The Club No One Ever Wants to Join

When we were first told of Isabelle’s diagnosis exactly two years this week, I was filled with many different emotions. Anger, sadness, fear, and grief. Grief for the joyous pregnancy that I enjoyed up until that moment. Anger over God ignoring my request to bless us with a healthy child. Sadness that we may give birth to a child we would lose. Fear of what this diagnosis meant for us and our family. Open heart surgeries. Percentage of outcomes. Outfits she may never wear. Toys she may never play with.

Two years ago my world was shattered with four letters. HLHS. Today, I am in such a different place I wouldn’t have believed it if you showed it to me. Today I view Isabelle as a blessing to our lives. She is doing so well you can barely see the evidence of her CHD. I speak a language I didn’t know existed. I can participate in discussions about my daughter’s care and be her advocate. I am not intimidated by the letters “d” and “r”.  I have friends that I have never met but would send encouragement and support across the miles when I need it. And I like to think I do the same for them. My days are filled with moments, instead of labels like ‘good’ or ‘bad’. The God I was so angry at is now the one I rely on to help me get through those moments of panic that can still strike without warning. I am at a point where I realize that losing that job I loved so much was truly a blessing that set me free from an unhealthy relationship.

My whole life I have always wanted to fit in. When I was young I wanted to fit in with my classmates and not be the unusual child I was. In high school I wanted the experience I saw my older sister having- lots of girlfriends, a boyfriend, a job and incredible wardrobe. In college, I wanted to be one of the hippies, the radio station crowd, and the fellow communication majors who seemed to have their shit together a whole heck of a lot more than me. I ended up joining a fellowship after one particular bad year and that was my first club membership that I wasn’t aiming for.

The day we were told our baby would need surgery in order to live, we were taken from a parenthood surrounded in normalcy, to another world we had no idea about. When another mother reached out to me at my workplace, I had tears running down my face because I had someone I could talk to about what we were about to face. Someone who knew what it was like to hand over a tiny baby to a surgeon and not know if  they would be able to hold them again. When Sisters by Heart sent us that care package full of things we would need in the hospital, my pregnancy went from dark to one full of hope. I was able to give her a name. I could daydream about first smiles, and little coos. Because of those connections, I was able to move forward and step into this new world of the Heart land.

I have had my struggles for sure. My life in the first unlikely fellowship I became part of taught me to reach out to people when I needed it. It also taught me the importance of passing on what was so freely given to me. Saturday I was given the gift of an extraordinary night out with my husband. We went to a fundraiser a fellow heart mom had put together to raise money for research on heart valves. In spite of the beautiful jeweled gown she wore and the glamourous atmosphere, she was so happy to see her fellow heart moms there to support her. As I sat listening to her speech sitting in between two incredible heart moms, I felt like I belonged. I fit in. I got my wish. It wasn’t how I wanted to come true, but what a blessing to finally have it. One of the emcees last night used the phrase “The club no one wanted to sign up for” to describe the Heart Land. Part of that is true. I wouldn’t have asked God to give me child whose future is uncertain regardless of percentages. But the tradeoff of being a part of a world that is full of such love and caring for one another is a blessing. We care about moments like when a surgeon has made the first incision, when the child has been put on ice, and when their heart starts beating on its own. We hold our breath alongside a family who could be miles away in another time zone. We get excited about first steps, ounces gained and first words.

Today we picked up a mom flying into Boston for the first time for a visit to Children’s with her little 20 month old girl. We went to Faneuil Hall and then met up with another mom whose son is in the CICU recovering from a very intense surgery to help make his heart more whole. Dinner at Bertucci’s with excellent company was a perfect way to end an incredible weekend. I am so grateful that in spite of those gut wrenching sobs that took place on that table two years ago, I can see the silver lining.

 

Picking up Sarah V and Miss Cecelia

Picking up Sarah V and Miss Cecelia

 

 

Good friends, food and family

Good friends, food and family

 

One thought on “The Club No One Ever Wants to Join

  1. Valeria Petracchi says:

    Hi, i loved your article. My son was also born with HLHS. He is 4 and we traveled from Chicago to Boston for all his surgeries. He is having some complications post Fontan that our local team is not able to manage so we madr the decision to relocate to boston for good. For my son. As you have said, everything else loses perspective when caring for a heart child. His fight is our fight and we want him to have the best trained team of doctors and nurses.
    I’d love to meet other fellow Moms in the Boston area. By the way, who was the fundraiser for? We met an amazing researcher at CHB who was working on that ( Dr Dario Fauza) and I always thought I’d like to help fundraise for this cause as it embraces our kids future. Hope to connect with you soon. Regards,
    Valeria

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