The hard

Christopher and I were lounging in the pool over the weekend and I realized it was time for his Vimpat, one of his seizure medications. I asked my husband if he would go inside to grab me his syringe I had packed and a water flush. We floated over to the pool steps, I administered his medication and flush, and then we pushed off.

Alexander was sitting on the edge of the pool and said “taking care of Christopher is hard.” Sometimes he says these things just as observations and no other reason. The older he gets the more and more he realizes what needs to be done to care for his younger brother. And the older he gets the more he realizes their differences. I asked him if he would ever want to help me care for Christopher and he said maybe, but that he wouldn’t want to do the hard stuff.

I thought to myself, no, Alexander, I wouldn’t want you to do the hard stuff either.

The hard stuff is the stuff he can’t see. Or feel. What he sees is mostly the “easy” stuff. He watches me fill med syringes and administer them. He watches me give Christopher water boluses and set his food pump. He observes me carry his brother to the car and buckle him into his car seat. None of which is typical for a child his age, but for us, it is. He’s watched police and EMTs enter our home on numerous occasions and knows his job is to get his youngest brother and occupy him. He stays calm and stays out of the way. He’s had to grow up so much in the last seven years. He observes us perform many every day tasks for Christopher that are above and beyond the care of a 7 year old. But they’re our normal, and for me, many of them are our easy.

The hard stuff is so much more than the every day.

The hard stuff is the inner dialogue that goes through my mind on an hourly basis.

The hard stuff is questioning whether we are doing the right things for Christopher.

The hard stuff is frustration finding the right equipment or fighting for something he deserves.

The hard stuff is proving his capabilities and worth to the world.

The hard stuff is finding ways to teach him new things and keeping him engaged.

The hard stuff is trying to improve and make progress for nearly every developmental milestone.

The hard stuff is holding him while he’s inconsolable, and wondering what’s wrong and how to help.

The hard stuff is worrying about the next seizure. The next illness. The next hospitalization.

The hard stuff is knowing we, his parents, will have to care for him forever.

The hard stuff is the mom guilt.

The hard stuff is managing a rare disease with so many unknowns.

The hard stuff is the fear of losing him.

So no, my sweet Alexander, I would never expect you to do the hard stuff, I’ll keep that to myself.