Aloha Readers of Tennis, Trisomy 21 and Taking in Life Together,
I’m grateful to let you know our daughter’s heart operation went well this week.
We’ve known for some time it was needed — although we found out afterward that it really wasn’t.
Frequently, children born with an extra chromosome have heart defects, some quite serious.
We had learned about our daughter’s extra chromosome before she was born. My husband and I visited many kind families, referred to us by friends, who shared their experiences of having a family member with an extra copy of chromosome number 21. For some, visits to emergency rooms and hospitals were monthly, sometimes weekly.
When our gorgeous daughter was born, I held my breath. Nine years later, I’m slowly exhaling.
She was stunning in every way, alert, active. She has always loved words, and speaks, reads, and writes two home languages.
On our rare visits to the doctor, her beautiful heart has been listened to carefully.
For years, doctors have instructed my husband and me about PDA in which abnormal blood flow occurs between two major arteries connected to the heart. The PDA, or patent ductus arteriosus, is a persistent opening between those two arteries. The opening usually closes after a baby’s birth.
In our daughter’s case, doctors heard a light murmur, light enough that we were told we could wait to see if the opening would close on its own.
In nine years, our daughter has become extremely active, has grown tall, has held her own with classmates in every regular school room she has graced.
Last Christmas, on a whim, my husband, daughter and I drove to the beautiful ocean in Oahu to meet a friend who organizes official marathons and also fun runs for people who want to move about on holidays. Our friend and my family were game. We completed a Family Mile. Our daughter received her first running certificate!
She was thrilled. I was beyond proud. Her attitude, running form, and pacing were flawless. For the first time, though, I wondered, “Boy, what if her heart suddenly gave out?”
So six months and many heart tests and visits to doctors later, our daughter and her parents braced themselves for what we knew we had to face sooner or later: the day a cardiologist, fortunately for us a caring, highly skilled doctor, would help close the PDA.
I could write at least five posts about our experiences this past week, but I’ll move toward closure. After several hours last Monday, the doctor approached my husband and me. During the procedure, which I will now forever call an operation, he determined that the opening in our daughter’s heart was too small for him to close.
To keep a long post short, only by conducting the operation could he safely determine her heart will be fine, that she can be active as she wishes, that she has the best chances in the world to continue to grow tall, strong, and smart, that we can start to exhale.
We’re relieved and still processing.
Do we celebrate? Yes, although we are all still exhausted and both my husband and daughter are now recovering from colds.
Do we rejoice? Yes, although we are still grappling with all the years bracing ourselves for a procedure or operation only to find out as it was being performed that it wasn’t necessary.
Do we embark on new beginnings? I strongly believe so.
For my poetry, I will attempt to compose a ballad, something I have never done in decades of writing poems.
For my bargains with the universe I made when I was praying for but could not be with my daughter for several hours last Monday, I will continue to try to be a better father, husband, brother, and friend.
For our daughter, I would like her to practice gratitude, to become a more disciplined student and independent person now that we know she has all the potential and strength to achieve those goals.
I can now look forward to completing my 25th marathon in late July.
But I needed after last Monday to let go of something — my fears, my overthinking, my vanity, my seeking reassurance from friends and the universe, my hair.
Yes, after all this seriousness, I have finally realized I’m better off when I keep life and my hair simple. Yesterday, my daughter and I went to a professional we have seen for five years. Just like the doctor, with great skill, love and patience she gave us what we needed: a new beginning!