If I look absolutely thrilled, I was. Because the baby in my arms is none other than the beautiful Vera, who at less than a year old, has made it through a surgery, fought her way back from the brink, and made it home for her very first Christmas. For parents in the Trisomy 18 world, experiencing miracles like this is a painful privilege - the joy comes enmeshed with heartbreak, too much anxiety and too little sleep.
If you're a parent in these shoes and have asked "why me?", well, we are the ones who have been chosen - to know life, raw and unplugged. We live each day intimately acquainted with the basics of life - breathing (how hard, how fast), sleeping (what time, how much, how fitful), and waste matter (how much, how often, consistency, texture). And within these basics of life, are where its profound meaning is unearthed.
It was such a privilege to hold Vera today and momentarily feel the strength of her grip in spite of her frailty.
And the best part? We were decked in red and white stripes, a simply delightful coincidence!
Vera's daddy's ingenious contraption - A microphone holder!
Now why didn't we ever think of that? Now more
tube-feeding parents can take a much-needed break : )
1 comments:
Happy New Year to you and family. Many more good and better days to come full of health and joy and laughter. Yes...what a clever way to hold the tube :))
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