October 17th, 2014 §
My last post (“The Hardest Conversation”) showed you what a conversation with my teen daughter was like when we talked about my diagnosis of metastatic breast cancer in 2012. Today I wanted to share a conversation with my youngest child (now 8) that happened last year so you can see the variation in what their concerns were and how I dealt with each one.
As always, with cancer, age-appropriate explanations are important. Another vital piece of advice I’d like to share is that with all children, but especially young children, it is important to talk more than once about the topic. At the end of the first conversation I recommend asking young children, “Can you tell me what we talked about today?” to see if they have absorbed the most important pieces of information and that these pieces are correct. A day or two later it is always a good idea to ask, “Now that you’ve had time to think about our chat, do you have any questions?”
The following post was written in late 2013 on the eve of the surgery to put my medi-port in.
………………………………………………
“Why do you have to have surgery tomorrow?” seven year-old Tristan asks from the back seat after we drop off his 11 and 15 year old siblings this morning.
“Because I need to have something put in my body called a port. It’s a little container made of something cool called titanium that lets the doctors put some of my medicines into my body in an easier way.”
“Can you see it?”
“Yes, you will be able to see that there is a lump under my skin, about the size of a quarter. But you will only see the lump. You won’t see the actual thing because that will be inside my body. You know how I have the scar on the front of my neck? It will be like that, here, off to the side, same size scar but with a bump under it.”
“Is it like the bubble I had on my neck when I was a baby?”
“Well, that was a skin tag, so that was a lot smaller. And they were taking that away. This is something they are putting in to help make it easier to get some of my medicines. And you know when you go with me and I have blood taken from my hand? Well now sometimes they will be able to just take it from there instead. So it helps with a few jobs.”
“Will you have it forever or do they take it out when your cancer goes away?”
(Driving the car, trying to keep tears in check, knowing this is a vitally important conversation. I’ve explained this to him before but I know it’s hard for him to understand.)
“Well, honey, remember I had cancer when you were a baby? Well, this time the cancer is different. A lot of the time you can have cancer and the medicines and surgeries make it go away and it stays away for a long, long time. Maybe even forever. Sometimes any cancer cells that might be left go to sleep and just stay that way. Sometimes you have bad luck and they wake up. Mine woke up after six years. And now the cancer cells are in places that I won’t be able to get rid of them all for good. I am always going to have cancer. This time my cancer is the kind that is always going to be here.”
“You’ll always need medicine. And the thing they are putting in?”
“Yes, honey, I will always need medicine for my cancer. And I will probably need to have the port in forever too.”
Long silence.
“I am glad you are asking me questions about it. I want you to always ask me anything. I will try to explain everything to you. I know it’s complicated. It’s complicated even for grownups to understand.”
Long silence.
“Mom, did you know people whose eyes can’t see use the ridges on the sides of coins to tell which one they are holding? So if you have a big coin with ridges that person would know it is a quarter?”
“That makes sense. How did you learn that?”
“At school. And so if it’s smooth you know it’s a nickel or penny. It’s important that they know what coin it is.”
“I think you’re right. That is very clever.”
( I stay quiet waiting to see where he will take the conversation next.)
“Remember when my ear tube fell out and was trapped in my ear and the doctor pulled it out and I got to see it? It was smaller than I thought it would be.”
“Yes, I thought the same thing.”
“I really wanted to see it. I wanted to see what it looked like.”
“Me too.”
“Can you show me a picture of it?”
“Of what?”
“The thing for tomorrow.”
“The port?”
“Yes. Or don’t you know what it will look like?”
“I know what it will look like. Sure, I will show you on the computer after school.”
“Okay.”
“It’s time for school but I am glad we talked about this. I want you to keep asking questions when you don’t understand something. I love you, Tristan. I hope you know how much. I know this is hard for all of us. I wish it were different. But we are going to keep helping each other. And talking about all of this is good. We can do that whenever you want.”
October 15th, 2014 §
From the time my oldest child, Paige, was born everyone kept telling me, “Just you wait.”
When she made it through the terrible twos without much of a tantrum everyone kept telling me, “Just you wait.”
When she made it through elementary school and a move from NYC without trouble they kept saying, “Just you wait.”
“Just you wait,” they said, “girls are drama. You got lucky before. But the teen years? Oh boy… just you wait.”
Today she prepared me a bowl of soup and brought it up to my bedroom. I was resting after my surgery to remove malignant lymph nodes and tissue for testing yesterday, the room was dark. I invited her to come snuggle with me in the big bed. We’ve never let our children sleep in our bed so they think climbing in is a big treat.
I asked her if she wanted to talk about what was going on, about my news about having metastatic breast cancer. She did.
And so it began: an hour-long talk that started with her first question, “Are you scared?”
She asked questions about genetics and risks of getting cancer to what kind of treatments I might need.
She asked me again, as if to confirm for herself, “It’s not curable, right?”
We talked about my writing, about being public with my health status, about being open and honest with her and her brothers.
I told her that yes, I was scared. I explained that my fear usually comes from the unknown, in this case just how I will respond to treatments. I told her it was okay to be scared. That it’s normal, that sometimes fear makes you brave enough to do things you don’t think you can otherwise do.
I told her that I understood that sickness could be scary, that I didn’t want her to be afraid of me as I got sicker someday. “I would never be afraid of you, Mom. I’m only afraid of cancer,” she said. My heart squeezed and thrashed and the tears flowed.
We talked about her desire to be a doctor, a surgeon. She wanted to know what all of my surgeries and treatments had done. She wanted to know the difference between cancer “stage” and “grade.” We talked about the genetics of breast cancer and discussed the BRCA-1 and 2 genes (which I do not have). We talked about hormones and their role in puberty, menopause, and cancer. She wanted to know why outcomes are so variable. How will we know if treatments are working? I told her about the importance of her monitoring her own health, how hopefully we will have better screenings down the road.
I told her that for now I want her to live her life, for our house to be as normal as it can be for as long as it can be.
I told her she should try to focus on her schoolwork, her sports, and her friends. She told me that I was more important.
I told her that eventually I might need someone to help take care of me. “I will take care of you, Mom. You’ve always taken care of us,” she said.
We talked about her brothers, ages 11 and 6 and how she was going to have to help them. And her dad too. “I’m really good with hospitals and medical things, Mom… I’m just like you.”
She said she liked that I was open about it. That people knew. She thought it was best to be honest and appreciated the offers of support she’d received from friends and adults she knows.
I told her that what we were doing, lying there talking for an hour together about this, was the most important thing we could be doing today. I told her there wasn’t anything more important to me than my family. My job is to help them deal with this. Whatever this is.
I explained that what she needed from me would likely differ from what her brothers need; she is older and each of them would have different needs along the way. It’s my job to figure that out and address it. And my husband’s job now, too. How I take the lead on this will be important.
She asked if that was a lot of pressure, to have so many people reading my words, watching what I was doing. I told her it was. I told her it was my way of trying to help people. The same way that she wants to be a doctor to help others… well, I have always tried to see if I could help in my own way. And the way we talked before about the unknown being what’s scary? Well, my writing here means it’s less mysterious. Knowledge helps. Even if the knowledge is not what you want to hear, knowing is better.
Denial won’t change the course of things, and often makes things worse.
Secrecy is bad. Sharing and supporting are what I champion. And I know that de-mystification is a constant effort. I will continue to teach my children daily. I said I hoped that somewhere in all of this she could see how important science and medicine are in my world. And that if she does decide to be a doctor that is a noble effort. She will make me proud in whatever she does. As will my boys.
The funny thing is how much better I felt after we talked. The conversation was the hardest one I’ve had. The topics are gut-wrenching. But shining the light on them, on this disease, on what happens next, is the only way I know to cope, to help, to keep going.
We talked on and on as I combed my fingers through her long hair. I stroked her smooth, soft cheek. She was giving me strength.
And what I realized about people saying I should just wait because she’s going to eventually act out:
Waiting is a luxury.
Waiting means having time.
And that’s what I want most in this world right now.
October 12th, 2014 §
I make sure my family goes on trips without me now.
It is important that they learn to be without me.
Important that they get time away from here.
Important that they know there can be fun and joy even if I am not with them.
This is what I want.
This is what will be.
It is not easy to be the family of someone who is ill.
I know this is true.
And so I send them away to laugh, to be together, to have fun.
This is what I unselfishly demand.
In April of 2013 we all went to Florida. I didn’t know it would be our last trip together for a while. I could not focus very well. I just knew that life was not the same and it never could be. I had learned about six months earlier that I had metastatic breast cancer. I knew I would never be carefree again. I had intended to stay away from writing for that time, but on this particular day, in this moment, all I could do was realize the agony that was my situation. When I got back to the hotel room I wrote the words that had been in my head.
…………………………………………………
“Floating Away”
I sit on the beach, feel the sand’s angry texture rub my chemo feet in a way I wish it wouldn’t.
I watch my family in the ocean, turquoise and calm and vast.
My husband flips over, face in the water, takes some strokes out to sea.
His movement is graceful, effortless, just as it was the when I met him 22 years ago.
He was a sprinter on the college swim team then,
and while he laughs and says it doesn’t feel effortless anymore,
nor perhaps fast,
it does not matter.
In my mind’s eye he is that young man,
swimming fast,
joking with his team,
coming over to the stands to talk to me while chewing on the strap of his racing goggles.
I fall in love with him again every time I see him swim.
My three children float, bobbing in the ocean water.
I can feel the distance between us, it feels like a lifetime.
It is my family in the ocean floating away from me.
I see the quartet, I watch as an outsider.
I do this a lot lately.
I watch them from afar and think how it will be without me.
A new family unit.
Behind the big black sunglasses my tears stream down.
Suddenly Tristan is running from the water to me, across the sand.
He stands, dripping, face beaming.
“I just wanted to tell you I love you, Mama.”
I take his picture.
I capture the sweetness.
I grab him, hug him, feeling the cold ocean water on him, melding it to my hot skin.
I murmur to him what a sweet boy he is, that he must never lose that.
I send him back to the ocean, away, so I can cry harder.
By the time they return to shore I’ll have myself composed.
But my oldest immediately senses something amiss.
She mouths to me, “Are you okay?” and pantomimes tears rolling down her cheeks.
Yes, I nod.
I walk to the water’s edge to prove it.
August 22nd, 2014 §
Grow up faster,
Need me less,
Reach the sky,
Stand up tall.
Make time go,
Speed it up,
Get it done,
Don’t look back.
Hear my voice,
Feel my embrace,
Know I tried,
Look straight ahead.
Keep forging,
Thinking,
Feeling.
There is no choice,
This world is all there is,
Make it last.
Ours will be far shorter a time than it should be:
Years compressed into months, days, hours, minutes.
It will never be long enough,
It simply could never be enough time with you.
July 9th, 2014 §
Now that all three of our children are at sleep away camp I get asked a lot “what I’m doing with all of my free time” and “what fun things I have planned.” Clearly what people think life is like for me are a bit skewed. I have nothing planned. I can’t travel and haven’t been able to take a trip for over a year. I’ve missed family celebrations, holidays, and get-togethers. I’ve eschewed visits from family and friends because I’m not well enough. What others consider “free time” is recovery from chemotherapy and struggling to do day-to-day functioning including the many medical appointments. Being able to make it out for a coffee date is a thrill and isn’t possible many days. Most of the rest of the time my “free time” is spent in bed fighting nausea or fatigue or pain or other side effects.
For the last few weeks my blood counts were sliding and I couldn’t do anything without huffing and puffing in a much more severe way than usual. I struggled to bend over to pick something off the floor without needing to sit down to catch my breath. My hemoglobin levels had been hovering around 8.2 for months and I pushed through but they dropped to 7.2 and by then it seemed I needed a boost to be functional. Ten days ago I received two units of red cells in a transfusion that because of some problems with the samples and testing and a five hour infusion ended up being a ten hour marathon day. It was so worth it. Red counts came up within days and I felt better starting about 24 hours after receiving the cells and that continued to increase within two to three days. My platelets were also very low at 24 but regenerated on their own (low platelets are a predictable result of this chemo regimen) and I was able to avoid a transfusion of those. This was, by the way, the first time I had ever had a blood transfusion in my life.
I had chemo yesterday: Carboplatin and Gemzar cycle #6 (that means I’ve had 6 infusions of Carboplatin and 11 of Gemzar so far). Starting now, but especially with cycle 7 and every time after that, there is a risk (reported at 27% for round 7, here is an article for anyone interested) of an anaphylactic reaction to the Carboplatin (and the other platinum-based chemotherapies like it). We are being conservative and premedicating with drugs that will hopefully help blunt or avoid this type of reaction altogether. There isn’t any reliable way to predict if it will happen to any individual patient. I did have a reaction to Taxol when I received it in the metastatic setting (after not having a reaction the first time I had 4 cycles of it seven years ago) but that is not a reliable indicator of a reaction to platinum-baed drugs.
It will be time for a scan soon I think, we are watching my tumor markers which have dropped consistently in the last few months which is fantastic but on yesterday’s test just stabilized without a drop. We’ll have to see if this is just stabilization (fine) or if this is the start of the chemo losing its effect. It is unsettling to think about losing another chemo combination that has been working, even though it’s a tough regimen to tolerate.
My voice has returned to almost normal unless I use it on the phone or talk a lot. With the kids gone I really am not talking much. I had an extra five days off chemo because my oncologist was on vacation and that allowed me to get things done I usually don’t have enough rebound time to do. The transfusion timing helped too.
I haven’t been outside much, the humidity and heat have been too oppressive for me, but I am hopeful it will break soon. I do try to make it to the beach once a week to get a change of scenery.
We will get to see the kids this weekend and I can’t wait to hug them and hear all of their stories before they go back. They love camp, always have. They look forward to it year-round and now that they all go it’s great they can share these stories and experiences (they are 15, 12, and 8. Last year the youngest begged to go for a week to try it out. We said yes, knowing his siblings would be there and he would have a blast. Five days in he called in tears, begging to stay. That repeated every week until after a month we said it was time to come home!).
Some may wonder why, at this time, I let them go instead of keeping them home with me. I do it because it’s not about me. It’s about them. It’s something they love. It’s an important routine, tradition (this is the sixth year for the oldest). In my eyes, it’s important that they have a change of scenery, freedom to be kids, get away from the ways my cancer and its chronic treatment limit what I can do, and therefore what they can do. It’s a gift I can give them and I also feel it reassures them that I am doing better than I was a few months ago. This is important.
I love having them away from electronics, away from wondering if asking me to take them somewhere or do something with them will be “too much” or “bothering me” which I know the older ones are always concerned with. I want them to be with friends old and new, having fun with young and energetic counselors, trying new things. There are so many (most/all) physical activities I cannot do with them that they can do there. So many new games to play, achievements, laughs, experiences. I never hesitated when they were ready to sign up last October for this summer. I knew that no matter what, they needed and deserved it. On the left is my favorite photo from camp so far: Tristan getting hooked in to try rock wall climbing for the first time. It makes me laugh every time I look at that facial expression!
That doesn’t mean it’s easy for us to be apart. We are very close. Especially the older kids worry about me I am sure. But I stay in touch by email, will see them on visiting days, and I send them weekly care packages.
But the truth is that separation is good. It’s a selfless act for me to teach them how to to be without me. One of the most important things, in my mind. Coddling them and making them stay home is not what I feel is best for them right now. It is part of our job as parents to teach our children how to be independent, how to solve problems on their own, how to go off in the world without us for whatever reason. I will always want more time with them. It will never be enough for me. But this is my old age. I must teach them as many lessons as I can, while I can, for as long as I can. And that is true for everyone, but of course I have not only the urgency to do it NOW but also I have no idea how long I have and will likely be debilitated in some form until that time comes.
Yes, it’s true no one knows how long they have to live. But those diagnosed with a terminal disease know what is most likely to kill them. And that their time is not just going to be shortened, but consumed daily with the treatment and effects of that disease. It’s not having a normal, healthy life that is relatively good and healthy until a sudden accident happens. It’s just not the same as the general worries of growing older or aches and pains. It’s never-ending. I don’t get to count down how many chemotherapy (or other treatment) sessions until I’m done this time. Being done will mean there is nothing left for me to try. Anyone who has had chemo or radiation or some other type of therapy knows how important it is to have an endpoint, a countdown. Knowing that will never happen (and in fact what you’re really hoping for is a lot of them, because that means you still have options) is one of the mental struggles each week, since it isn’t just spending one day a week getting chemo, it’s how it makes you feel each day after that.
My hair is growing slowly back on this current combo. I know many people mistakenly think this means I’m “better.” I do like that soon I won’t be covering my head and that means I can be more invisible in public. But I also know how many comments I get on the occasions I have done it that people think I am done with chemo or all better. Not all chemotherapies cause hair to come out. My hair will come and go numerous times by the time we are done with this. Its presence or absence only indicates something about which chemo I’m on, not its success or failure.
Someone on Twitter asked for my piece on what to say and how to be a friend to someone who has cancer/serious illness. Here is a link for anyone that missed it and is interested (it’s too long to include the text in this post).
Also, I am including two posts from last year at this time. One on the eve of the kids’ departure for camp and one written while they were away. Of course I was doing even better than I am now, my thoughts were similar, but not as urgent, strong, painful as they have been the last seven months.
I’ll post again with an update if there is anything to report on change in treatment, scan results, etc. For now we stay the course which is not easy, but is the best possible choice of the options I have right now. And that’s the best I can do.
I appreciate the support, as always!
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In these last remaining hours (Camp) original post here
In these last remaining hours
Before my children disappear
One,
Two,
Three…
In these last remaining hours before they go and spread their wings again,
Leave this nest,
I miss them already.
I put the dinner pots and pans away.
Wipe the crumbs from the table,
Load the dishwasher,
Play fetch with the dog.
I sit in the garden,
Listen to the wind in the trees,
The birds settling down before nightfall,
As we settle, too.
I tuck them in one last time,
Hear their doors click shut.
One,
Two,
Three.
Tomorrow night there will be no mess to clean,
No yelling upstairs that the TV has been left on again,
No trunks piled high with carefully labeled belongings in the dining room.
I will cry, I know.
Not because I am sad that they are going– no, that gives me great joy.
Children being children.
Forgetting stress at home and doing new and varied things.
I cheer their independence.
I will cry because I know they will always need me somehow and I just wish I could be there for them to outgrow
by choice,
by time,
by age.
I hear the mother bird in the tree calling out.
I don’t know to whom.
I will be like that tomorrow,
calling out,
with no child to hear.
……………………………………………………….
Like dollhouse rooms left abandoned (original post here)
Like dollhouse rooms left abandoned,
The rooms stay tidy:
Beds made tight,
Pillows square,
Hampers empty.
It’s been one week since the children left for camp.
Littlest Tristan was due back yesterday but a few days ago he said he was having so much fun he wanted to stay another week.
I realized this week that after being sick for the previous two that I needed this time to catch up, to rest, to regroup.
I miss them but am so glad they are having fun doing what they love.
I pack up care packages,
write letters,
wake in the middle of the night and mentally picture our children sleeping in cabin beds.
Our dog Lucy follows me, sleeps in my room now, not Paige’s.
She doesn’t want to be alone and stays within feet of me every moment.
I tell her it’s okay:
The kids will come back.
The rooms will get messy again.
There will be crumbs dropped at the dinner table and car rides galore.
Paige and Colin and Tristan will come back tired and dirty and happy.
They will come back.
They will.
That is the key.
I think of absence like a hole:
How different it is when it’s temporary and filled with happiness,
Rather than when that hole is a pit of grief. Of ache. Of loss.
The way it will someday be for them.
February 5th, 2013 §
Today’s brand new post is over at Huffington Post. You can click here to read it: The Hardest Conversation.
This piece is about the conversation I had with Paige after my diagnosis in October of Stage 4 breast cancer. As the oldest of my three children, she has many questions that the younger children don’t. I wrote the piece back in October but kept it to myself.
I waited until I felt she was ready to read it and give her approval before I published it. I would not publish a piece like this without her permission. She said, “You should publish that, Mama.” I think she knows it might help someone else. We both hope it will.
I’ll be back with an update in a day or two. I’m back on an increased dose of chemo this week and did try switching to the new bone=strengthening drug.
Thanks for all of your comments, emails, and support!
January 14th, 2013 §
Today’s post is not about cancer. This post, about grief, still affects me every time I read it. I am hoping that those of you new to the site are finding this month of re-posts to be a good introduction to my writing. Hopefully it’s allowing you to see some of the life experiences that have gotten me to where I am. It’s been very interesting for me to go back and re-examine so much of my writing through this new lens of metastatic cancer.
This post was written the day after my beloved mother-in-law’s sudden death in a car crash.
………………………………….
Written September 17, 2009
She went up to bed tonight,
Still pink-eyed and shaky.
Finally calmed enough to hopefully get some rest.
And as she walked into her room,
Somehow,
From beneath her bed,
The bright kaleidoscope patterned paper
Caught her eye.
I heard the sobs,
The wails,
The primal,
yearning,
cry.
“My birthday present.
From Grandma.
The one she gave me early.”
She stood pointing at it,
Gaze averted,
Like a child pointing at a dead
Animal in the middle of the road.
Together we looked.
And then all at once it hit me.
I knew what she was talking about.
Two weeks ago,
When my in-laws were visiting,
Paige’s grandmother had given her a wrapped box
And said,
“This is for your birthday.
Put it somewhere safe.
Don’t open it until October 28th.
I know it’s something you’ll like,
But you have to wait until then,
Okay?”
And so,
Because that’s the kind of 10-year old she is,
Paige didn’t peek,
Or lift the corner of the paper,
Or ask her brother what was in it.
Instead,
She carefully put it under her bed
To wait until October.
We had no way of knowing we’d never see Grandma again.
No way of knowing that was the last present that would be bought.
No way of knowing that a truck which had no business trying to pass anyone,
Much less several vehicles at once,
Would slam head-on into my in-laws’ car and kill our loved one.
Tonight,
The very sight of the box,
And the thought of its giver,
Brought her to tears,
Racked her with sobs,
Riddled her with grief,
Filled her with anger,
And sadness,
And loss,
And pain,
And confusion,
And did the very same
To me.
October 27th, 2012 §
Today is day 3 of the second round of chemo. My blood counts were good this week and I was able to go ahead with full-strength dosing of 2000 mg of Xeloda twice a day for 7 days. Side effects need to be monitored each round to see what dose I can take each time.
I’m tired after a very active week. Tomorrow (Sunday) is Paige’s 14th birthday. We have a giant Crumbs cupcake waiting for her birthday dinner tomorrow night. My friend Alex is bringing over a special meal of her favorite foods from The Rye Country Store so it will be ham and other assorted treats for everyone.
She likes when I tell her stories about her babyhood/childhood. I’ve decided to finally give her the scrapbook I kept for her during the first few years of her life (okay, fine, until Colin was born and I didn’t have time for that anymore!). It has photos, letters I wrote to her every few months about what she was doing and how we spent our days. I think she will love it. Tonight I will read each letter and page through the book.
We’re in Hurricane Sandy preparation mode. I’ve got two refrigerators stocked, generator propane tanks filled, case of oil for generator, porch furniture moved, flashlights galore, batteries, water, etc. I’ve done as much as I can to be ready and yet still I feel unprepared.
It’s all about control. Loss of control is a tough one. There’s been a lot of that around here lately. I try to give myself ten minutes a day where I cry and lash out at what is going on. I let it out, and then I move on. There’s no other way to be in my mind. To focus on the negative only ruins the days. I need to keep reminding myself of that.
I try to do as much as I can to be “normal”… to do the things I usually do like some laundry and grocery shopping and going to Tristan’s karate class. It helps the kids to feel that things are going okay and also keeps me distracted. My motto is “I’ll do as much as I can for as long as I can.” That is how it’s going to be.
I don’t know what the storm will bring to us and to so many of you in its path. I hope we will all be safe. My best to you all for minimal damage and disruption. As always, thank you for your kindness in all of its forms.
xoxo
October 24th, 2012 §
To my dearest children,
Someday you will understand the depth of my love for you. Perhaps it might take until you are adults, perhaps made more vivid if you are fortunate enough to have children of your own. No matter when, no matter how, I hope you will someday learn this powerful emotion I feel for you. You give me strength. You make me fight. You give me joy. You make my heart swell with pride.
I want to see it all. I want to see every day. I want to know every phase of your lives.
You see, I am a quitter.
I know, those of you who know me are probably chuckling and saying, “Yeah, right.”
It’s true.
There are very few things I’ve finished that I have started. I think I was always afraid of not doing something well. I would start and quit… or just not start at all.
But let that be a lesson: there is no such thing as perfect. Try. Fail. It’s okay. Take a chance. You have no idea where it might lead.
Hard work doesn’t always pay off. People don’t always get what they deserve. That’s just the way it goes.
I didn’t finish my Ph.D.
I never wrote a book.
But my darlings, let me tell you something I take pride in: you. Parenthood is a lifelong commitment. There is no backing out, changing your mind, saying “it’s too much.”
There is one job I’m good at and it’s being your mom (I’m a pretty good wife but I do tend to nag even though it’s for your dad’s own good). Your flaws and your talents make my heart soar in equal measure… they are what make you you. You are each so different, so unbelievably deliciously divine in your own way. Never doubt that my heart bursts every time I look at each of you. I’m pouring every ounce of love into you that I can. I’m going to just keep doing it every day.
Being your mom is the best thing there is.
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.
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.
October 28th, 2009 §
I remember it so well.
I hope I never forget.
Those feelings I had eleven years ago as I had my first contractions and went into labor with my first child, Paige.
My husband and I were living in New York City.
I was taking a long walk home after an appointment when I
first felt the tightening begin.
It was three o’clock in the afternoon of October 27th.
By dinnertime I was at the hospital.
By evening I was home again.
Too soon, they told me.
Could be hours,
could be a day or two.
By midnight I was back at the hospital again,
This time for good.
All night we waited.
All night I labored.
And at 8:06 a.m. she arrived.
My daughter.
I left the hospital two days later in typical New York fashion:
not with a car seat,
but instead with sweet P bundled in a carriage.
We walked home the 4 blocks to our one bedroom apartment.
Two days later we emerged to show her the NYC marathon.
As every parent does,
I fell in love.
As Clarke worked 80+ hour weeks,
She and I were buddies,
my city baby and I.
For hours we would explore the city.
Everywhere I went, so too did she.
When she was one year old I had medical problems;
an autoimmune disease which attacked my skin,
pigmenting it bright red,
thickening the soles of my feet
and palms of my hands
until I could hardly use them.
Hours were spent in the waiting rooms of doctors
before I was correctly diagnosed.
The treatments were time-consuming.
Paige came to every appointment with me.
It never occurred to me to get a babysitter.
She just came along.
As she grew I just knew she was something special.
She was always perceptive.
Verbal.
Bright.
At sixteen months she sang the alphabet.
By eighteen months we were having conversations.
Once we started we never stopped.
Paige “gets it.” She’s an old soul.
She is so mature it is sometimes hard to remember her real age.
I am so lucky.
I am so lucky she’s mine.
And I tell her so all the time.
I don’t know what she’s going to do when she grows up.
But I know what she’s going to be –
All the things she already is:
smart
sensitive
loving
confident
grounded
brave
funny
creative
talented
focused &
lovely.
Paige has seen a lot in her few years.
More than I would have liked for her.
I wish I could have spared her some of the
difficult things we’ve gone through.
My medical diagnoses, especially cancer, and Tristan’s issues too.
There’s the box under Paige’s bed (“the box” 9.17.2009) –
The one Barbara gave her in anticipation of her birthday.
She knows what it is now.
It won’t be a surprise.
I know what she really wants for her birthday: she wants to have Grandma back. Alive.
Me too.
When Paige was 5
I got a call from the ski school in Jackson Hole.
“Paige is done skiing for the day,” they said cryptically,
“You should come get her.”
They wouldn’t give me details.
She’d fallen.
But they wouldn’t tell me anything.
Clarke was on the mountain skiing.
He was able to reach her first.
It was one of those times I marveled at how we existed before cell phones.
I made it to the medical clinic at the base of the mountain.
I walked through the swinging double doors.
I’ll never forget seeing Clarke and a doctor staring at x-rays
up on a lighted board.
It happened in slow motion…
I mouthed “Broken?”
and Clarke nodded.
My five year old had just broken her leg.
It was the first time I’d ridden in an ambulance.
I didn’t know the next time it would be my turn.
It was the first time there was a fracture.
I didn’t know the next time it would be my turn.
It all seemed so dramatic at the time.
Maybe being far away from home made it worse.
I had no idea I’d look back on that episode and think it was
literally “child’s play.”
After we finally got to the hospital and talked to an orthopedic
surgeon it was time to set the leg.
They’d given Paige pain medication and something to make her drowsy while they put the cast on.
Clarke and I were a few feet from the foot of her bed
talking about the logistics of getting her home on the airplane.
As she slipped off into a hazy slumber I saw her arm go up
into the air.
She slowly raised it, then her hand.
And then she made the sign language symbol for “I love you”:
Thumb, pointer, and pinkie extended out, middle and ring fingers
tucked back.
It was our signal.
I’d taught it to her as a toddler.
I wanted a way to tell her I loved her if I couldn’t be heard.
Across a crowded room, in a place that was quiet, or when she was nervous at a school performance,
I’d make the gesture for “I love you” and
she would know I was right there for her.
And so,
as she drifted off,
my five year old
told me she loved me,
that everything was going to be okay,
that this was all just a bump in the road,
all without saying a word.
Sweet P,
there are so many things I hope I’ve given you:
skills, characteristics and traits to
help you find your way in this world.
I hope I will have many more years to watch you grow
and see what you will do in the years ahead.
You make me proud,
you make me smile,
you make me laugh,
you make me cry.
Now, forever and always,
I believe in you.
May you someday know the joy that I have known having you as my daughter
and the special bond we will always share.
The love that Nana and I have,
now next to you and I…
I hope that you will have that gift
someday with a daughter too.
Happy birthday.
“Why do you have to have surgery tomorrow?” seven year-old Tristan asks from the back seat after we drop off his 11 and 15 year old siblings this morning.
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