In 2012, I became acquainted with the Schultz family through Mike’s blog ‘Echo of Hope’. The description of hospital life with a great sense of humor added in lifted my spirits during our hospitalizations. You can imagine how excited I was to see the Schultz name on my trip to the patient family kitchen. I introduced myself to a weirded out Mike, and mentioned how much I appreciated his writing. His posts gave a sense of validation to the crazy unpredictable life we were having. I wanted to thank him personally for lifting up my spirits. I also met Ari on that day.
For the past 4 years, I have been following their journey, praying for their journey to get easier like ours did. Isabelle had her last open heart surgery in the Fontan sequence and was doing very well. When we got home after 7 days inpatient, she instantly wanted to ride her bike. Congenital Heart Disease was not going to keep her down and she has been that way since. Her Dad and I are grateful that she has been able to grow and thrive in ways we could not have imagined.
We wish everyone could have this outcome like we have. But that isn’t reality unfortunately. Not everyone has the experiences we have had with her being so active, and staying out of the hospital with the exception of a dehydration episode. Every day, I thank God for blessing her with good function for that day. I am aware that things can change without warning.
When you have a child with a condition like Isabelle or Ari, you find yourself between having hope for the future, and keeping expectations in the day. When I start thinking about Izzie’s future, there is a voice that reminds me that moment may not come and to enjoy what is happening right now. I want to believe that she will grow up and follow her sisters’ paths through school and other life events. But that voice is still there, and whispers in my ear to hold on to what is happening now, for that future may not come to fruition.
I hate being dramatic like this, but in the wake of Ari’s unexpected passing I can’t help but feel an indescribable sorrow for Mike and Erica and all of their hopes for Ari. They had just started to let themselves think about the future, and the unexpected happens. Their son was given a second chance with a new heart, and that still wasn’t enough to save him. I hope people understand my frustration or response when I am asked “So if Izzie gets a transplant, she’ll be ok, right?”
No. She may not be okay. We will always have to be on our toes regardless of how pink her lips are at the moment. We will always have to stay vigilant, check her saturation levels and worry about how hydrated she is. We will always be cautious when talking about the future. I am even reluctant to talk about her 5th birthday, which is a huge milestone for HLHS kids because it means her survival rate improves dramatically. We aren’t there yet.
There is no finish line to this race, and we are forced to remember that every time we see another family struck by the merciless heart of CHDs. All we have is right now, and that needs to be enough.
Please remember the Schultz family as they walk through this immensely difficult time. I cannot imagine how awful this is for them and for their children.