Saturday, July 02, 2011

And I'm falling

© Jessie Kirk Photography 


I thought I was doing so well. I wrote posts about why my son's cerebral palsy is awesome. I celebrated his milestones. I even very nearly forgot to compare him to his twin brother.

Then a week like this one happens, and I realize — once again — that I still haven't really accepted Malachi's disability. I just was operating under the baseless assumption that it will be mild enough to not significantly impact his life.

This week started with their first birthday. A day that, by all rights, should have come much later in the year.

Then on Tuesday, we starved Malachi until we could feed him barium in a scary room with a video x-ray machine. This test told us that his food has to be the consistency of honey before he can swallow it without it leaking into his airway. The feeding specialist tells us this is a condition that will get worse over time, not better, because his neck will elongate and make it harder for him to coordinate those muscles.

It's impossible for me to imagine a 5-year-old being unable to drink juice. Correction: It's impossible for me to imagine a walking, talking, relatively independent 5-year-old who is unable to drink juice.

The next morning, desperate for good news, I did a really stupid thing. I asked our physical therapist whether he thought we could rule out wheelchairs yet. He was very diplomatic, but the short answer was no.

I had thought that Malachi was doing well, all things considered. The therapists always seem surprised at the progress he's making. He is manipulating objects with his hands much better, he is just beginning to prop sit and stand at tables for a few seconds by himself. He curls his body on occasion instead of extending. He is getting his legs higher and higher in the air. All of these things can only improve with time and by next year, certainly he will have mastered them, right?

What the therapist alluded to, in his very kind manner, was that Malachi might not have the stamina to walk for very long. I had been so focused on the mechanics of walking that I hadn't considered at all the idea that it might be simply too much work for him to fight his body all the time.

My rose-colored glasses came off. I saw a boy who often sits like a lump on a log while his brother almost constantly wiggles, squirms, kicks and shouts. I saw a boy who prefers to lay — limp and slack-jawed — in the arms of an adult instead of playing with toys. I saw a boy who continues to simply scream during tummy time even though I know he knows how to roll over.

But I could still hear the stories from other mothers ringing in my ears:
"Our therapist thought he would never walk because his muscles were so tight,"
"Our son is 1 1/2 and doing so well we've cut back on therapy,"
and my own personal favorite: "Now he can run almost as fast as his brother."

Run. Almost as fast. As his brother.

With those assurances to myself, we drove to yet another neurodevelopmental center to get an evaluation for a new therapy. There, the PT room had a couple other groupings of babies, therapists and parents. I actually liked not having a private room like we always do. It was great to see other babies also getting treatment as it made me feel less like I was the only person in the world having to go through this.

But after a while I realized that those babies were what mild CP looked like and that was not what Malachi looked like. This baby leaned a little to the left when he sat by himself on the floor, but he was sitting by himself on the floor. And that baby couldn't quite turn a corner while creeping along a table, but he was creeping along a table. Meanwhile, Malachi drooped in his therapist's arms like a spent wind-up doll.

I drove home depressed and wondering how I had found my way back to shattered expectations. I was doing so well, I thought. I had accepted this, hadn't I?

No. I hadn't. I had only fooled myself into thinking his CP would be quirky, not life-threatening, like the x-ray showed, or significantly impairing, as having a wheelchair would be. Thinking it's not going to be that bad isn't the same thing as moving on from accepting that it's going to be that bad.

Just as if the universe wanted to drive home that point with a battering ram, the next day I unexpectedly found myself in the house of a woman with identical twin boys about the same developmental age as mine. After months of carefully avoiding such encounters, I was faced with watching two adorable boys sitting and rolling and crawling all over each other, just like mine were supposed to have been.

I feel like I keep getting kicked down stairs. I reach a landing, cry about how far I've fallen and how much my bruises hurt, but then I get up again, look around and bravely say: "Well, it's not that dark here, and look! There's so many more stairs down there! At least I didn't fall that far." And just as I bend over to stencil in Home Sweet Home on my lovely not-so-dark stair, someone kicks me again.

And I'm falling.

I think what I'm supposed to do is ignore my need to own that stair, to stencil in Home Sweet Home. But then what? Do I just sit there on my cold, dark, gray stair, alone and empty? Or perhaps I'm supposed to find my way off that staircase, out into the nothingness beyond?

Well, I don't know how to get off and I don't know what's out there if I do. I can't help but feeling there are just more staircases.

But what I can say is that I spend a lot less time crying at each landing before I pick myself up and look around.

That's got to count for something.

29 comments:

  1. I think that is how you measure it - how much faster you get up after each fall. Or, you just let yourself plummet to the bottom right now, so then you have nowhere to go but up - even if it's only a few stairs, as opposed to the whole staircase. And if you end up staying down there well, at least you avoid the anticipation of finding out what's at the bottom, so the scary unknown isn't as scary.

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  2. Hi Shasta,

    I really do not know what to say as I have never been in your shoes before. I do know that I love your honesty and your writing. I also know that some days seem worse than others and on those days it is so hard to see sun among all the clouds. I cannot compare my child to a sibling or a twin, but I tell you that I continually make the mistake of comparing Ellie to other children with Ds. I need to stop, I know it, but it is SO hard not too and I imagine it must be even more difficult for you since Malachi has a sibling the exact same age. I am praying that things will start to look up for you soon. As Amy said, it is how you measure--how much faster you get up after each fall. Take it one stair at a time.

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  3. I get it, I do. I also avoid identical twin girls - because mine are nothing at all like them. I can't help but look, but it's like poking a bruise. It hurts. I can tell you that 2.5 years into our journey, I don't feel kicked down the stairs much at all anymore, I feel like I'm on a different staircase entirely than other people, and MY STAIRCASE is awesome. It just takes some getting used to. (also, not sure I believe that the feeding issues will get worse, they can do a ton with feeding therapy and strengthening those muscles. For instance, I DO believe Cici will eat one day, and lord knows she can't now!)

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  4. Also, I learned VERY early on not o ask questions I don't want the answer to. Or already know.

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  5. First - Therapists and doctors don't know, or if they do, they don't always say so. Don't expect answers from them and don't accept what they say as the truth - the good OR the bad.

    I got kicked down those stairs so many times during the first few years of Sarah Kate's life that I began to wonder if I could survive. Eventually, though, all of the other kids will stop hitting milestones so quickly and mostly just get bigger. When that day comes, it'll be a lot less painful because you'll settle into an expectation of what is normal for your family.

    I realized how far I'd come when Nathan was born and we found out he had Down syndrome. Every other birth story I've read expressed an emotion of devastation and despair - I never experienced that, because I'd been through shattered expectations before.

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  6. Hi! I just found your blog from Love that Max...and I'm so glad I came over to check you out...because I like you WAY better now after reading this post than the one you posted for Ellen's blog. I hope that doesn't offend you, but while reading your post for Ellen, I just kept thinking that "maybe you really didn't get it - as in CP"...because there is no way that it is possible to really feel that way so soon. You see...I have twin boys too...born at 30 weeks (Ben and Daniel) and Ben has CP and Daniel doesn't. My boys are now almost four and even though I'm in a much better place, I can't imagine I will ever think that CP is awesome.

    After reading this post, I now get why you could post that post for Ellen...you did what I did...kept thinking it was going to be "mild" and Ben would walk by the time he was 3, etc....but here we are at almost 4 and still nowhere near walking. In fact, we've finally ordered that wheelchair.

    ANyways...I don't want to leave too long of a comment. It's great to meet you and I'm going to snoop around your blog some more when I get a chance. If you're interested, I blog at

    http://aboutthesmallstuff.blogspot.com

    And like you, I seem to swing between acceptance and falling down the stairs on a somewhat regular basis.

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  7. Only parents in your near situation belong here, and yet here I am.

    Predicting the future is near impossible - as it is to not set expectations, dream or hope.

    Interacting in the blogosphere with the other parents I see here is a helpful thing, I think.

    Barbara

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  8. Thank you so much everybody for your heartfelt and meaningful comments. It really means a lot to me to know that I'm not alone.

    Amy: I guess I thought I was at the bottom, but my tricksy little brain finds ways to hope of climbing up again.

    Anna: The comparing is really hard. I guess the silver lining Jaden is getting so advanced over Malachi that it's getting easier.

    Fischer: I hope to one day feel like my staircase is awesome. I honestly don't know how you do it. As for asking questions I don't want to know the answer to, I really, really thought that wheelchairs were not on the menu anymore. Silly me.

    Andi: Thanks for the reminder about doctors. Believe me, I take nothing they say at face value.

    Cary: LOL! You caught me. I wrote that post for my blog, but I decided to ask Ellen if she wanted it because it seems like blogs like hers are so popular because they are so positive. I worried that when people came over here, they'd be like: "What gives? This is totally depressing!" So, glad you like it. And I looove connecting with other MoMs of CP kids!

    Barbara: Thanks, you're welcome here anytime.

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  9. First of all, we don't know if Malachi will need a wheelchair and second IF he does need one it's not the end of the world I should know I make a contribution to the world with one :)

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  10. Shasta - I like blogs that are REAL...whatever form that takes. For me, sometimes I write about acceptance and hope and other times I write about how much I hate CP. But that's real life...my emotions are all over the map. The best way to describe our life and experience is: My kids and life are awesome...but CP totally susck the big one!

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  11. Shasta, you are not alone in your falling, getting up and falling again. I identify so much with you. I have a son with autism who also just developed kidney disease on both kidneys.

    We must continue to push and press on, no matter what and although, we may have moments or days where we fall, we get up and move forward to the best of our abilities, for us and because we love them so much and know that they are gifts from GOD.

    Thank you for sharing your thoughts and emotions I know it is not an easy thing to do sometimes.

    Madison

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  12. My son will be 2 in 15 days. His CP is severe. His wheel chair was recently ordered. I don't think I will ever get used to my son having cerebral palsy. He stopped eating by mouth when he was a year and 4 months old. It was so hard. He will swallow tiny bits of baby food, but for the most part does not want to swallow at all. It is hard, but these special babies are our children and it takes strong moms to give them the best life possible. Hugs to you!

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  13. Hi Madison: It's nice to meet you. Thanks for your solidarity. One thing that really bums me out is how going through this really hard stuff (CP, autism) doesn't make us immune to other life challenges (peanut allergies, kidney disease). It feel like we should get a free pass on other stuff, doesn't it???

    Jennifer: Thanks for telling your story. It makes me feel all the more that I need to let go of the stair I'm on. I've tried to attach my hopes to things like that CP isn't degenerative, but it might as well be from stories like yours that I've heard.

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  14. It really is one big rollercoaster. Like Andi and Jenny say, it does get better as the kids get older. It does. You are in the thick of it. If you would have told me when Max wa 1 that at 8 he wouldn't be speaking or toilet trained, I would have gone into a deep depression. Now he's Max. He has surprised us in other ways. He continues to make progress. I am still sad some days, as you know. But the deep despair of the early years is gone.

    It is good you have a blog and the community, I didn't have that back then. There is much solace, comfort and info to be found.

    Please please please try to remember that doctors DO NOT know everything. Max didn't sit till 16 months or so. One doctor back then told me his future looked "ominous."
    Does that kid seem to have an ominous existence?

    Malachi is so very young. He has POTENTIAL. He is on his own timeline. He will surprise you.

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  15. Hi Shasta, I was recommended your blog by Cary@abouththesmallstuff, as I too, have identical boys - Asher and Nolan, and Asher has CP (they were 26 weekers). They are now 20 months/17 corrected and we had diagnosis at 13 months corrected, even though we knew from birth it was likely due to a grade IV bleed. Asher too has never fit into any of the molds of "typical" CP behaviour, and they have assessed him as moderate as well. Now we wait for an MRI to determine that there is (likely) deeper damage than the bleed to account for his patterns.
    I fall and then I get back up, regularly. I cry A LOT and at the same time I stare at him in amazement at how perfect he is. I think it's all "normal"? It's REAL anyway and I appreciate that about your writing as well. I will definitely be following along your journey on this blog! I too, blog about my boys at trousdellfive.blogspot.com.

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  16. Nisha: I know, I know. But you hate(d) yours too, right?

    Ellen: It is WONDERFUL that I have this blogging community, you included. My attitude and ability to recover has changed so much since finding you all. Part of me feels like all of the unknowns are what's so awful though. If someone told me Malachi wouldn't be speaking or toilet trained at 8 but would be walking and otherwise kicking butt, I would be super depressed for a while. But then I think by the time he was aware enough, I would be OK with it because I would know what to expect. The waiting and complete uncertainty is nerve-wracking.

    Hi Cary! Welcome! I love hearing from other MoMs dealing with CP. I will check out your blog!

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  17. Oops, your name is Tracey. Hi Tracey!

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  18. Thank you, Shasta.

    Sometimes I can give a connection - have you met Redneck Mommy?

    http://www.theredneckmommy.com/2011/07/04/please-live/

    Barbara

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  19. I've felt a similar feeling...although, my son does not have CP. I have spoken with a lot of other people who are also on this micro preemie journey and it seems to me like as the babies get older that the distance you fall isn't quite as far...until you reach the point that you aren't falling any longer. Maybe it's a time thing...something cheesy like "All wounds heal with time" - even the big ones, like learning that you have a kid with CP, or a kid who was born months and months before they should have, or a kid who is severely developmentally delayed. I wish I had more comforting words to tell you...but maybe it's comforting for you to know that there are others out there who also feel like their falling. :) We'll fall together.

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  20. Shasta, I read this post and cried. That is exactly how I feel and have felt so many times. We also had the dreaded swallow study and heard the same thing as you. I remember leaving and telling my husband that everytime we leave a doctor appointment I cry. (or I fall down more stairs) I just want to stop going! We struggle with eating every day. I think it is one of the most frusttrating part of CP. Why can't my son just swallow food? Is that so much to ask? Yesterday, after 2 horrible feedings, I found myself actually saying a prayer that he would swallow some of his dinner. I was at the point. You and I are so alike, because we kept thinking that Parker's CP would be mild also. I clung to the first diagnosis of Mild to Moderate CP (more the mild side). I am seeing that that is not the case anymore. But I have faith that Parker and Malachi will reach those goals. Keep it up! And thank you for sharing. Your writing is amazing!

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  21. Shasta, I have no words to express how much empathy I am feeling for you. I cannot imagine the highs and lows you are enduring and I am sorry for it. I can say that your perspective helps Moms in all walks of life and different situations and has me considering eventually getting back in to early intervention- and that every thing you are doing for that little guy right now will pay off dividends in the future!

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  22. Sarah: Thanks so much for visiting my blog and offering your support! The Internet is amazing in how it brings people together.

    Hi Marcy, thank you! I hate going to the conventional doctors too. The last one we went to said it perfectly. She kept saying "her job" was to let us know all the risks, i.e. scare the shit out of us. I wanted to say, "no, lady, your JOB is to fucking help us."

    C: Thank you so much for your kind words. Early Intervention is pretty rewarding from what I've heard because at that age most kids make faster progress than they will later on. Sort of a depressing thought on my end, but for the therapists I think it's nice! :)

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  23. Hi Shasta! I cried while I read this post. I can relate to it so much. I too feel like some days I am doing so well and that everything is going to be just fine. And then M has a bad day and I fall back down the stairs - not just a couple steps but to the very bottom. I do fight back though, every single time I fall I fight back. I remember when M was still unable to sit unassisted and his brother could do it with no problem whatsoever I was devastated. I remember thinking that he was never going to sit on his own. And he did - at 17 months old.
    Then they told me he would not be able to walk without braces or a walker and now at the age of 2yrs 4 months we know he will be able to walk unassisted - in fact, he stood unassisted the other day for over 5 minutes and took one step!
    M still does not speak any words but I will not ever think he won't talk because he always surprises us. I know it is so friggen hard some days but try not to listen to the doctors. They can only tell you what they see (and they always give you the worst case scenario to covers their asses). You know Malachi better than anyone and he will be a fighter and he will surprise you!

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  24. N and Z Mom12:36 PM

    My boys were born about a month and a half before your's, also at 30 weeks (they are fraternal though not identical). N has CP, Z does not. It is so incredibly hard some days. I watch Z who is crawling all over the house and pulling to stand, and then I look at N who is working so hard to try and sit on his own (prop sitting). I go into the kitchen to make dinner and Z follows me, while N is stuck in the playroom. It hurts.

    But then I think about a few months ago when N couldn't prop sit for more than 30 seconds and now we are building his endurance b/c his PT thinks he has the ability to sit just not the strength yet. Of course I can think these things on a good day. On a bad day I just want to go back to bed and let someone else deal with the therapies, exercises, AFO's, and everything else. Those are the days I make sure to read Ellen's blog, always upbeat and makes me think of the possiblities for the future.

    Anyway, sorry this is so long. So glad to have found your blog as we seem to be going through the same things at about the same time. Its nice to have someone "in my shoes" so to speak.

    Cindy

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  25. Jenny: It's so hard to figure out what our attitude should be. Should we remember how far we've come and hope for the best? Or should we let go of our dreams and expect the worst so we don't have to fall down the stairs again? Thus the name of this blog. Is it better to fight against outrageous fortunes or to bravely suffer through them?

    N and Z mom: Welcome welcome! Thank you for telling me your story. That is amazing that we seem to be going through many of the same things at the same time. Congratulations on getting N to prop sit! Malachi has real problems with balance, but I can say he really is getting better and better.
    Ellen's blog is great. Based on what she and others have said, it looks like age 8 is about when you feel more acceptance towards the condition. Sounds like a long way off to me....

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  26. I just came across your blog and read this. I am the mother of fraternal twins. My son had a grade iv ivh at birth and is delayed in everything. My daughter is right on track. I feel the exact same way. Mine are 20 months and are both amazing children. But sometimes I feel like one thing one doctor or therapist or friend says can send me spiraling down. And like you and probably every other mother like us, we just have to pick ourselves up and move on because we have to. But thank you for writing this because it is good to know that there is someone out there that understands this.

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  27. Tanya Johnson11:49 PM

    I relate so strongly. I will be "favoriting" your blog. My son was born at 28 weeks and suffered from a level IV brain bleed on the left side. He has cerebral palsy. He just started rolling over at 15 months old. I've shed many tears as I've watched him struggle to use his right hand so that he can hold something like a book (just to bang it :-) It's hard to know that in this life our children have SO MANY struggles. As a parent, I just want to take all their pain away and make it all better. What a glorious day it will be in Paradise when our children will be able to dance and sing and their bodies will no longer be a burden. "What a day, glorious day that will be." It's the only thing I look forward to with absolute uncertainty. God bless you and your beautiful twins :-)

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  28. This is so beautiful and honest and so what I needed to read tonight. I am right there with you on the staircase.

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  29. My daughter has CP. And it all depends, I stopped feeling sad 2 weeks after I found out. She has a rare mild sort- spastic monoplegia which only affects 1 arm or leg.

    Its not as hard for me as Abby can sit, talk, draw etc. Emm Tanya my child does not have many difficulties nor am I scared about her future.

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