Why is December 15 significant to us?
Ever since our daughter was born, I have seen moms sharing their child’s Heartiversary in our Down syndrome heart warrior support group. I often wondered why they would want to celebrate such a traumatic day.
I never planned on celebrating the day. I don’t celebrate her other surgery days. Then several weeks ago, in a quite time with The Lord, I asked him why would I want to celebrate such a traumatic day?! Surprisingly and almost instantly I felt the Holy Spirit respond, “to celebrate me and all that I have done!” Wow! I was knocked down a few inches. GOD HAS done so much in and through our daughter. She is a living, breathing, not-yet-walking miracle!
One year ago today our precious and extra lucky girl had life saving open heart surgery. I can vividly remember holding our daughter as we walked those brightly lit hallways going this way and that, until we arrived at the operating room. I remember trying to hold back the tears as we hugged and kissed our precious baby girl, hoping it would not be the last. The nurses and surgeon assuring us they would take good care of our precious girl as we handed her over to the anesthesiologist and watched him carry her into the operating room.
As a parent that was one of the hardest moments I have ever faced. We knew she needed this surgery in order to survive. However the thought of knowing that your baby is going to be put under anesthesia, have her chest cut open, her sternum sawed in half and her heart stopped and put on bypass in order to repair the heart defects, is a traumatic thought.
The trauma doesn’t stop there. Even though she was a baby, she knows, her body knows. She was taken by strangers, she had tubes and needles poked in her body, she felt sick, she vomited and she felt pain. Her recovery was great and also rough. Our daughter was discharged just 4 days after her open heart surgery. However we had to figure out how to manage her pain for weeks. Her incision struggled to heal as she is extremely sensitive and her body rejected some of the stitches leading to infection. For months and months she refused to be held chest to chest. She stopped all breast feeding after open heart surgery, and I still struggle with it to this day.
BUT our little girl blossomed almost immediately after open heart surgery. She started hitting milestone after milestone and her personality really started to show. She began sitting up, scooting, crawling and getting into all kinds of trouble! (She is a Boyer!) She is so brave and so strong and she is a warrior, our beautiful extra lucky heart warrior.
We thank God for blessing our family with our extra lucky girl! We thank God for helping her make it through multiple surgeries and numerous procedures! We thank God for her ability to eat orally and ditch the g-tube! We thank God for the progress that she has made! We thank God for the life He has breathed into her!
Wither you choose to celebrate days like this or not, we choose to celebrate our daughter each and every day. Her strength and determination along with her precious smile and giggles make us all want to squeeze her and kiss her constantly. She is our precious and extra lucky child, and she is dearly loved!
Religion that God our Father accepts as pure and faultless is this: to look after orphans and widows in their distress and to keep oneself from being polluted by the world. – James 1:27 NIV