How Fast Does Your Heart Beat?
How fast does your heart beat? I can’t begin to explain how enormous that question is to me. The words “heart” and “beat” put together are so powerfully magnificent. Heartbeat- passion, vitality, warmth, health. I have been listening to heartbeats for the last six years religiously. The first time I really heard one that I paid attention to was during my first pregnancy with our now six-year-old boy.
I imagined motherhood to be this lovely journey full of monograms and Pottery Barn nursery decorations. I envisioned an altered vaccination schedule and never ever needing to pay for education. I imagined I would drive a beautiful enormous SUV and retain my rocking Pilates body for the long haul. And with one heartbeat everything changed.
Paul was diagnosed in utero with a condition called Hypoplastic Left Heart Syndrome- a disease where the left side of the heart does not develop correctly. I was told while pregnant that my baby would be born with half a heart.
He arrived and survived but not without significant complication. He had two surgeries before he was four months old and as a result did not get to develop in a way a baby should. He needed help to learn how to walk, to crawl, to speak, and to eat.
It was in his third year of life that in spite of their best efforts doctors from all over the world couldn’t save his beating half a heart. Paul was listed for transplant in October of 2014 and moved into the hospital to wait for a heart in December of that same year. The day before we moved in to Vanderbilt Children’s Hospital we celebrated Paul’s third birthday at High Hopes.
You see, since the beginning of this journey with Paul, High Hopes became our second home. Therapy happened here, friendship happened here, and community happened here. Some days High Hopes was the only place we went and the onl