I’m guessing yes. Everyday for the last 6 ½ years I have too. I have wished for a cure for my son’s heart disease.
I will never forget the day that we received a large envelope from Make-A-Wish Iowa. I quickly read through everything. I was excited to share the great news with Jax that he was getting a wish. I could not wait to see what he would wish for. Make-A-Wish tells you to have fun and enjoy the process…have your child dream big….for ANYTHING. So that is what we did, we said to Jax, “if you could wish for anything in the world what would you want?”.
I watched him silently start thinking about it. Almost instantly he looks at us with a sparkle in his eye and says, “Oh, I know. I have the perfect wish.” I couldn’t wait to hear. Then it comes.
“I’m going to wish for a small heart.”
Of course, all he really wants is a cure too. As I fought back tears I told him that would be my wish too but that’s not how it works. Make-A-Wish cannot heal your heart.
Jax was 10 lbs 2 oz at birth. That is a BIG baby. What we would soon find out was that he had a big heart too. He spent 12 days in neonatal intensive care unit (NICU). No one ever thinks they will be in the NICU with a full term baby and one that is so big. He looked like a toddler there. No one wants to be in the NICU but for us it ended up being a blessing. We might not have found out about his heart until it was too late.
Jax was very sick. He had a broken clavicle. He was treated for pneumonia. His echo showed a thick heart muscle and at the time that seemed to be the least of our worries. Jax’s echo also showed persistent pulmonary hypertension of the newborn which is defined as the failure of the normal circulatory transition that occurs after birth. The doctors told me to not even look it up. They were right. It was scary but he made it through.
At the follow up cardiology appointment they went ahead and fully diagnosed him with hypertrophic cardiomyopathy (HCM). There is no surgical treatment or cure that can repair the damaged heart or the stop the progression of the disease. Cardiomyopathy is the top reason for heart transplants in children. It puts Jax at a higher risk for sudden cardiac arrest. So everyday we give him his beta blocker to slow his heart down so it does not have to work as hard and we pray.
We pray his heart does not stop.
It is not easy. It is a constant feeling of waiting for the bomb to go off inside his precious little body. Living with HCM hasn’t become easier for us. If anything, it is harder now. It used to be hard to wake my sleeping baby up to give him his medicine in the middle of the night. It used to be hard to watch him cry as they took him away from me at each appointment to get his chest x-rays done. It used to be hard to keep him from pulling the wires off when he had to wear a holter monitor. We still do these things but they are our normal. Now it is hard to answer the questions Jax asks us. He is beginning to understand his diagnosis. So he is asking the questions that we have been asking since he was born. “Why was I born with a big heart?” But the hardest one yet. “What happens when my heart stops?”
Questions no six year old should have to ask.
After we fought back tears when he wanted to wish for a small heart, the wish process and wish experience has been more than we could have ever dreamed. He wished for a backyard putting green and sandtrap. It is perfect. He now has a safe option to play outside.
I think maybe I was wrong when I told Jax that Make-A-Wish couldn’t heal his heart. Because in their own way I believe they did heal Jax’s heart. I know they helped healed his mom’s heart. For that I am forever grateful.
As you consider a gift to Make-A-Wish Iowa I want you to know that it is more than a wish you are granting with them.
It is peace. It is joy. It is love. It is strength. It is HEALING.