Some days I wonder how it is that we manage the constant swing between the highs and lows with Max. We celebrate the achievements with huge roars of excitement. We do our best to not let set backs completely side swipe us. But there are days where both Scott and I feel the burden of autism weighing down on us, trying to break us. The familiar feeling of sadness and desperation and wondering "is this really what my life has become?" as one of us deals with the fact that at 5 years old, Max is still not fully toilet trained. He has made tremendous progress in so many areas, and for that we are grateful. But the daily grind of cleaning up the BMs of a child who is as big as kids in grade 2 is a lot to handle. I think it is safe to say that once this milestone is achieved, we will be honking our car horns and celebrating like our neighbours do during World Cup.
It is easy to get frustrated with Max. On the outside, he looks so incredibly normal. He is a gorgeous child, with a smile that wins over everyone he meets. The disparity between his physical appearance and the reality of his diagnosis is jarring. The difference between him and Cameron makes me shake my head. Most of all, the not knowing what he is thinking, and trying to fathom the frustration he must feel being unable to fully communicate with us makes me so very sad. I wonder if he will ever be able to fully express the things going on in his brain? It's the hope and the belief that this is possible that keeps me going. I just pray this happens sooner rather than later.
Hope and belief... Amen! It's how I get through the challenging days! My Ben is having similar BM difficulties. Some days just seem so much harder! That's why your blog is such a comfort! Knowing there is another Mom out there who is also scrubbing poo off the floor or rinsing out yet another pair of underwear, in an odd way gives me strength!
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