31 for 21: Worth the effort

Elijah, 4, and Raphael, 2, sitting on the front of an old train engine

Except for one last end-of-summer event, a Day out with Thomas the Train, I’ve been slowing down my kids’ activity coordinating efforts and spending my time coordinating healthcare needs. As soon as Elijah’s days became occupied with preschool, I started scheduling long-overdue appointments for my younger boy in earnest.

Raphael and I have visited the cardiologist (more about that later – it’s good news!), seen an orthopedist and orthodist, made a well-check and a sick visit, and met with a nutritionist. I’ve scheduled an ophthalmology appointment and held several conversations with pulmonary and gastroenterology folks. And there’s more to come.

Next week, we have an appointment with the pediatric Down syndrome guru, Dr. Fran Hickey, and other rock-star specialists at the Anna and John J. Sie Center for Down Syndrome at Children’s Hospital Colorado.

We are hopeful to finally meet with a physician who will look at Raphael holistically, rather than focus on an individual body part or immediate concern.

We had consulted with a special clinic last year where we thought we would get someone to help us coordinate care for our son’s assorted medical issues, but that meeting was largely unsuccessful.

For one, we had Elijah with us, which was exceptionally distracting. (Lesson learned. Even in the unlikely event that two parents attend an appointment, cancel it if you can’t get a babysitter for the uninvolved kid.)

Aside from repeatedly pointing out what a nuisance our then three-year-old was being, the special care physician kept trying to sell us on using the clinic for primary care and didn’t really listen to us. His written care summary was filled with errors, such as saying my son had had heart surgery. Sorry, but that’s not the organ Raphael had operated on.

More than once, our visits with general practitioners and some specialists have involved “diagnostic overshadowing” (as Dr. Hickey would say) where Raphael’s health concerns are overlooked and written off simply because they are associated with his genetic makeup. It’s as if he’s expected to walk funny so why bother trying to do something about it?

End result: I work that much harder to advocate for my son and give him the care he deserves.

Sure, it takes crazy effort, but that isn’t to say life with a child who has Down syndrome – or any health or developmental issues for that matter – isn’t worthwhile.

Contrary to what women who abort their unborn baby because he or she has an extra copy of chromosome 21 may think (a startling 92 percent of women who get a prenatal diagnosis of Trisomy 21 terminate their pregnancy), having a child with Down syndrome is nothing dreadful.

In fact, it is the ultimate gift. For reasons too complicated to express right here, having Raphael has been one of the best things that has happened in my entire life.

Me nuzzling Raphael when he was 6 months old

About elizamom

Colorado mother of two small boys. One happens to have Down syndrome.
This entry was posted in Down syndrome, Motherhood, Parenting Special Needs and tagged , , , , , . Bookmark the permalink.

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