31 for 21: Meeting life’s challenges

yellow and blue Down Syndrome Awareness ribbon graphicI took the challenge to post 31 times in 21 days in honor of Down Syndrome Awareness Month, but who’s counting?

I made it through the first half of the month with the requisite number of posts, but then Raphael got sick, work piled up, and appointments I had scheduled are suddenly here, starting with a swallow study at Children’s Hospital tomorrow.

Anxiety creeps in.

Family life is a house of cards. For a long, long time, things have been so tenuously balanced that the slightest upset turns everything into commotion. And by balanced, I mean everyone’s most basic needs are met, but there are no breaks for me.

Today, as I took Raphael to school, Greg attempted to bring Elijah to his school, but the car broke down. So rather than use the time I designated for work, I scrambled to find a neighbor to take Elijah.

Our car being towed

Greg had to take off work, which rather than be a break for him, adds complexity and interruption. My afternoon looks like this: Greg is telling me about something Elijah said, and about the tow truck that’s coming, and about how he was supposed to do a news segment on TV tonight. Meanwhile I’m trying to politely ignore him to answer work e-mail at the kitchen table. (You know, if I called Greg at work to tell him stuff, I’d be in trouble.)

We had two sleepless nights about a week ago when Raphael caught a cold that turned into his typical nighttime vomiting/high fever/labored breathing scary thing. It’s because of his anatomy.

Raphael’s airway is too little, and his uncoordinated swallowing makes it too hard for him to deal with nasal congestion. So he pukes. Then he freaks out and pukes some more. His crying pushes his fever higher. It went above 104 degrees the other night.

We lay Raphael on the bed with open pajamas and cover him with wet washcloths to bring the fever down. He can’t keep medicine in. His nearly vacant eyes plead with us to stop the misery. We watch his lungs work rapidly and terribly hard.

Past worries come rushing back.

I hurt for him.

We wish we still had oxygen at home and whisper about whether it’s time for an urgent care or ER visit. We hope his brother remains asleep.

When it was clear this virus was not improving, we started Raphael on antibiotics. They worked. He’s improving.

But now the medicine is causing diarrhea. I knew this would happen. The extra probiotic supplementation I gave didn’t help enough.

Aside from respiratory concerns, Raphael has digestive problems. Now I’m trying to get his gut back to normal but he’s got five more days on antibiotics, so this is going to take a while.

Since sleep deprivation is a way of life for me, losing those four or so hours a night I usually squeeze in means I’m practically sleep walking through my days. Except I can’t slow down, or there would be no dinner, defaulted bills, incomplete forms, and unmatched socks. There would be no time for children to be children.

So I’m like a really fast-moving zombie.

The light in my tunnel is growing dim, again.

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About elizamom

Colorado mother of two small boys. One happens to have Down syndrome.
This entry was posted in Family time, Parenting Special Needs, Reactive airway, Sleep Deprivation, Time Crunch and tagged , , , , , , , . Bookmark the permalink.

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