Battles against terminal illness, anxiety, and life!

Small Steps

We aren’t exactly sure the exact day we started wondering if something was wrong.  Braden was definitely older than two.  It was somewhere between two and two and a half.  My best advice in any situation where a parent feels as if something is off or not quite right, is to trust your gut.  We didn’t stop until we had an answer, even if it felt a bit as if we were on a wild goose chase.  However, each doctor or specialist started to say the same thing.  We kept hearing the word neurological.  So, by the time we made it to the neurologist, we knew we were in the right spot.

I’m going to take a guess that Braden’s case is probably unique in that he was adopted and his biological mother used illegal substances when she was pregnant.  I don’t think there are the words to express how angry this makes me.  Each time I get all tied up about it, I remind myself that she did allow him to live.  If she hadn’t, I would never know just how sweet his kisses are and how high he makes my heart soar.  My fear is that this fact, which we have treated as private information until now, may have interfered with his A-T.  I will have to ask if that’s possible when we go to Johns Hopkins in June.  This fact also has lingering side effects that we struggle with on a daily basis.

Before we even got Braden’s diagnosis, we started making small steps towards helping him with some behavioral concerns.  At this house, it’s all about baby steps.  We feel like Braden is trying to climb a mountain without any training, and so we approach it one small step at a time.  One of our challenges is eating.  It’s clear that Braden’s ability to handle a spoon and fork have not improved at all since we started the idea of using them.  However, he used to have immensely better table manners and how he ate was much more appropriate.  It’s clear that there is anxiety for him when it comes to eating.  So, we’ve broken it down for him.  We’ve made eating a one on one experience, a bonding time.  We’ve limited the amount of food he has in front of him.  We’ve changed him from a booster seat to a high chair without the baby parts (basically a chair with a high back.)  Although, we pick up his “new chair” (one we’re trading with the awesome owner of Kid Venture here in Huntsville!) this week.  We’ve purchased tableware that suction cups to the table.  We have curved silverware.  As many distractions that can be are eliminated, for example the turning off the tv.  It’s a production.  This is our life.  This is the consequence of not only being exposed to drugs, but of having A-T.  This is our reality, and it’s hard work.  We don’t mind the “work,” but it breaks our hearts that Braden has to work so hard to do something that comes so easy for most kids.

I will try to be honest here, so that other children who might follow might get an idea or two of how we manage the day-to-day.

Today is another day that I get to kiss my kids, and for that I’m so thankful.


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