This morning I sat in my daughter’s cardiologist’s office while he talked to me about what was wrong with her heart. My husband Ben joined us via Facetime and I held Ellie, who just wanted to hug. We were chest to chest, and I could feel her heart beating while the doctor pointed to the new challenges on his (most excellent) hand-drawn diagram of her heart.
Just an hour or so earlier, I had watched her heart beating and saw her lungs fill with air as I held her still for the EEG and EKG that would give us a peek at her fate. I noticed the scars on her tummy and wondered if they would fade in time for her most self-conscious pre-teen years or if she would even care.
As he was talking, I could hear her very quietly singing “Jingle Bells.” She smelled like the Teddy Grahams that one of the nurses had given her. “I am literally holding her heart next to mine while I learn that it beats like a time-bomb inside of her,” I thought.
But this is the hand she was dealt. We knew there would be surgeries and stress and that hers would be a tall hill to climb. Ben and I knew that we had signed up for this supporting role. “It’s not good, but it’s not tragic yet,” Ben said when he met me for a hug at our front door after her appointment.
Tragic has been our low-end measuring stick. We have been sad and even angry, but we haven’t had to do sorrow since she was born. If I am honest though, the thought of it is always nipping at our heels or lurking like a shadow around the corner. Going back inpatient at the hospital feels like we are flirting too close.
The more we get to know her and the more she becomes a part of the family, the harder it is to imagine our lives without her in it. We don’t like to go there, but I would be lying if I said that Ben and I don’t oftentimes sit up at night and have conversations that end with one of us saying a variation of “… I’d really miss her.”
Soon 2-year-old Ellie will have her third open heart surgery. This one will involve a lot of moving parts and even likely some new parts. We don’t know exactly what kind of surgery this one will be yet because there are a lot of questions around how her body will react, and we will be handing our baby over knowing that the surgeon will have to make game-day decisions without our input.
We are scared of what lies ahead and are nervous about the effect all of this will have on her life. The path that we wanted for her yesterday, we are learning, is likely not the path that was chosen for her.
But we do know that we are in the best hands. We know that the surgeon and the doctors will make the best decisions with the best information they have available. We also know that no matter what, our family is ready to do whatever it takes.
And the beat goes on. A wise man texted that to me a few weeks ago about a different topic, but it applies here. There is no choice, and we have no control. Nothing to do but keep her beat going on and on.
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Oh Heather I know this hard. Even though I have not met Ellie, I feel like I know her through your posts, photos and wonderful stories of your sweet family. Thank you for sharing her with us and know that we are ready to keep her beat going on and on. Love to you all.
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I wish you good luck with your daughter’s health. My sister had heart problems too, but they ended up healing themselves without surgery.
In case it helps to know, developmental delays also affect self-consciousness. Katie didn’t worry much about her appearance as a teen. She has a scar on her leg from a fall against a metal step, and I talked to her a few times over the years about her “cool scar.” Thus, she likes her scar. When Ellie gets older, you can tell her about her “cool scars” too and how they prove how tough she is.