Wednesday, December 1, 2010

Good Friends

My friend Lindy and her three kids surprised us with a visit last week. They moved to LA a few years ago and we hardly ever see them, but we have one of those distance-proof friendships.  Brooke, her daughter, was born with PWS just three weeks after Oscar in the same hospital.  Most of those doctors had never seen a child with PWS before Oscar was born and actually delayed testing Brooke for it because the odds were so low that two kids would be born with this diagnosis at the same hospital in such a short period.

I remember the moment I got the call that another baby had been diagnosed. My heart sank and soared at the same time. I was devastated for the mom, but I also suddenly had company in my grief.

I spent many an afternoon curled up in the faded green chair in my living room talking to Lindy on the phone while the boys napped. We cried and shared feeding tips. We said things we couldn't say to anyone else.

Our kids presented differently with the syndrome...another reason we confused the NICU doctors I think. Brooke had better muscle tone and moved and rolled and batted at toys long before Oscar. Oscar had an easier time with eating and gained weight more easily (a good thing in the early months, but it still scared me).

Here they are in February 2001 -- Brooke was nearly two months old and Oscar just over three months old. Whenever I look at these pictures I remember how much I wanted Oscar to move. His shoulders were glued to the floor and it took every ounce of energy just to turn his head the slightest bit.  Brooke, on the other hand, had more muscle tone -- look how her position changes in each picture and how she's tucking her body in to Oscar's. Notice how her arms are up and her fingers slightly curled.  Oscar did move his head! 




I spent a lot of time comparing Oscar to other kids (with and without PWS) in those early years trying to figure out how he was going to fare.  I wondered obsessively if he was "mild" or "severe", terms I no longer use.  I finally realized, after many many months of pouring over articles, talking and emailing with other moms, and interviewing doctors and therapists, that PWS is a syndrome comprised of many symptoms, each with its own spectrum of possibility.  Just because a kid develops more quickly or slowly in one area really does not mean they will fare the same in another.  A kid with super low tone, for example, is not necessarily going to struggle more with skin-picking or food-foraging.  It is true, however, that a kid with better muscle tone can explore and learn from their environment, which can aid cognitive development.  (I lost a bit of sleep over that.)  It amazes me how this one set of pictures brings back all that angst.

Anyway, here are Brooke and Oscar at age four, re-enacting that baby scene. (Silly parents obviously put them up to this!)

And here they are now at age 10.

Still good friends!

14 comments:

  1. Wow. That is just fantastic. I'm so happy you have one another and that they have one another! I love this post -- how it touches so gently on the intense experience of receiving the diagnosis and those early years --

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  2. Sweet! What a rough road it has been for you, but how great for both you and Oscar to travel it with companions.

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  3. So nice to have such a beautiful friendship....for both you and Oscar! That is amazing 2 babies with PWS in the same hospital at almost the same time. It sounds like it was a friendship that was meant to be.

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  4. "My heart sank and soared at the same time. I was devastated for the mom, but I also suddenly had company in my grief."
    I know this feeling well. It's so important to have people to share with in tough situations.

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  5. great post! You were smart to reenact the pictures. It's very moving.

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  6. so nice that oscar has friends that are like him. Do u know of a boy named Nolan who lives in bulingame

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  7. Thanks all -- we really are so lucky to have met so many great families in our area.

    And I do know Nolan! Met him when he was an infant. A great little guy who seems to be as into music as Oscar!

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  8. What a wonderful gift that friendship is, for all of you! They are such gorgeous children.

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  9. I love this, Mary. What amazing, adorable kids. There is so much to be thankful for, isn't there?

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  10. I live near Nolan I have CP and a blog come visit

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  11. I live near Nolan I have CP and a blog come visit

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  12. Wonderful to see the changes.

    PS - I'm here from Blog Gems

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  13. I'm new to your blog, Mary, via Elizabeth's blog.

    I'm amazed at the transformation in these two children, Brooke and Oscar.

    I don't have children with these sorts of difficulties but I'm interested in your writing as a means of helping you to deal with your struggles. It's good to meet you.

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  14. I can't seem to find your email but I'm missing you and hope that everything is all right.

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