Think on Such Things

So, we have this incredibly insurmountable week before us. At least, it seems insurmountable to me. You see, we have a little boy who, to say the least, is incredibly medically complicated. His diagnoses have left him famous, but for not the reasons that most parents want their kiddo famous for. Most parents may admit to wanting their child to gain some sort of notoriety. Doesn’t that explain the rise of tv shows in which kids are highlighted for their rare talents? I mean, someone has to drive and apply for that child to be on TV. Maybe it isn’t that type of fame you are seeking for your kid. Maybe you want them to be the best dressed at school. Or maybe even you have nobler aspirations, like you take great pride in them being known for their kindness. Hey, I’m not pointing an fingers here. I’m right there with you. I absolutely swell when someone tells me that they love hanging around my kid. Or, that they want to have a playdate with them. But what happens when your child becomes...

This week has been a doozy! We’ve gone through weeks like this before and we thought that they were just the new normal that we had to get used to. Weeks where Moses has these crazy highs and lows. A week where we batten down the hatches and kick into survival mode. No budgets. No showers. No breaks. These weeks make me see the wonder of dry shampoo, wet wipes, credit cards and early bedtimes. They happen about once a month or maybe every 6 weeks. Truthfully, I’m not too sure about the timeline because these weeks are a blur. With everything that has been under concern with Moses's GI tract, I wondered if this were another ileus. That thought drove me to email his specialist and ask for an x-ray. I felt like he was in a lot of pain, besides the fact that he kept saying “owie.” When he’s in pain, he seems to make raspberry sounds with his mouth a lot, like 90 percent of his waking day. Which then causes bleeding lips. His stimming activity is at it’s peak and he can’t seem t...