Tonight I was reminded again that sometimes in the crush of the day to day, I need to remember to sit and be grateful every now and again.
It started innocently enough. I was dealing with a typical “first world” problem and rearranging some stuff in our refrigerator so that I could somehow wedge more stuff in. I was in the middle of marveling over how many different mustards we had when my eye was caught by a small brown bottle in one of those shelves in the refrigerator door.
It was the Enalapril – a medicine that we gave Julia after her surgery to protect the delicate work that the surgeon had done on her heart valves. We stopped giving it to her after we got the okay from Dr. Weinhouse last May. That was over a year ago.
But for just a moment, as Jocelyn finished cleaning up from dinner and getting ready to meet a friend for coffee, it all came flooding back.
I sometimes marvel at how seldom I think about those first intense months of Julia’s life when the needs of little girl now sleeping happily upstairs utterly overtook our household. But I marvel all the more at the little touchstones that God puts in my path to remember and say “thank you”.
It took a small brown bottle of long-expired medicine to remind me of the nights of sacrifice common to all new parents, painted over with a thin watercolor tint of uncommon terror as we painstakingly documented every milliliter of fortified milk that she took in. Staying mindful of the 150 kilocalories per kilo of body weight per day target that the docs had set for a healthy weight gain, we celebrated when she was able to fight through the fatigue of a failing heart and take in a whopping sixty milliliters in one feeding. And it often felt like the world was going to end when she spit it up like any normal baby does from time to time.
But we stayed even more mindful of the drugs that kept her comfortable before her surgery and protected her heart after we brought her home. Dosing, timing and praying to God that she wouldn’t hurl it up after we gave it to her. Dr. Weinhouse told us in so many words (and out of his love and concern for us) to chill out a little bit, and toward the end we started to.
But before too much longer, it was done. May 30th, 2011. Julia took what we pray was her last dose of heart medicine for a long, long time.
And as you can tell a year later, she is thriving. Now we have a whole boatload of new challenges: therapies to get her strong and mobile (not much longer!), negotiating with the school’s special education department for services over the summer (no dice) and thinking through the implications of the selection of a new school superintendent. But for all of the challenges, we find ourselves enjoying the present far more, even as we prepare for her future.
But sometimes it’s important to remember what has passed, remember God’s presence in it, and say “thank you”.
Oh yeah, and remember to clean out the fridge a little more often!
Good to be back…
One Response
Your gift for describing the emphasized ebb and flow of daily care (and supersized anxiety) for an infant with special needs makes those of us who went through our own trials feel understood, Chris. We are so thankful, along with you, that your beautiful little miracle doesn’t need that brown bottle of expired meds 🙂