The support through unknown

As I mother, accepting and talking about the real possibility that there is something amiss with your child is very hard to swallow and at this point still hard to talk about without choking back tears. Not that you want any of these tests to come back abnormal, but getting partial results and some sort of direction gives us more faith in our neurologist. But only having a partial answer may actually be harder than having no answer. We know there is something going on that is affecting both his muscles and his brain, and no specific course of treatment yet beyond what we’re already doing is very hard to bear. Not knowing the full answer and that there may (or may not be) something more we can do for him, makes me feel even more helpless than I already do.

With these spasms only have kicked up a notch (or many) since late last week, yesterday was the first time I was by myself with Riley all day while Chris was at work. Yesterday and today it’s been very hard to have my happy smiley boy one minute, and then have this fog roll in the next. It seems like he’s himself in the mornings, and then pretty lethargic in the afternoons when spasms seem to be most present. It also doesn’t help that it seems like the spasms are making him tired in general as well, and that’s when they happen. Until his medicine arrives tomorrow, all I’ve been able to do is cuddle him through it and rub his head. They are not harmful to him at this time, but you can tell that he doesn’t understand it sometimes, and sometimes he’s tired enough to sleep but they aren’t allowing him to do so, so he gets frustrated.

However, coming out and sharing with everyone our struggles and journey that we are on, and receiving the overwhelming love and support, brings me to tears. Happy tears. I admit I’m still not a fan of having everyone know, because it means that it has to be real; seeing how supportive everyone is means the world to me, to Chris and to Riley. He couldn’t have been born into a more warm and loving family and amazing friends. Thank you for being there for us and him as we continue to search for more answers and treatments.