He cried loudly when I handed him off to the nurse and nurse anesthetist at the OR double doors. That’s the first time he’s ever cried for a hand off before a surgery or procedure. It made my heart sad, but at the same time, lighter. As I turned and walked away one side of my mouth turned upward in a smile, because that sign of separation anxiety indicates growing cognition. And I’ve learned to squeeze every little bit of good out of the bad.
Last week was a big, bad week for Nathan. He was under general anesthesia for three hours, was scoped and scanned, developed a UTI that we suspected on Monday but didn’t start treating until we got culture results on Wednesday, he spent three hours cuddled in my lap during an aerodigestive appointment radiating off heat of his UTI fever, and had a follow-up neurosurgery appointment two years post-op. It was a big week. It was an information gathering week.
We have some results and are waiting on others. What results we do have, have led to more questions. We do have a plan in place for new meds and more tests. I keep saying that Nathan is my mystery baby and we struggle to understand his body. How it works, how it doesn’t, how we can help it, how we can’t. It’s a tension that I’m struggling to live in, but I truly mean it when I say, I squeeze the good out of the bad.
The goodness last week was in the sick baby cuddles, the big kid belly laughs, the plopping down on the couch with my husband after a long day at the hospital. The little things were big things to be thankful for last week. The Chick Fil-A dinners (yes, twice) on the way home, the hospital meet-up with another Cri du chat mama, a quick play at the park by the hospital, and the whole family sleeping soundly from being so tired.
This week we have NO planned hospital or doctor’s visits.
The LORD is my strength and my shield; my heart trusts in him, and he helps me. My heart leaps for joy, and with my song I praise him.” – Psalm 28:7
We are gearing up for Mac’s fundraising for Wheels for the World. His class is raising money to send refurbished wheelchairs to people all over the world who don’t have access to medical care. Wheels for the World is a ministry of Joni and Friends.
To raise funds, Mac will host a garage sale and lemonade stand at our house on Saturday March 19th from 7:00 am to noon. If you’re local please, please come out and support him.
My book, Beauty in Broken Dreams: A Hopeful Handbook for the Early Years as a Special Needs Parent, is now available on Amazon!
Also be sure to check out my list of Favorite Books on Disability!