Friday, June 21, 2013

Somebody Let Me Off This Roller Coaster!

They say that when a mother gives birth, her brain is flooded with oxytocin — the "love" hormone. This hormone lowers essentially the "pain" threshold of incorporating another being into your life by making it easier for your brain to change.

Since we got the diagnosis mere days after I gave birth, I worry that my brain has therefore been somewhat permanently altered to be manic about Malachi's disability.

Already today I have had enormous mood swings about whether or not I think Malachi might walk someday and whether what I'm doing is helping him get there. As I lay down to sleep... well, of course I can't sleep, can I? The weight of a hundred schools of thought and excruciatingly little scientific evidence of what works with kids with cerebral palsy is bearing down on my shoulders. I work myself into a frenzy debating the various options for what I think is quite literally the millionth time.

This afternoon I used Mom Power to locate a very small manual wheelchair for Malachi to try. Our hospital PT had been trying unsuccessfully for six weeks to get one but I finally just asked my local Facebook group of moms and got two offers within hours.

So, I sit Malachi in it and... what did I expect? He cried and was scared of falling out of it until the other mom helpfully offered her belt to help secure him in. Once he felt safe, I had to resort to some tricks to get him to even touch the wheels. Then I relaxed a little and started a game: "Touch the wheel; touch the iPhone." Then: "Push the wheel in any direction; touch the iPhone." And finally: "Push the wheelchair towards me; touch the iPhone." This took about 15 minutes and then he asked to get out, so I let him. Point being... he can probably use it. But he sure isn't going anywhere fast anytime soon.

Meanwhile, the other mom keeps telling me about what a long road it was for her now-8-year-old daughter to get to the point she is at today — walking with a walker, etc. — and essentially telling me that I shouldn't give up hope.

I believe her. And even though progress is screamingly slow with Malachi, I do see many of the elements he needs to walk already here now. As I drove away, the sun shone on puffy white clouds and I wondered how I could ever doubt that things will turn out OK. Of course Malachi can learn — he's awesome at learning and learning never stops! And hey, even if Malachi does use a power wheelchair his whole life, what's the big deal? He's smart, funny and personable. So, who cares?

I do, goddamn it, says a little voice that growls louder with each passing hour. I'm the one who's going to have to schlep him up stairs and transfer him into beds, etc., etc. And for goodness' sake what am I doing all this unconventional therapy for if he's going to be at the bottom of the charts anyway?

As I lay awake, I think, and not for the first time, that I've totally messed up, turned our lives upside-down for nothing. I agonize that I really need to do more therapy with him and that I don't put him in his various contraptions enough. I worry that the environments I put him in could be more conducive to moving and that I haven't even tried whatever idea it was I had two weeks ago.

I worry that if I get him a power wheelchair that I'm "caving" or "giving up" on him ever walking, because why would he want to try crawling if he already had something that propelled him around? (Indeed, he already does that with me.) But I worry that if I force him to be in a manual chair that it will just become another piece of unused equipment that he hates being made to try and I will lose out on all the developmental and social benefits an effortless propulsion system would offer him.

Then I worry that I care too much. And then I worry that I don't care enough. I wonder how I could have possibly thought a few hours ago that things were OK.

And through all of this I tell myself: STOP! It's not up to you! There isn't a magic bullet and you're doing the best you possibly can!

But before I know it, those compulsive voices start up again and I hear the tack-tack-tack of the roller coaster as it climbs to the sky.


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Need a baby shower gift? Dark & Light: A Love Story in Black and White is a beautiful and insightful board book available here. All profits go towards my son's medical needs. 

12 comments:

  1. There IS no magic bullet.

    You ARE doing the best you can.

    Your friend is right - DON'T GIVE UP HOPE. Ashlea was never expected to walk with a walker - now she uses it all day at school and can even take some independent steps. Don't give up.

    And don't beat yourself up either.

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    1. Thank you Alison! It is good to hear. I have yet to meet someone who is unable to sit at Malachi's age and has learned to walk though. It's a crapshoot.
      I really appreciate it though and GO ASHLEA!!

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  2. Fantastic writing, Shasta.

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    1. I didn't know it, but that was exactly what I wanted to hear. ;) Thanks, Mary.

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  3. Take a deep breath, first :-) You are doing the best you can, with all your heart. And that matters A LOT!!! From your posts, it sounds like you are an amazing mom, so don't be so hard on yourself. Is it easy? No, and I totally get you. I also have my "panic" moments where I think I completely messed up Nathan's life(in my case "messing up" means moving out of the UK into Norway, which has a beyond rubbish health system - do never believe those UN reports!!!) and obssessing that he is not getting enough therapy as well. But then I think: Have I completely destroyed my son's development because of 10 months out of the UK? If I think rationally about it, I am sure I haven't. His brain was still learning daily, he was making progress and therapy does not consist only of going to a place where there is an OT, ST and PT. It is also the daily things in his life, the books he reads, the little exercises he does whe he is in the bathtub, the strict TV control (which enables him to focus on other things), the obstacles we put in his room to enable him to crawl and cruise better, the ball exercises to strenghten his trunk. All is learning, all is therapy and all is helping him.

    In our case, we do not even have a diagnosis for his delays. He is not a severe case, but is not developing normally either, so we are in a "therapeutical limbo". Tired of disappointing follow-ups, stupid visits to incompetent therapists (that only stated the bloody obvious), I decided to be his advocate and "self-learned" therapist and look into alternative solutions. Like you, we are going for Anat Baniel (and I am looking into Conductive Education as well to complement). I would advise you to stick to ABM (or do it in parallel to traditional therapy) cause it seems to be the only thing out there that makes sense, is cutting edge and relates to brain plasticity.
    What therapies is Malachi getting at the moment? Have you talked to his therapists (traditional and ABM) to get their thoughts about the best program for him? Working together instead of "in conflict" with each other is better(and gives you peace). I forced my therapists to talk. Norway talking to UK, agreeing on what to do next, agreeing on a program of exercises for my son. Now I am adding a third country/approach in the mix :-) (we are getting ABM in Denmark) and I will be pushing for the communication to continue.

    It drives me crazy that we have to consider therapies in different silos, like they cannot work holistically with each other sometimes. It only messes up our minds and makes us feel guilty by forcing us to "choose". It should not be a choice, it should be an integration.
    Hope you are feeling better by now. And don't give up.

    All the best,

    Fernanda

    PS: I still need to send you that paypal order for the book. It's been crazy here lately, but I will try to do it this weekend :-)

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    1. Hi Fernanda,

      Thank you so much! Your loving and caring is so evident in your words. The U.S. has the best system money can pay for and it's total rubbish too for kids with developmental delays, so I doubt the UK is all that much better.

      Yes, I talk to all of his therapists about what is best and they all have different ideas — thus my conundrum.

      I leaning towards the power chair though. Now I need to figure out how that all works and how to get insurance to pay for it. :P

      And yes, I am feeling better. As soon as I blog about something it just sort of disappears. And all the great people like you cheering me on certainly helps!

      Please do send the order! ;)

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  4. Oh I can so relate. I will tell you that I have a video of the very first time my daughter tried a walker (her PT brought one that was too big and just not quite right, but we were giving it a shot). It's a 10 second video - she sort of wobbles and then falls out of it. Now it's about four years later and she zooms around in her walker like it's nothing. But that first day, those first 10 seconds, I thought "This is just not going to work." It eventually did.

    And I also remember feeling early on that if I pursued an AAC device for my daughter that I was somehow giving up on her ever talking. I learned that it's not true in various ways, but it was hard to open myself up to it. It turned out to be amazing...but it wasn't an easy decision at all.

    This blog post from another mama of a child with CP (about the "wheelchair decision"- as she calls it) may be helpful to you: http://aboutthesmallstuff.blogspot.com/2011/03/wheelchair-decision.html

    Basically, I hear you, and you are not alone in thinking these things. <3

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    1. Hi Marla,

      It's so good to hear from people who can relate! And yes, I know Cary's blog — she's the mother of ID boys too!

      I know that power chairs are great, but it just feels so huge to think about how we would incorporate it into our lives. And yeah, I guess I feel like if he has it, he'll just sit in it and never leave.... :(

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  5. You couldn't have said it better, Shasta. I always find myself halfway through on the road to acceptance and right away I "happen to find" some breakthrough therapy that "promises" to make her better. Then, I decide that I will try everything possible until there is nothing else left. This is probably not healthy for us, but why should we give up? What exactly are we giving up on? Is it their dream that they become what is called normal? Or is it our dream that make us want to make them walk, talk, and just blend in with all the other kids. I have read so much about adults who have cp and how they hate anyone trying to make them look "normal". I think about that all the time and how much I want my daughter to know that she is perfect. I would never want her to feel that I am trying to fix her. In the end I contradict myself. The truth is, I believe that walking will make her happier and I want her to be as happy as she can be.

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    1. I know, right? It's such a rough position to be in.

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  6. Hang in there!! Your fight will never end; however, you may learn to use your knowledge is a lot of other ways, which in turn will give you and your son some peace of mind. A large part of your rewards will consist of your son's smiles and milestones and the smiles he puts on others faces! God has chosen you to be a special parent for a reason! My daughter was diagnosed at two years of age with Cerebral Palsy. She is now 33 years old...she’s still smiling, still helping others smiling, and is now teaching them a thing or two. She doesn't walk, but she could be so much worse. Years of therapies, and your exhausting efforts, will help your son for all his years to come. You have the peace of knowing you’re doing your best, and when you feel your best isn’t enough, or that it’s too tiring, we are hear to listen to you vent! I would have loved the internet age to help me :) Keep up the awesome work Shasta...you're doing a great job as Malachi’s mommy!!

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  7. You know I have BIG feelings about mobility and wheelchairs but only because we've been on this same rollercoaster and came out with a weepy victory dance and a power chair that has changed out lives. It doesn't make me all pro-power chair it makes me all pro-the very best fit for your child because there really are other factors to consider with a chair. It's changed our lives for the better in so many ways, but yes, it was a big decision and I took plenty of time making it. And I still consider Aidan to be a walking kid (you know, cuz as mom I can spin that however I want).

    You're doing a great job and these big decision are hard.

    Thanks for sharing.
    Heather

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