The moment you take when you have to catch your breath…

Last night after dinner, Izzie and her dad were sitting on the couch having an ice pop. Addie’s latest obsession is NCIS, which was playing on the TV. After a few minutes, Izzie looks up at her dad and says “I wish I had a whole heart like the rest of you.” Chris was stunned and tried to see what caused her to say that. She said nothing else and went back to eating her dessert.

He told me about the exchange when he got back from the store. I had come by to put the girls to bed after my yoga class which gave him the opportunity to run out. Neither one of us knew what we could say to her to make her feel better. In all honesty, what can we say? The fact is she has one and a half atria, reconstructed aortic arch, and a single ventricle keeping her alive. The other side will never grow, a left ventricle will not magically appear. I am not looking forward to when she starts learning about the human body and realizes exactly how different hers is from her classmates.

It was inevitable that sooner or later, Isabelle would learn that she was different. We knew this. We thought we were prepared for it but last night shows me that we are definitely not. I don’t want to tell this sweet girl that she will never be fast, she will never be able to keep up with her sister, and that someday her heart will give out. I don’t want to have to tell her that someday she will wait for another to die so she could have a new heart because hers will fail.

Chris doesn’t want her to feel like we don’t love her how she is, so he feels like he can’t acknowledge that we also wish she had a whole heart too. We do wish she had a whole heart. He felt, and I agree, that she needed to hear that we loved her even with half a heart, and that we always will. It must have satisfied the inquiry since she didn’t mention it again.

After he told me the story, I sat on the couch struggling to catch my breath. That moment reminded me of the day after we found out there was something wrong with her heart. I woke up wishing it was all a nightmare that I could wake up from. I wanted the day to be like the one before, starting with great hope and joy. We went to Boston Children’s that day and met Dr. Levine who would tell me that my baby would need three open heart surgeries and that she had a 80% chance of surviving.

I remember asking her is she felt that it was worth it. I remember asking what if we did all of this, and it still failed. I wondered if I could do this to an infant – our child. I still can remember her expression as she said to me “You are asking me if it is worth it to have your child. I cannot answer that questions. Only you can make that decision.”

We did go through with the sequence, the doctor’s visits, the tests, the x-rays, the blood draws, the various studies. We watched her literally fight her way to existence, and then cheered her on as she began to thrive. It was not easy going through the feeding struggles, the worrying about being around other children who could get her sick, her color changes that were so alarming in the beginning. Her growing fear of the doctor’s office contributed to our burden and we would have to mentally prepare for her screams before every IV, every blood draw.

Izzie is becoming more aware that she has half of a heart. It is devastating to watch,  but wow- the strength it took for her to get to this moment is something we will never have. She truly enjoys every day to the fullest and has taught us to do the same. Every day is a gift that we are so grateful for. And I mean we- myself, her dad, her sisters Addie and Liz, my partner Melissa, her grandparents, aunts, uncles, cousins….the list of people she has impacted is endless. We are so blessed to have her smile, giggles, and hugs as part of our daily life. If anything, that is what I want her to be sure of. That no matter what she will have to go through in the future, she will be surrounded by all of us. Half a heart and all.

I’ll keep writing about this as more is revealed as she becomes more aware. It’s worth archiving in case other families run into this same issue. I’m sure they have, and more will join us in this part of the journey as our children grow up.

Please consider donating to our Team Izzie’s Hope for the Walk for Boston Children’s Hospital. They are working very hard on finding a solution for kids like her and they are the reason why she is thriving today. Without the care she received from before she was born, I know we would not be where we are now. Thank you! 

 

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