Tuesday, September 20, 2011

Thankful for a limited vocabulary.

Today I came across a list of words that I am thankful that I not only can't pronounce, but that I have no idea what they mean. I was visiting "CarePages" because my husband's aunt just found out that her cancer is back and it's a pretty grim prognosis. She created a page there to share her journey and for her friends and family to stay in touch and offer support. The pages are set up with keywords so you can find other people who are going through similar journeys and gain/offer support through their pages. After visiting Karen's page, I decided I'd do a quick search for Trisomy 18. I know there are LOTS of sites out there just for T-18 families, and I have kinda steered clear of them after I got pregnant with Ashley, just not wanting to "go there". But I did the search anyway and came across this particular mom's profile. Her son didn't have full Trisomy 18 like Kristen, but it still made me realize that could have been me.
My son Hunter has tetralogy of fallot and just had it repaired on 11/18/2008.
Hunter has had a lot of surgeries including cleft palate repair, nissen fundoplication twice, hernia repair, ureter reimplant (kidney), mandibular distraction, mastoid surgery, and before the heart repair he had a right BT shunt.
So on the days when I am sad and bitter that I only got 64 hours with Kristen, I need to remind myself that any more time than that would have also come with a whole new vocabulary. These kinds of conditions and surgeries are just the way of life for many Trisomy families. Kristen had a number of hard to pronounce conditions herself, many of them I never did ever know, because it was obvious pretty early on that those conditions in and of themselves, weren't really going to matter in the long run. (Although that idiot cardiologist at St. Joe's who tried to explain heart abnormalities to a completely delirious and drugged up Momma sure was proud of himself and his vocabulary!)
But in the midst of my own "issues" that I have in dealing with all that surrounds Kristen's time here, I can be thankful that my limited time with my baby also came with it the blessing of a limited vocabulary.

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