother tells him about a post. He says it’s often too hard for him to read my posts– they are too raw, too personal. It’s a window into my suffering and he doesn’t want to see me experience so much pain.
Some of my friends find it educational to read about the experiences I’ve had whether it’s to learn about me or learn about the subjects I write about. Some friends find it an easy way to keep up with me in the midst of our busy, family-filled, hectic lives. Friends that live far away subscribe or check in every so often to catch up on how I am and what issues are the current focus of my attention.
But what about those who don’t read the blog at all? I have many friends who don’t. There are many moms I see on a daily basis that don’t even know I have been writing here for 3 years.
One of my closest friends said she almost never reads it because she wants to hear it all from me in person. She wants the opportunity to hear about my thoughts and activities without having to learn by reading on a screen. To her, it’s almost like snooping on my life when she would rather knock on the front door and come in for a visit.
For other people, I think it’s just not their cup of tea; my writing style, subject matter, or format just aren’t appealing. They might like me, they just don’t like this.
There are other explanations, of course, but I am interested to hear from those of you who have blogs: do your friends and family read it? Do they comment to you about it/bring the topics up in conversation? Are your feelings hurt if friends don’t read your work? And does your spouse or partner read your posts? Does he/she comment? Bring it up at the dinner table?
I can’t wait to hear your thoughts on this topic.
December 13th, 2010 §
Clarke and I attended a family wedding this weekend. One of his first cousins got married and my parents stayed with the kids while we drove to the event. Four of Clarke’s brothers and sisters attended and we were able to see many family members we hadn’t seen since the memorial service for Barbara a little over a year ago.
Barbara’s three sisters were there, of course, and one of her brothers. It’s a large family and we all have a great time visiting when we have occasions to see each other. It was fantastic to have a happy reason to gather; so often as we age it seems we only see each other to mourn.
And while we were happy, while we loved seeing a young bride and groom start their lives together, we couldn’t help but ache every moment for the special one who was not there. Barbara’s absence hung over the weekend. For the first time since she died I didn’t have to distinguish one “Mrs. Clarke Adams” from the other. We’d had the same name for the last 13 years and over the weekend I missed the confusion it often gave us at check-in time or seating assignments for dinner.
It wasn’t until the groom danced with his mother (Barbara’s sister) that the emptiness became overwhelming. This particular sister resembles Barbara the most: her eyes, her expressions, her hair. And as she danced with her son we all could not help but cry: my youngest brother-in-law, still in his 20s, would not have that dance with his mother when he gets married.
I talked about Barbara a lot this weekend; I couldn’t help it.
My anger is still here: she should be here enjoying these things. It is someone else’s fault she isn’t (see here for original newspaper piece and here for my piece about the court hearing). Somehow, to me, that makes it worse. Her body didn’t fail, she didn’t get a disease. Someone made an egregious decision and she paid the price with her life.
I’m not over that anger and I don’t think I ever will be. Every happy event is one we are not sharing with her. And while no one’s life can go on forever, when it’s taken without warning and too soon it takes time to adjust to. It’s too much to swallow in one gulp, and this bitter taste is dissolving very slowly. This weekend was hard. Christmas, which has always been synonymous with Barbara, is going to be even harder. I know there are many people reading this who are grieving losses this year, and the holidays are always difficult. My heart goes out to you all.
December 13th, 2010 §
Originally published on www.lisabonchekadams.com on March 9, 2010
Now that I have been writing this blog, family and friends sometimes ask me to write something and speak at special occasions. Yet, earlier today in court and at Barbara’s memorial service a few months ago I remained mum.
While my love for her is obvious, my respect, my admiration, my sense of loss, I remained an observer while the truck driver who came into my in-laws’ lane and hit them head-on appeared in court today for his change of plea hearing.
Family members are allowed to read victim impact statements. Spread across the entire back row of the small Western courtroom we sat in wooden pews. Her six children, her husband, one son’s girlfriend, and me.
The nine of us sat as an army.
Wearing somber colors, we sat clutching tissues.
We cried.
We squirmed.
We jiggled our legs with nervousness and anticipation.
We stared at the back of that truck driver’s head.
We stared at the back of his sister’s head.
His mother’s. His father’s.
At some point when the judge was deliberating I couldn’t take it anymore.
And then I did something that’s become routine for me.
I picked a spot on the ceiling and I stared at it.
I’ve come to do this as my coping mechanism for pain,
for feelings of claustrophobia,
for enduring the seemingly unendurable moments
I’ve had so many of the past few years.
When I’ve been in pain,
in agony,
sick,
nauseated from chemo,
embarrassed during procedures,
I pick a spot on the ceiling.
And I don’t let it go.
I don’t let my gaze waver.
In some medical offices I visited repeatedly I used the same spot:
A sticker on the ceiling indicating a light switch,
A brown spot from water damage,
An intersection of metal latticework that if I stared hard enough
seemed to have a dot in the middle.
And so today,
when it seemed the plea bargain
would not, could not, be changed,
tossed,
reconsidered, or
modified,
I picked my spot.
I picked my spot and did not let it go.
I heard the sniffles,
the sobs,
the exhales of my loved ones realizing the punishment that seems so inadequate would stand.
My brothers and sisters-in-law didn’t need my words today.
Theirs were so poignant,
so heartbreaking,
so true.
While the words swirled inside my head,
this was their day to describe their pain.
While I come here and do it weekly,
it was their turn today.
I was so proud of them.
Barbara would have been so proud too.
That’s the irony, of course:
their finest moments,
their displays of character and strength,
have come to the forefront in her absence–
because of her absence.
And everywhere we go people say
that her six children are a testament to the mother she was.
And they are.
A family unit so strong,
so united,
so bereft at her loss.
Twice today we drove on the very highway where the car crash happened.
Twice today we crossed the very place where she last lived.
And as we approached the spot both times I sat in the moving car and waited.
I waited for there to be some type of shift,
some type of energy.
Some kind of
SOMETHING.
But it was just road.
Just pavement.
Just a place on a road.
And both times I could not accept it.
It did not seem real.
Our lives changed on that spot.
Her life ended on that spot.
In the middle of the expansive countryside dotted with wind turbines and packs of mule deer
dearest Barbara departed this world.
I can’t write enough words for her.
I can’t capture the ache and sadness I feel.
Not only for myself–never only for myself– but so much for my children…
for all of her grandchildren who missed years of knowing her,
many of whom will never know her.
I’ll never write much of what I want to say.
I won’t put it here where it could be painful for those who miss her and love her.
I can’t write everything I want to about the man who did this.
I don’t want to undermine any future court activity.
Sometimes the hardest thing is knowing when to keep quiet.
I’m working on it.
Truly.
Tonight I fly thousands of feet in the air
as the plane shakes and trembles
with turbulence.
And while I hate to fly
I wouldn’t have been anywhere else today.
So while the plane lurches a bit
I’m going to turn off the computer,
pick my spot somewhere on the ceiling,
and I’m going to stare at it.
And I’m not going to let it go.
Because I can get through this.
I can.
I can get through this.
We can.
December 7th, 2010 §
I didn’t know Elizabeth Edwards. In fact, I wrote a piece critical of her when she initially stood by John after his affair. I was disappointed when she gave an interview on CNN in May of 2009 and spoke only of John’s “imperfection” rather than calling him the cheater he was and kicking him to the curb. I was angry she hadn’t used her interview time to talk about herself, her cancer, her life: the topics I wanted to hear about. I was angry at her for not claiming her remaining years of life as her own.
So why am I sitting with tears in my eyes because she has died?
I cry because it makes me feel vulnerable and scared of what this disease can do to me: what it did to her.
Yes, I know… there are plenty of men and women who get cancer, have treatment, and stay in remission for the rest of their lives. And, in essence, isn’t that what every cancer patient hopes for, as Betty Rollins wrote, “to die of something else”?
I don’t think it makes me pessimistic, depressing, or negative to think that I am vulnerable.
It’s the truth. It’s my truth.
Anyone who hasn’t been to the oncologist with me to see my risk-of-recurrence charts, my mortality charts, my decision-making discussions along the way can’t say to me “Oh, don’t worry, that won’t be you.” No one, including me, knows how it will go.
People tell me: stay strong, just think positive, you can’t generalize from her situation.
I respond: I am strong, I hope for the best. I don’t think positive thinking is going to save me if there are remaining cancer cells still in me.
I hope that people won’t say to someone who has been diagnosed with cancer, “Don’t worry, what happened to Elizabeth Edwards won’t happen to you.” Because while we do everything we can to ensure we die of something else, it just isn’t always the case. In 2006 her oncologist told her that there were many things going on in her life, “but cancer was not one of them.” Things change quickly, cancer can recur when you least expect it.
I have sympathy for her family. I cry for her children. I am saddened about the years she spent with a man who didn’t deserve her. I am angry about the time she wasted on him. I hoped she would be an example of someone who would keep cancer at bay.
I grieve for that hope, now gone.
December 1st, 2010 §
August 18, 2009
Summers bring change. The end of the summer signals the start of school for children, and for some it’s their first day of school ever. My youngest child, Tristan, will start nursery school in a few weeks. This month has brought the inevitable developmental milestones of potty training and sleeping in a big bed. My oldest child, Paige, will start middle school. She went to sleepaway camp for the first time this summer (and loved it). My middle child lost his first two teeth.
As I sit and watch and listen to the waves on our beach vacation I know the summer is drawing to a close. Some of you reading this are already sending your children back to school.
The months and years go by. Like all of you I mourn the quick passage of time. “Where did the summer go?” I hear my friends asking. Projects we hoped would be accomplished — tasks we hoped would be done — sit unfinished. Organizing photos, cleaning out a closet or a room, or reading that book a friend recommended; many things went undone in the last eight weeks.
Maybe you were lazy, maybe other things came up, maybe you were preoccupied with family obligations. Maybe you had an unexpected cancer diagnosis, maybe you got the flu, maybe your parents’ health was sub-par.
Regardless the reason, there can be a bit of disappointment when summer ends. The children we send back are taller, older, more mature. They’ve had lots of experiences to tell their friends about. Maybe they’re in a new school, maybe they’re now the oldest in school, maybe they’re now the youngest. New bus routes, new starting times, new friends, new backpacks, new teachers.
Some children will be starting back with a new experience to tell their teacher and friends: “This summer my mommy got cancer.” That one will not be an isolated instance, unfortunately; women around the country will be sending children to school with that summer report.
Growth happens in fits and spurts, not with smooth sliding grace.
With each phase comes
pain,
discomfort,
unease.
Restlessness,
sleeplessness,
yearning.
When I had the tissue expanders in my chest to make room for the implants that would replace my breasts after the mastectomies, every week my plastic surgeon would add to them. And each time after a “fill” they would feel tight. The skin would not be big enough for the volume inside, and it would react. The skin would feel the pressure and grow, that was the point of the process. Until the skin could replicate there was achiness, tightness, a ripping or tearing feeling.
A similar sensation happens during the days during pregnancy when you feel your belly just can’t accommodate the growing baby inside it. And yet it does. If it happens too fast you get a stretch mark, a sign your skin just couldn’t keep up. The growth was too rapid, too harsh, too vigorous.
I often wonder if mothers and fathers get psychological stretch marks when we are asked to accommodate changes we’re not quite ready for.
What can we do? What options do we have? None. We must “go with the flow” and do the best we can. Our children grow and change whether we like it or not. We do them no favors by trying to protect them, coddle them, and keep them young. We give them wings to fly when we give them tools to be
confident
and caring
and inquisitive
and trusting
individuals.
I am moved to tears as I watch my children grow.
I am moved by the succession of infancy, childhood, and adolescence.
I know that as a mother I lack many skills I wish I had.
But I also know that the words I have written in my blogs and essays will one day be a gift to them too.
Not a gift to the children that they are, but instead a gift to the adults that I am raising them to be.
Each August or September as they go back to school I marvel that another school year has passed and yet another is here.
I mark time differently now. I mark anniversaries not of weddings, but since diagnosis, since mastectomies, since chemotherapy began and since it ended, since implants, since Tamoxifen, since Arimidex, since oophorectomy. They are not just dates; they have meaning. They are meaningful for doctor visits and tests I must have done and dates I can stop taking drugs and dates I must know for other treatments.
No matter how you measure time it always goes too fast.
The growth happens too fast.
And the growing pains hurt for me.
The stretch marks might be invisible this fall, but they are surely there.
November 25th, 2010 §
After my post yesterday about missing loved ones at the Thanksgiving table, many people were intrigued by the Adams family tradition of Cranberry Ice. I, too, had never heard of it prior to meeting Barbara. Once you’ve had it, it easily becomes a regular addition to your table. I am sharing it here so that others may decide to fold it into their holiday celebrations, too (I think it is a lovely addition to Christmas dinner, so maybe you want to give it a try then).
The way we serve it is as a side dish, in place of cranberry sauce. The tart, sweet, cool flavor is delightful.
I like to make a double recipe so there are leftovers… I am giving the instructions for that; if you want to halve it, you may. Because you need to beat it with a mixer as it freezes, don’t make it late at night.
You will need:
2 bags of fresh cranberries
2 packets Knox gelatin
Lemon juice
2 cups of sugar
2 cups of water
Freezer-safe bowl and a food mill, ricer, or strainer
Directions:
Boil the cranberries fully until the skins fully split. Drain the cranberries and run them through a ricer, food mill, or strainer to remove the skins. (I use a food mill that Barbara gave me. It has a hand crank on the top and you turn it around and around and the skinned cranberry puree drops out the bottom. A more updated version is here). Once you have all of the cranberry puree in a freezer-safe bowl, set aside. Take the 2 packets of gelatin and dissolve in 2 cups of water. Add this to the cranberries. Add about 2 cups of sugar (less if you like it very tart). Then add a bit of lemon juice to taste.
Take the bowl and put it in the freezer. As it freezes, take it out a few times (2-3) and beat with electric beaters for about 30 seconds to fluff it up. This will keep the texture airier. If you don’t do this, the consistency will be far too dense and hard. Once frozen, serve with your meal using an ice cream scoop. It doesn’t melt immediately because of the gelatin. Barbara always served in lovely cut-glass footed bowls. I haven’t found ones I like yet, so mine was served in regular bowls today.
November 21st, 2010 §
Never did we think we would share the bond of cancer. It’s certainly not something any mother wants to have in common with her child. And I know (now that I am a parent myself) that it must have been harder for her to hear MY declaration of cancer even more so than her own.
She was a trailbreaker for me. Like the sled that gets sent ahead to smooth and mark the trail of the Iditarod (I have dogsledding on the brain currently), my mother laid tracks for me. She was diagnosed a few years before I was, and I watched as she dealt with her illness. On her “off” weeks from chemo, when she felt well enough, she always came to visit. I think she needed to see some of her grandchildren and remember why she was going through the difficult treatments. She was Nana, she was Mom… she wasn’t a cancer patient.
I had never known anyone with cancer. I had never seen what happens to someone during chemo. And, to be fair, I only saw her after the worst was over. Just like I did, when the time came, she retreated to her bedroom during the worst days and kept it a private matter. But on those alternate weeks, I watched my mother’s head go bald. I watched her body go hairless. I watched her weaken, and suffer. I saw her remove her wig once the children had gone to bed and put on a green turban to finally give her head a break after a long day.
But I also saw something else in my mother. I saw the unfailing determination to be strong. I saw her desire to protect those around her. I saw her selfless devotion to family, and the importance of putting on a brave face. Most of all, I saw the smile. The gorgeous smile that lights up a room, always with bright red lipstick. My mother was extra beautiful to me in her display of courage, conviction, and unwavering persistence.
Neither of us knew that she was actually teaching me by example; within a year of her hair growing back in, mine would be coming out. We had no way of knowing we would soon start trading books, articles, and reports on advances in oncology.
I have learned many lessons from my mother. But for today, the one I am thinking about is one of the most valuable. You never know who’s watching you. You never know what’s around the corner. You never know when it’s going to be YOU… when it’s going to be your turn.
Trailbreakers are all around us. We just need to watch and pay attention. We need to learn lessons where we can. We need to have reserves we can tap into. Like a fallout shelter stocked for an emergency, we need to have people we can call on, experiences we can draw on to reassure us when crisis strikes. My mother did that for me. When it came to be my turn, I wasn’t ready; I wasn’t prepared. I wasn’t strong or brave or tough. But I did know I could get through it. After all, she did, and just knowing that fact helped me. I got tougher. I got braver. I got stronger. But having watched someone close to me go though some of the same experiences meant a lot.
I don’t think of myself as a role model. But I also know the reality: some of my friends will eventually get cancer. And I hope that my experiences can help them get through it, and see that it can be done. One reason I have decided to be so open and public about my life is that I wish I had been able to connect to someone my age, and hear what she had to say. Cancer’s impact on me– the changes in my life, my body, my relationships with my spouse, children, and friends– cannot be underestimated. Two years after my initial diagnosis, I still have lots to work through.
“If you want to know what the road ahead is like, ask someone who is on her way back home.” I have been there, and feel it’s my duty to tell what I’ve seen.
November 21st, 2010 §
Sometimes I think this quality manifests itself in perceived negativity. Every so often, Clarke accuses me of focusing on the negative. I can’t say I think he’s wrong, I just think he’s wrong about what drives the concern.
It’s not that I focus on the negative. I just want to be prepared for whatever I am about to confront—good or bad. Of course, being prepared for bad things is harder. But I’m not even sure that I’m ready for good things to come my way.
Here it is in a nutshell: I have a terrible fear of being unprepared.
I never entered “suitcase parties.” These type of lotteries were popular in college. A business would purchase 2 round trip tickets and donate them to a sorority (or other organization) as part of a fund-raiser. You packed a suitcase and went to the drawing. If they chose your name, you and a guest would leave directly from the party to go to the airport.
The twist was, you had no idea where you would be going. You packed your suitcase and showed up without knowledge of whether you were headed to the Caribbean or Vermont. It could be anything, so you had to pack accordingly.
Sound fun? Not to me. Not appealing—at all. I never entered any of them.
I was always like this. But it really changed in December of 2006. The one time I wasn’t worried I got bitten on the ass. When I went back for my second mammogram I wasn’t concerned– in the least. There was no lump, I had just had a clear mammogram 18 months earlier, I was 37 years old, and I had had multiple benign lumps removed throughout my life. Every time I had needed a lump removed, I had worked myself into a tizzy of fear. And each time I had been proven wrong: the lumps were benign.
So to have vague density issues in one breast a few months after I stopped nursing my third child did not provoke worry in me at all.
So when they kept taking pictures I wasn’t worried. When they did the ultrasound I wasn’t worried. When the technician called in the radiologist to look at the ultrasound images I wasn’t worried. When they took me into a separate “discussion room” I still wasn’t worried.
But then the radiologist said words that scared me… hearing words I wasn’t prepared for was devastating.
It’s as if the words she said weren’t in my vocabulary. And therefore, when I heard what she was telling me… it’s probably cancer… I had no reflex in place to catch me while I fell. Here I was, unprepared in every way to digest the news.
So from then on I was fixated on preparing for what lay ahead. I didn’t want to be unprepared for the biopsy, for the double mastectomy, for the chemo. I walked through the world in a blur for that month while decisions were made. My body shut down and I was anxiety-laden. I knew I needed to get a plan. In getting a plan I would feel more powerful, more in control. And I did. Once my decisions were made about surgery and adjuvant therapy (chemo and long term hormone therapies), I think I became resigned. I needed to know what to expect. I needed to know what I might be able to do to take care of my family and how to carry on during what would likely be one of the toughest physical and emotional challenges of my life.
When my hair started to come out in clumps on the morning of my second round of chemo I went to the garage with my clippers and shaved my head. I needed to take control.
“What ifs” are my lifeblood. What if my cancer comes back? What if I die from this? What if I have such a poor quality of life that it’s not worth it anymore? What if I made a mistake being as aggressive as I have been?
The passage of time is helping me with these questions. I know you can’t control it all. And I don’t have the energy to worry all the time. But I also know that in being prepared I am self-soothing, rubbing my mental worry beads, trying to reassure myself that things will be okay.
I’m not sure I believe that yet. It’s a daily struggle. But I learned my lesson by dropping my guard. As a student of life, I failed once. I won’t do it again. Control what I can, be prepared for what I can’t. That’s as far as I am right now.
November 21st, 2010 §
Many of my friends are going through it. You know, it. The anomie that occurs for stay-at-home parents when their children become more independent and they are left at home wondering where that part of themselves, independent of spouses and children, went. “What do I do next?” they ask themselves. “Where do I go from here?” Often in limbo, not having enough time to get a full-time job or needing the flexibility for school vacations and afterschool hours, stay-at-home parents struggle to re-enter society with their (often) outdated skills, wardrobes, and knowledge base (the words to Wiggles songs do not count as expert knowledge).
I’m being spared this aimlessness because of my cancer diagnosis three years ago. My youngest child is 4, he’ll start kindergarten next fall. He has some physical issues, abnormalities in his hands and neck which mean I’ll need to spend more time dealing with the school system about his special needs. He’ll need physical and occupational therapies for the foreseeable future, but he’ll be in regular school from 8:30 to 3:00 every day.
Now that I am in remission my weeks are still full with doctors, managing side effects, and helping others going through the diagnosis and treatment process. But more often than not I’m at the computer writing. I’ve carved out something that gives my life meaning apart from my family. And while my cancer history has involved all those who know and love me, I still think of it as mine. My cancer. Why? Because as much as someone with cancer can try to explain what it is, what it feels like– what the cancer experience is— I am not sure we ever can fully succeed. Like trying to explain the love you have for a child to someone about to have their own child, you just don’t get it until it happens to you.
And so, the cancer is mine. And that possession is providing my step to the next phase of my life. I don’t wonder what I’m going to do with my time… I just wonder if I will have enough time to write all I want to write– if I can express for some who cannot express for themselves what this cancer experience can be.
October 15th, 2010 §
Part one: Tristan’s Valentine
My son Tristan is about to turn 4. I haven’t written about him much here. I started thinking about why that is, given that his life has given us more twists and turns than either of our other children. I think it’s precisely because he’s had his share of hardships that I have felt overprotective of him. But it really needn’t be that way.
Tristan’s physical problems are a bit unusual. For those of you who don’t know him, he had open heart surgery at seven months old to move an artery that was compressing his trachea, preventing him from breathing properly since the time he was born. He required feeding therapy to learn to eat after having trouble combining eating and breathing until that point.
He also had problems with his neck. From birth his head sat at an awkward angle. Doctors thought it was muscular torticollis that could be fixed with physical therapy. We did a DOC band to correct the flattened head he had as a result of this “fixed” neck position. But after a while my intuition told me it wasn’t muscular. I felt it was orthopedic, something that would be an extremely rare abnormality. I took him to an orthopedic surgeon who confirmed our fear: Tristan’s problems were more serious than just a tightened muscle.
We were told various diagnoses for his problems when he was about six months old– everything from cerebral palsy to Goldenhar Syndrome. But in the end, when pressed for a diagnosis they jokingly say he has “Tristan Adams Syndrome,” a combination of rare defects in his spine and hands.
The cervical vertebrae in his neck are not formed correctly. Half-formed, or fused together, the vertebrae near the base of his brain are mangled, appearing on x-rays, CT scans, and MRIs almost indistinguishable from one another. His adorable exterior hides a jigsaw puzzle-like appearance on the inside.
While the abnormal vertebrae caused him a severe head tilt to one side as an infant, it now appears from the outside as almost straight. As he’s grown his “z-curve” (two striking jogs in his neck which have thus far balanced eachother out; either one alone would have required surgical intervention already) has improved with growth.
We watch, we test, we monitor. If the congenital scoliosis (meaning a curvature of the spine since birth) worsens, he’ll need surgery to fuse his neck in a fixed state with rods and screws. His neck would not grow any more, and he’d have no mobility in it. Imagine having your neck in a position where it’s extremely short and you can’t turn it at all unless your whole upper body goes with it forever. So far, we’ve escaped this. But we are told that every growth spurt brings risk.
His other oddity are his hands. For the first year of his life we knew something was wrong, but no one could figure out what. He held his hands oddly. His thumbs just looked wrong– more like big toes. And finally, a hand surgeon was able to tell us: he has hypoplastic (underdeveloped) thumbs. He’s missing the muscle at the base of the thumb where the base of the thumb joins the wrist. I had never heard of that before. Likely, you haven’t either. That’s why no one could pick up on it. What does this mean? Functionally, it means his left thumb can’t bend at all. Try to pick something up holding your thumb out straight. Or hold a pencil, write your name. His right thumb bends slightly, but not “normally.” Oh, and yes, of course… he’s a lefty.
He doesn’t like to do things with his hands. He won’t write or draw. He can hold a spoon and fork, but prefers to eat with his hands.
Tristan’s surgeon says around now is a good time to do surgery to help get a bit more function in his left hand. By taking a tendon from another finger on his left hand and transplanting it to Tristan’s thumb, they hope to give him better mobility. It won’t allow him to bend his thumb. There isn’t a surgery that can do this: the muscle and tendon you use for this run all the way up to your elbow (who knew?!).
As I type this I know, looking at my thumbs while I type, that computers will be his saving grace. My thumbs stay straight when I type, and I am sure that he will learn quickly how to type and use a keyboard. He copies Paige and tries to play the piano. I think he might be able to do that too.
I remind myself about the documentaries I’ve seen over the years about people with different disabilities and how they’ve compensated. The YouTube video of the mom without arms who could change a diaper with her feet was one of the most amazing.
I know Tristan’s amazing spirit, his infectious giggle, his sweet and expressive face, his stubborn tenacity will get him through. I know he falls behind on every fine-motor skill evaluation. I know he won’t be able to play many sports well because of his hands or participate in lots of sports or fun activities because of the risk of neck injury.
When he brought home his valentines from school yesterday, his friend Bennett had written his name beautifully on the red paper. Tristan can’t write a letter. He knows them all, but he can’t write them.
My eyes teared up, jealous at the inscription.
I know he’s not going to do that anytime soon.
But I also know that somehow he will.
Someday he will.
And when he does,
that valentine with his name and mine
will go into my special box of keepsakes.
For always.
Shortly after that post, on his 4th birthday, Tristan had his tendon-transfer surgery.
…………………………………………………
Part two: It’s My Birthday and All I Got Was This Lousy Cast
My son Tristan had surgery yesterday. With no food starting at 8 PM the night before, and no drinking after 7 AM the morning of, Tristan was wheeled back to surgery at 3 in the afternoon. He asked only once for something to eat and drink. All day he played with Matchbox cars in his hospital bed waiting. Never a tear, never a complaint. A few times he gently asked, “Can we go home now?”
Surgery finished at 6 and was a success. Our fantastic and caring surgeon at Shriners Hospital, Dr. Scott Kozin, decided in the operating room after seeing the tendon in his ring finger that it wasn’t sufficient; he closed up that finger and used the middle finger instead. The tendon was transferred, the ligament stabilizing his thumb was tightened, the web space between his thumb and pointer deepened. All went well and a large cast was placed on his arm from fingers to shoulder.
Rather than a typical heavy fiberglass cast he received a more modern version of immobilization. To avoid having to “saw” the cast off in 3 weeks, this one will unwrap. For this reason, the pediatric patients are not as scared when the casts come off. These are not usable in every situation, but it was nice that he could benefit. Unfortunately, the worst part will be that there is a pin in his hand stabilizing his thumb right now. That will be pulled out when the cast comes off. I predict that removal is not going to go over too well.
When he woke up, Tristan’s first concerns were for water and his cars. Within an hour of awakening his personality re-emerged. As he started drinking and eating his spark returned. By 9:15 PM we were on the road, anxious to get him home. By midnight he was tucked in bed with a dose of pain meds and his stuffed animals.
The orange striped handmade pillowcase with dog pulltoys on it was a gift from the hospital as well as a cute quilted blanket with trucks on it. Every child gets a set of these handmade comforts.
A nurse found out it was his 4th birthday yesterday and rounded up some toys for him… cars and a book that makes fire engine sounds. He had a stash of toys to carry home from the hospital.
It wasn’t a great way to spend a birthday, but in the long run, it was a good sacrifice. There’s still some leftover cake for him to eat later today. The best present of all was having him come through surgery well and be able to come home with us without even having to spend the night. While there, we saw so many children with orthopedic injuries/issues that would keep them at Shriners for weeks or even months.
About 2 hours after the above picture was taken, Tristan looked like this:
That smile is the best present he could have given me.
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Part three: Have a Nice Day
Tristan recovered well from the surgery. I won’t show the picture of what his hand looked like when they removed the cast and there were black track marks of sutures all across his hand and wrist. The human body is amazing, healing itself after having so many things done to one tiny hand. Now, seven months later, all of the incisions in his hand are almost invisible, the only obvious one remaining is the long diagonal one on his left wrist where one end of the new tendon was attached. It’s still rather red but I know in time it will fade.
When the stitches came out Tristan needed extensive physical therapy to accomplish three tasks: stretch out the new web space, keep scar tissue from forming and tightening up the area, and get his brain used to communicating with the tendon in its new location.
A few months ago we encouraged him to hold a pen again, a paintbrush, any implement. If there’s one thing Tristan has always refused to do it’s written expression of any kind. The coordination and finger strength it takes to hold anything in his hand and make it do something deliberate is not an easy or enjoyable task for him.
About six weeks ago he started writing more. By “more” I mean completing a word without stopping. He had never colored a picture or fingerpainted. But through trial and error we patiently have worked with him to try a variety of options for writing. This week his therapist and I tried a dry-erase white board again. We’ve found that just because something doesn’t work once doesn’t mean it won’t work at a later date.
The combination of the marker making a smoother stroke (rather than the shaky, wavy lines he usually makes with pens, pencils, or crayons) and the smooth writing surface “clicked.”
The therapist was here at 6:45 a.m. on Tuesday morning for Tristan’s appointment. I took Colin to the bus and when I got back home and opened the door to the kitchen here is what I saw:
Now, to be fair, he did use his orange marker to trace the letters over the top of ones written in yellow by the therapist. It was a struggle, and took a lot of work. He still can’t write letters on his own without tracing. But it was a victory. It was a step. No mom could have been happier or prouder than I was. It might take him a little bit longer but he’ll get there.
And I will be there to hug him after every little step, the way I did when I saw this.
Tristan’s wish came true: I had a nice day.
In fact, I had a great day.
I remember the old days.
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