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.