Tomorrow, six-year-old Avery undergoes open heart surgery to repair an atrial septum defect -- a hole between the upper chambers of his heart. Heart defects are incredibly common in kids with Down syndrome, found in about 50% of the population. Avery is the son of my dear friend, Jennifer, who I met online and was lucky enough to spend some time with at the Down syndrome conference in Boston last July. Jennifer is the author of "Roadmap to Holland", chronicling her first two years as Avery's mom -- Avery is a fraternal twin and while he has Down syndrome, Bennett does not. The Groneberg family lives in beautiful Montana and Jennifer is one of the most eloquent writers I've ever had the pleasure to know...finding this amazing community of moms who champion their children's abilities and share the good, the bad, the ugly with one another has been one of the greatest gifts of my personal journey as Lucas' mom.
The family learned at Valentine's that Avery would need surgery to repair the ASD so they're in Seattle at Children's Hospital now. If you're reading this, please take a moment to say a prayer for Avery so he has a successful surgery, all goes exactly as planned, and he's on a quick path to a full recovery. Beyond having son's with DS, Jennifer and I will join the "heart moms" club -- for mom's whose children have had open heart surgery.
MARK YOUR CALENDARS: Lucas is scheduled for open heart surgery to correct an ASD (just like Avery) at Miami Children's Hospital on Friday, June 5th...it seems like an eternity away and yet each day it comes closer and looms bigger. I've been told it's the "easiest" of open heart surgeries to perform, but, hello....it's OPEN HEART SURGERY on a toddler!!! Most of the time, I'm numb to it because I just can't start processing all the angst I have around coming up against another unknown -- like we did with Lucas' diagnosis at birth. We go on Monday, March 16th, for a follow-up echocardiogram and ultrasound to check the teeny tiny hole, which if left uncorrected could lead to pulmonary hypertension.
Our time will come soon enough, so for today, I would be thankful if you'd keep Avery and his family in your thoughts.
2 comments:
We'll keep Avery and Jennifer in our thoughts now and you all in ongoing thought and prayers for June. Lukas is such a beautiful boy. The picture of him feeding the - goat? - is just wonderful, as is the one on his dad's shoulders.
Hugs from Colorado,
Sandra
oh, my. i'm tearing up reading this, i feel exactly the same way.
thank you...
xo
Post a Comment