Sunday, March 20, 2011

Diagnosis Day: Shattered expectations

I always enjoyed the first class of the term. I would sit there — be it in a class of 15 or 200 — and look at the teacher with a clean slate. This teacher didn’t yet know me from any of the other students in the class. This teacher couldn’t yet tell that I would be one of his or her best students.

It’s arrogant to say that, I know, but that doesn’t make it untrue. I graduated from college with higher than a 4.0 GPA, receiving an “A” and often an "A+" in every single lettered class I took, from Physics of Energy to Economics to Russian to Photojournalism.

An “A” means “exceeds expectations.” That’s what I do. I exceed expectations in just about any project I set my mind to.

So when it came to the biggest project of my life — having children — I went at it with the same gusto I applied to other projects. I read books upon books, I researched, I analyzed it from all angles, I imposed diet and exercise regimens, I avoided potential toxins, I did everything right. Everything.

After the devastating news that our twins would likely be very premature, I began to apply myself to that scenario. I don’t think it would be too much of a stretch to say I devoted myself every day to keeping them from being premature. I quit work, I did everything books and doctors told me, I stayed hypervigilant to signs in my body that might indicate early labor. When I felt those signs, I went to the hospital and lived there (under awful conditions) for two weeks.

When I finally gave birth and everything was supposed to be fine but wasn’t fine, I then devoted the next eight months to learning about cerebral palsy and researching and implementing therapies, ranging from physical therapy to CranioSacral Therapy to homeopathy. My baby was given a vague prognosis of mild-to-moderate cerebral palsy and goddamnit, it was going to be mild. Because that’s what I do. If there is a range of outcomes, I work my ass off to get the best one.

So when diagnosis day came last Wednesday, and the doctor said “medium,” which I translated to “moderate,” I was devastated. It didn’t help that his attitude was that there was nothing to be done about it — either Malachi will end up having moderate CP or he won’t and the team of therapists will start working to help him adapt once he gets older and we know what we’re dealing with.

So, I said: “It just seems like you’re waiting for his brain to fail to make connections before you do anything about it.”

He sort of laughed and said: “What do you want to do about it?”

I should have looked directly into his grey eyes and said:

“Everything. I want you do to everything about it.

“I want you.

“To fucking.

“Fix it.”

You should know, by the way, that this man is supposedly the top cerebral palsy expert at a nationally renown children’s hospital. You should also know that he, like the developmental pediatrician we had before him, didn’t say anything that wasn’t a direct and limited response to a question from us. He didn’t even say it was cerebral palsy until we asked why we didn’t have a diagnosis yet. Even then he just said: “You have one.”

There was no sitting down and explaining the results of his evaluation, no tailored plan of action, no offers to call him if we had any more questions. At one point, in response to one of our fumbled questions, he said something like: “A lot of what I’m seeing here is extrapyramidal.”

I searched my recall for that term. “That… I think, if I remember from my reading, that means… involuntary movement?”

“That’s right,” he said, surprised, but didn’t elaborate.

When I got home and looked up the term, I found there were three different kinds of involuntary movement — he didn’t say which he saw — and that half of cases also have pyramidal or spastic CP and that this was a rare type of cerebral palsy, affecting about 10 percent of patients.

This threw me. We finally had an explanation for why Malachi didn’t display some of the more typical signs of CP (like tight, curled hands) and it wasn’t — as I had hoped — because he was doing better than other children. This meant all of the work and research we had done under the assumption that it was spastic CP would need to be reevaluated. A whole new chasm yawned before us.

After pressing from me to classify how many of Malachi’s limbs were affected — whether he was diplegic (usually affecting the legs) or hemiplegic (affecting one side of the body) — the doctor said he was “quad.” As in, quadriplegia. As in, affecting all four limbs. As in, my son is a quadriplegic.

I took a deep breath and said: “That’s what we thought, but when we look that up it seems so much more severe than what he has.”

“Well, you have to be careful there, because they’re talking about spastic quadriplegia and that’s a whole different kettle of fish.”

A whole different kettle of fish.

Was he taking this seriously at all?

I went home alone with my two babies, my head spinning. My mind was filled with images of “crazy” people — “retards” — who flailed their arms, slurred their speech and childishly demanded things. Oh God, is that going to be him? 

It didn’t help that last week my husband told me a statistic that 52 percent of children with CP are mentally retarded. Fifty-two percent. And that doesn’t count your run-of-the-mill learning disabilities.

For some reason, I never seriously considered this possibility. To me, the worst-case scenario was that he would be in a wheelchair, and I had come to accept that. But the idea that he wouldn’t be The Smartest Kid With CP Ever had never really occurred to me.

I think it was because when the doctors first discovered the brain damage, they were always quick to say that many people with CP become doctors and lawyers. In a sea of things they wouldn’t or couldn’t tell me, I had lashed my boat to their seeming confidence that Malachi would be OK mentally.

Now, my expectations were shattered once again. Malachi’s passivity in the face of toys evaluators swung above his head or Jaden’s sudden interest in the cat, which Malachi doesn’t share, were now certain signs that he wasn’t all there. (The CP expert said he would peg Malachi at about a two-month cognitive delay, though he said it was hard to tell if that was because of his motor control issues.)

Hot tears streaming down my face, I looked down at my baby, flailing awkwardly on the floor of the nursery next to his brother who was flailing slightly less awkwardly. They had no idea that I was sad. Their worlds hadn’t changed even the slightest bit since some dude had said the words "medium," "quad," and "extrapyramidal."

I looked at Malachi in his beautiful big blue eyes and he smiled. So I said, in my best impression of Happy Days' The Fonze: “A!”

Judging by his reaction, this was, bar none, hands down, the funniest thing he had ever heard.

I stuck my thumbs out and did it again: “A!” More throaty, high-pitched baby laughter. “A! A!” I said several more times to my captivated audience.

I was laughing and sobbing and laughing. They were just laughing. I dried my eyes with a cloth diaper and put them down for a nap. I cried a few more times over the next few days, but I know now that, come what may, there will be laughter. There may not be two walking babies, there may not be trips to the grocery store without rude stares and there may not be two college educations, but at least there will be laughter and that’s OK with me.

I suppose, after a year of practice at failing to exceed expectations, I’m getting better at it.

16 comments:

  1. wow Shasta, I'm floored... I cried too. Your writing is sooo amazing and powerful... I want to lend you this book I have...

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  2. Please do! You should stop by some time, I'd love to see you!

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  3. I can not believe your doctor used the term "a whole different kettle of fish" - seriously! Where do doctors come up with these terms? I remember before the boys were born and we found out they both suffered brain bleeds I was talking to a doctor about it and she said "the stars must not have been aligned that day". What a thing to say. Anyway I am so glad you were able to stop and share some laughs with your adorable little men. I find that is the very best thing to do when I am having a rough day - I play on the floor with them and tickle them a lot so I can hear their adorable giggles - best therapy in the world!

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  4. This was such a beautiful post. Your authenticy was touching...I love how "real" you are. A mother's love,devotion, & determination vs a doctor's attitude? I pick the mom hands down! :)
    I liked how you said no matter what there will always be laughter. That's a good lesson for anyone going through life...whatever that path is.
    Thank you for stopping by my blog from TRDC. It led me here & your post touched my heart.

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  5. You probably have already or will do it, but call next week and request a copy of his report! It will have so much more info it, that it will make you wonder if you were actually even at the appointment.

    I find so many statistics on whether mental retardation accompanies CP that I find it mind boggling. I just need to know the best that can happen, and the worst. Then you can plan for everything, and the chances of being the least bit surprised by the eventual outcome are so tiny as to be laughable.

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  6. This was was so well-written. I come from the same kind of school of thought that you do...the "I can do/fix anything" mindset...so this resonated with me. I'm a mother of twins as well, so we share that, too. :)

    You crafted this beautifully...it was touching to read the evolution of this experience, from in-utero to the doctors' unbelievable detachment to all of the emotions wrapped up with falling in love with your children. So, so well done.

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  7. Jenny: I know, right? They really need to give doctors lessons in what to say. Don't they deal with this every day?
    Kristi: You're so right, I would bet on the mom every time. Thanks for reminding me!
    Amy: Yes, we're going to talk to him again tomorrow, and I think my husband's getting the report today. Did I mention he works at that hospital??
    Sue: Thanks for stopping by and for recognizing that this was "crafted" and not just some mom's journal entry! :)

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  8. Christina Lent9:52 AM

    Shasta, your sons are so lucky to have you as their champion. They will have laughter and love and an amazing life with a lioness that will fight for them with every breath. Keep fighting.

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  9. Thanks, Christina!

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  10. Shasta, you are truly inspirational as a mother and a writer. I could never imagine having a CP child myself but your writing gives such a true, raw, emotional glimpse into what it is like to have special needs children. I cannot believe how that Doctor treated you, its just not right. I look up to you as the amazing woman you are and please please keep writing. Through the tears I will continue to read and share your wisdom with others :)

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  11. you're writing is amazing.... and in this case incredibly heart wrenching. I've seen what my sister and my niece go through, the changes and shifts in expectations that come with all the doctors visits and it so hard. Right now though, its just words... the doctor doesn't know, nobody knows what will happen with him and how he'll develop. Its just your job to try to give him as much room to grow and tools to help him as possible...

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  12. Hi Shasta,

    I am not sure how I found myself here on your blog, but I think perhaps it was a gift. My mom is a foster parent, and soon adoptive parent to my little brother Ben who is now 4 and was born with PVL and CP. The doctors don't know why he was affected, unlike most PVL and CP children, he was neither premature or tiny.

    What I wanted to share with you is that Mom was told that Ben would be a "blob" (yes a doctor said that!). She was told cognitively he would never exceed the abilities of an infant. He would never walk or talk. We didn't tell Ben, and he didn't listen ;) Our little buddle of joy doesn't walk - he RUNS, JUMPS and gets into all sorts of trouble! He removes the child proof door knob covers and escapes his room to come find mom in the morning.

    His speech is poor because he is hard of hearing, but he does talk and has no trouble making sure we know what he wants. Is he "normal" ... no. Is he the best thing that has ever happened to us? YES. His joy for life is infectious. He is almost always happy. He continues to astound us every day with the things that he does that we were told he would never do.

    Don't listen to the doctors, encourage Malachi every day to do HIS best, and what he can learn will astound you too. Will he be as "able" as Ben at 4? Who knows, but if Mom had just accepted what the doctors had said, Ben wouldn't have made it this far (ie. they didn't get him into Physio until he was 2, so she started doing her own physio at home). I wish you all the best and look forward to seeing all the milestones Jaden and Malachi achieve as they grow. They are beautiful boys and very lucky to have you as their mom.

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  13. Hi Shasta,

    Here is a link to a PVL yahoo group, that also has parents of children where one twin has PVL and the other did not. pvl@yahoogroups.com My mom has found it very helpful - watch for her on the list, she goes by Ladydii.

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  14. I am so with you. My original "worst case scenerio" was that my LO would be the kid that everyone makes fun of. My realistic "worst case scenerio" is that I don't even know if he'll ever walk, talk, or function enough to go to school. And he's just under a year old.

    He got called "slow" today by a random person at a coffeehouse. I suppose I should get used to it, people will probably call him names for the rest of his life. :(

    The "funny" thing is that he's "doing very well" for his condition. He's orally fed, can track and smile, doesn't cry constantly, etc. But even with all that, there's a very high chance he won't be the Smartest Kid With CP Ever....which honestly makes me so sad. I was on honor roll, highly involved with sports and school activities, etc, and I was hoping that my son would follow in my footsteps.

    Anyway, my point is...I so can sympathize, since I feel like we are relatively similar, thought-process wise.

    Oh, and as an extra aside...my LO's name is Noah, he is 11 months old, he has HIE III and 'water on the brain' (no shunt though!), and will almost positively be labelled as CP within the next 6 months. No one has told us that, but as you know with doctors....they don't tell you anything. In fact, one of the pediatricians that we deal with (not his regular ones....that's right, plural) told us that he didn't think that Noah would be labeled with CP....to which I just smiled and nodded because I knew he was fully of crap. :)

    - Olivia Greenham

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  15. Hey Shasta
    I can so relate to your story. When Isaac was born, our Neo-Natal Consultant was very pesimistic about his prognosis. He was undiagnosed breach and had Hypoxic Ischemic Encephalopathy Grade 3, and has been diagnosed with CP. I'm pleased to say that he has surpassed all expectations! I've just starting blogging, so if you want to follow our journey, pop on over.
    Tui

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  16. Shasta,
    I am also a local to Portland with a child with CP (HIE mod-severe, feeding tube, etc, etc). I am diligently looking into NDT certification and going through the expensive process to become NDT trained as I am a SLP as well. I'd love to talk in further detail with you about fundraising and also your experiences with the Anat Baniel methods. If you are interested that would be a blessing.
    Best,
    Courtney

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