Saturday, April 30, 2011

What if everything matters? Or worse, nothing?

Malachi sits in what we call the "King's Chair," a twins nursing pillow I never ended up using for nursing but constantly put him in to round his back, make his hands more accessible, and encourage his brain to develop flexor tone. This is one of the many "little" things I do to try to improve his chances of motor control.
© Jessie Kirk Photography


I’m haunted by the idea that everything matters.

That every second, every minute, every day I am irrevocably altering the course of my sons’ development. I worry that through my actions or inactions I am setting them up for long-term disasters.

This may sound crazy or self-important or self-pitying. But the simple truth is that I am affecting them just by being around them and interacting with them.

Let me give you an example. I almost always hold them on my left hip because I need my right hand to do things. Malachi has trouble with balance and almost always leans to the left when sitting in a chair and his head tilts to the left even while laying on the floor. This means that the muscles on the right side of his body — those that I'm supporting when I hold him — are weaker; they are unable to pull his body back upright.

You're probably thinking that Malachi's damaged neural connections are just more severe to his right side. I might think that, too, if Jaden — his genetic copy without brain damage — didn't also lean to the left all the time.

And that's just something that I've noticed. What about the other million things I do without thinking that are altering the course of their brain connections?

When I was pregnant I worried about stuff like that — if I was eating too much candy or not enough vegetables I worried they might be bad at math or something. Now I know that much more serious things can happen. One poor habit might mean the difference between Malachi walking when he’s two or when he’s three, or never being able to use Ziploc bags or pour juice. 

What if something I can do now will allow his brain to fix itself so that that doesn’t happen? What if something I did means his brain will never be able to bridge that gap?

I used to think I would be the parent who was blasé about everything. I started out fully believing I would not get worked up over silly things like SIDS because those sorts of things are exceedingly rare and would never happen to me. But then horrible things did happen to me and horrible things can still happen to me and I have to do everything I can to prevent them.

I’m haunted by the idea that everything matters.

And yet, I'm even more terrified that nothing matters.

This seems to be the view of our developmental pediatrician. His attitude is that Malachi's brain will probably take whatever course it was going to take whether or not we do anything. Oh sure, physical therapy might smooth things out a little, maybe, but the damage is there and nothing will make it go away.

In some ways, this attitude is relieving. If there's nothing that can be done, then there's nothing that I have to do.

Sometimes, there really isn't anything you can do. There was another boy in the NICU at the same time as my boys who for some reason didn't have a right foot. Perhaps he had other problems, too, but I couldn't help thinking that if Malachi's problem was just that, just a missing foot, I could deal with that. OK, no foot. Got it. Normal walking won't be possible, but there are options. Grieve, move on.

With brain damage, it’s so much more complicated and so much harder to know what to do.

There’s this myth out there — I believe it’s a myth — that it could amount to nothing at all. That since babies’ brains are still developing, they can wire around the dead space and ba-da-bing ba-da-boom, basically normal kids. Then the spectrum ranges all the way up to severe retardation.

In between is reality and it’s messy. No brain damage is exactly alike but if it were, the rules governing which babies do better than others are poorly understood. It could be that by doing big things like breastfeeding or small things like not putting socks on so his feet can get maximum input, I’ve vastly improved his chances of normal movement patterns. 

Or, it could be that I’m wasting my time and energy on things that really only serve to make me a frenetic mom and only luck and chance will decide how normal his movements will be.

Does everything matter? Or nothing?

I have a sneaking suspicion that everything matters, but we would be happier acting like it's nothing.

13 comments:

  1. It gets better, I promise. The thing is, you'll probably never know if it mattered or if it didn't. Maybe someday in the distant future there will be a breakthrough and you'll say to yourself, "Gosh, I wish I'd know to do/not do that!" but it's unlikely that it'll happen when the twins are still young.

    I used to drive myself nuts thinking those thoughts - the early years are rough that way - but it eventually begins to wane and you start to accept that you have done your best.

    ReplyDelete
  2. When I'm full of energy and optimistic, everything matters. When I'm exhausted and negative, nothing matters.

    ReplyDelete
  3. Thanks, Andi. It's good to hear from someone who's further down the path.

    That's funny, Kathy, I'm the opposite. When I'm feeling pessimistic is when everything matters and when I'm optimistic I feel like it's OK to let things slide because he'll get there eventually.

    ReplyDelete
  4. Ugh I wrote this whole long comment that didn't stick.

    I think I'm starting to lean toward the theory that, with the exception of medical interventions like surgeries and the botox and such, the other things matter to small degrees. If everything mattered and everything could fix it - well, doctors would know exactly what to tell us to do to "fix" our kids. No amount of therapy can make a kid with CP do something they just physically will not be able to do. I think it can perhaps speed them up to reaching their fullest potential.

    In the end you do the best you can. Malachi doesn't live in a bubble where it's just you and him and you both have endless time and energy to devote to various things that may or may not help. You have another child and a husband and a house to keep and meals to make and errands to run and a life to live. As does he. I try to strike a balance - not only what will benefit Julia physically, but emotionally as well. And I assume that as she grows, and she can give more input and hopefully she can tell us why she's doing things the way she is, that will change too.

    ReplyDelete
  5. That's so true, Amy.

    At my first UCP meeting, a woman with a 15-year-old with CP said she was really intense about therapy for the first three years but then realized that why she was doing it was so that she could get to this ideal of "normal," but "normal" kids don't go to therapy all the time. So, she decided to give her son the school year off and only concentrate on therapy during the summer.

    Her words have really stuck with me. Pushing our kids — disabled or not — to achieve something they aren't capable of is much more detrimental than not pushing them hard enough.

    ReplyDelete
  6. We adopted our 4 year old daughter from Ukraine in December. She was born at 29 weeks in Ukraine in September 2006. She spent 4 months in a hospital and (we were told) suffered a stage 2 brain bleed that resulted in spastic diplegia. Once she got well enough, they sent her to an orphanage for the next 4 years of her life. When we met her, she weighed 26lbs & couldn't stand or walk on her own and could hardly sit up straight on a couch. We had to pry her legs apart to put her in a carseat to ride home from the airport. 4 months home, her first set of AFOs ever, a pediatric walker, some stretching but not a lot and none professionally yet (because she is understandably fragile emotionally) and she can sit up on her bottom on the floor BY HERSELF, is using the toilet alone, and is starting to walk. So... yes therapy is great. Early Intervention would have been marvelous and she would not have been in such a poor physical state when we met her, but she has come so far... We are seeking medical treatment and therapy for her, but we really just encourage her to be a kid and go play with her brothers because THAT is the biggest motivation of all. She wants to just do things like everyone else.

    ReplyDelete
  7. Thanks for sharing your experience!

    Wow, what a special little girl and how amazing that she's gone so far. Shows what a lot of love and attention can do!

    ReplyDelete
  8. Shasta - now that Ben is almost 4, I'm beginning to believe that what really matters is "creating independence" or "allowing independence"...however you want to put it. I mostly think that PT, OT, etc. help but aren't huge...so at this point, we still do PT and OT, but if we need to take some time off or cancel sometimes, I don't stress about it.

    We like the philosphy behind Conductive Education. Basically, their whole philosphy is that your home should encourage Malachi to be as independent as possible. And this is where (I think) parents make all the difference in the world.

    Here's a link to a good description of "Conductive Education or Conductive Upbringing"

    http://massagermommy.blogspot.com/2010/03/information-about-conductive-education.html

    ReplyDelete
  9. (Commenting several months after - as this post was linked at the bottom of your top post.)

    What Cary said.

    And, here is another link (with no recent posts but) with good information:
    http://conductiveupbringing.blogspot.com/

    And, Shasta, if I may just scream a bit about what a good writer can convey! This post is such an exquisite expression of what many parents experience. My attempts to explain the extreme dichotomy of everything vs. nothing matters have been paltry compared to this post. Thank you. Barbara

    ReplyDelete
  10. What a good way to say what we've all experienced - everything does affect the outcome, but there is only so much we can control. Always keep your eyes and mind open for things that can help, but don't waste time desperately seeking the impossible answer.

    ReplyDelete
  11. So much of this felt like it was my own heart on the page. I struggle with this alot because there simply isn't enough time or money for all the things I could or should do. My husband has to remind me that I can't keep up the pace that I try to help Abel at. Not for another year. Certainly not for his whole life. I do believe that everything "matters". I think the power we have over that is a bit of an illusion. After all the goal really isn't a perfect life. There is a big difference between a sheltered perfect life and a life well lived. I think the struggle that my family faces will give us the things we wanted most. Compassion, patience, wisdom, strength . . . to make a positive impact on the world. If I can remember to keep that as my focus instead of beating Cerebral Palsy it makes everything else fall into place.

    ReplyDelete
  12. I love this picture. He is so handsome. He has such brilliant blue eyes. I hope my baby gets those. ;)

    ReplyDelete
  13. i also wonder about this too. i read blogs of babies who come out completely fine from brain injuries, showing no signs at all. and i start wondering - did therapy help them or were they meant to end up completely fine even if they didn't have therapy? oh, and then i start thinking that maybe if those kids had an MRI today, it would show no brain injury at all. maybe their original injury was just temporary brain swelling that went away on its own. unfortunately in my case, my son did have a real stroke. sometimes though i like to fantasize that it's all one big mistake.

    ReplyDelete

LinkWithin

Related Posts Plugin for WordPress, Blogger...