The other evening as Dean and I were talking over the happenings of the day I said, "Do you think I have accepted Joseph's FASD?" This was a loaded question because I was struggling mightily with FASD and the repercussions it has on our family.
See, Joseph does best with a very low key life. Most times he is satisfied with this, content even, but occasionally he has a "good day" with a higher than usual ability to reason which causes meltdowns. It is on these days that he feels frustrated with the restrictions FASD has placed on his life.
Recently Dean bought a small four wheeler and Joseph begged to drive it. Steering, controlling speed and watching where he is going is more than Joseph's brain can do at once. However both girls were driving it and in his mind it wasn't fair if he couldn't as well. We were faced with a dilemma. Saying he can't ride would bring on an epic tantrum. Explaining that he wouldn't be able to would go over his head, because in his mind if his little sister can, so can he. Letting him ride would over exert his brain bringing on melt downs from too much stimulation. Too much stimulation results in several days recuperation, while a tantrum is over and done with. It was a no brainer, until my heart got in the way...
Joseph had been having a rough day and the last thing I felt like dealing with was several more days of increased behavior because we left him do something he was incapable of handling. On the other hand, I felt cruel saying no because I knew how heart broken he would be. In the end, he rode the four wheeler, it didn't go well and I dealt with several days of over the top behavior from over stimulation. After he rode the four wheeler I was rebelling deep inside because I knew what the next few days would be like, hence the discussion.
Dean replied, "I think you have accepted it as a whole, but there are times it takes accepting all over again." I can't help but wonder what life would be like if Joseph could work and play alongside Tristan, if he could do new and exciting things without having to suffer for it for the next days or weeks? Think of the fun he could have with his cousins, the freedom Dean and I could have if we wouldn't have to watch him every moment of every day? If I am honest, it makes me angry. I am not angry at him, or his mom - because quite honestly, neither of them are to blame. I am angry because FASD robbed us of what could have been.
So have I accepted that this is going to be a lifelong challenge for Joseph and for our family? Most days, yes. Other days I grapple mightily with it. On the days when I struggle, guilt is also present because why should I feel this way when in reality Joseph is the one who has to work through the difficulties every moment of every day. In the end, it comes down to making the best of the hard times and cherishing the good times.