This weekend has been incredible. Friday night we celebrated Isabelle receiving her Hebrew name of Yisraela Emunah with our families. Saturday we had fun watching Addie learn to swim and we had our first road trip of the summer going to the Little Hearts Picnic in Connecticut. This was out first time attending the picnic so we had no idea what to expect or even what to pack! It was very exciting for me to meet other parents and CHD families, but even more thrilling to meet fellow HLHS families and their remarkable children.
We met a young man who just graduated from BU, and who enjoyed a cold beer while laughing by the pool. When I asked about limitations he said he had more trouble with caffiene than alcohol! Another family I had connected on Facebook with arrived at the hotel shortly after us and we met at the pool. We met the founder of the group at a pizza place down the street from where we were staying. She told me about her teenage HLHSer and introduced us to her family. I loved every minute of it. Here was a group of people who lived with HLHS, had the surgeries and were enjoying life. I met a few more HLHS families at the pool and their amazing kids.
The pool was ridiculously crowded and we found ourselves dodging random elbows and feet trying to help Adeline and Isabelle play in the water. I loved that no one was staring at her PEG tube. No one was asking in a “whatthefuckisthat” voice “What is THAT?” when her tube would float out from her bathing suit. No one stared at her scar. No one asked me why she was so little for being 10 months. Everyone was too busy enjoying each others company and comparing stories of the year’s events. The kids were running circles around us, swimming and having a blast. The whole area filled with laughter and happy conversation.
When we got to the picnic we weren’t sure what to expect. People had told us about some of the activities but I wasn’t prepared for how well everything was organized. Forgive me, but I have done many road races and large events can be absolute chaos! We checked in, got our name tags and everyone knew we were newbies by the stars on our nametags. We had our picture taken and then went off to the designated HLHS meeting place. As I placed the diaper bag down to claim a picnic table in the name of France, I saw a robust young man talking with some of the parents I had met the night before. I later found out that this young man had HLHS, was born in 1988 and had his Norwood done by Dr. Norwood himself. He looked amazing. I could not believe that this guy had the same defect as Isabelle and if he didn’t have the nametag on I would have had no idea he had HLHS.
Speaking with the parents who had teen HLHSers gave me insight on how far medical practice dealing with this CHD has changed. None of these parents were sent home with a scale, binder or a pulse-ox machine. In fact, when I mentioned what our Interstage life was like, one father said to me “You had to weigh her every single day? We just had nurse come once a week- you must have gone crazy!” And while he was saying that I was thinking “Oh my God- you guys had nothing- that is crazy!”
And then it hit me. These parents didn’t let worry take over their lives. They weren’t driven mad by scales, weight gains or sat levels. Their children rode on rides in Disney, they let them play sports, they let them reach for the stars. They didn’t let their fears affect their children and I saw the results running around the pool with careless abandon. When I ran into a fellow Boston mom (and friend) at the picnic with her son who had his Fontan last summer, I relayed my experience while watching her son run around her in his excitement. It was 90 degrees and he was buzzing around like a blond bee on a mission. Another view on what our future could be like.
As I thought about the families who are having their Fontans this summer, I looked at the young adults in front of me full of promise. I wished other moms could see what I had seen today. Robust, healthy HLHS young adults enjoying life. Happy. With college degrees and plans for the future. We can have these things, this life without limits. Obviously, Isabelle will have certain limitations, but from what I saw- these kids didn’t appear to be held back by them.
Look, I know the surgeries our babies and children go through are terrifying. There will always be the underlying fear of losing our most precious ones. I am sure I will be wreck myself when the time comes. When it does, I want to pull a photo up of one of these amazing kids and breathe in a little hope.
Normally I would end here at that last statement but I saw something on one of the Heart Mamas pages that really got to me today.
Someone posted a nice thought about God and how her child’s heart was created by Him special, as if she were a high end car that needed a special part to make that automobile special. It was a nice train of thought about making sense of something that doesn’t. What I didn’t appreciate was someone’s comment on how most CHD kids are born into Christian families, because of this nice Creationism view on how a child received the CHD that they had. Do I need to start posting “Hey! There are some Jewish heart moms that love their children too!” Or shall I post “Yes, that’s right- Christians really are the only people compassionate enough to take care of special needs children. I have no idea what I am doing with mine.” It is infuriating to constantly feel that because you are not Christian, you don’t have the same appreciation for life that someone who is Christian would. Newsflash- IT’S NOT TRUE. Many people of various faiths care about human life. Get out of your narrow mind and try to think that perhaps you don’t sound loving when you tell people that you are so much better than everyone else. And what gets me is that this is on a Heart page. A page created to support other Heart moms, and I am getting told that because I don’t believe that Jesus was the son of God, I don’t have any sanctity for life. Awesome. It still won’t ruin the wonderful day I had with other people who appreciate life as much as I do.