Let the Winter Games Begin

Two weeks ago, we started anew on a series of medical appointments for my youngest son.

With the scheduling of appointments, arranging childcare for the boy being left at home, coordinating with my husband, and juggling our regular weekly therapies, the preparations alone are exhausting. It feels like our family is leading up to a big event, though not a welcome one.

I know there is no room for error or for the challenges that inevitably come up with such a packed schedule (like last Wednesday, when I lost my way and became late for a doctor visit because my brain is on overload). But we push through it. Just like we’ve done each season when the follow-ups and blood pokes to stay on top of potential issues all come up too soon. At least, we had a frequent flyer reprieve since the chunk of appointments and follow up phone calls around Raphael’s surgery last summer.

This go-round, instead of being the one to do all the schlepping, my husband has already taken Raphael to two of the appointments. It’s an inestimable help since I don’t get paid time off at work like he does. I just have to get my job done, after hours. Like at 2 a.m.

People tell me they don’t know how I’ve managed all the appointments in the past year. I will tell you: I don’t know.

Aside from the typical 18-month well care check, this set of appointments includes ophthalmology, audiology, dentistry, pulmonology, nutrition, and our first meeting with the Special Care Clinic at The Children’s Hospital, for which I had to be interviewed to have my son seen. I’m hopeful that obtaining care on a consultation basis in that clinic will help us connect some of Raphael’s disparate issues, which is something his primary doc, a family physician, really can’t help us with.

We certainly have our challenges with caring for Raphael and helping him learn to do all the things typical children do: self-feed; hold his own bottle; eat table food instead of just purees; learn how to modulate his emotions and get over his stranger danger (so maybe his folks can get a little break); crawl, and someday, even run…

Overall, at almost 18 months old now and with a past like his, he is doing remarkably well. He is slowly growing, adding vocabulary to his sign-language repertoire, and pulling himself up whenever he can. This boy really, really wants to walk. But his physical self can’t keep up with his cognitive desires.

Still, we know how much we have to be thankful for. His very life. And we never forget it.

We spent Thanksgiving with Greg’s brother’s family. My brother-in-law’s son, Liam, is just four days younger than Raphael. We watched our three-year-old, Elijah, play with his cousin in a way he can’t with Raphael. The boys chased each other around the house and danced together to Queen’s We Will Rock You on U-tube.

The brothers, my two sons, should be able to do that together.

Sure, they probably will, some day. That doesn’t eliminate today’s heartbreak.

About elizamom

Colorado mother of two small boys. One happens to have Down syndrome.
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One Response to Let the Winter Games Begin

  1. Pingback: Worth the effort | The Upside

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