Extraordinary measures for an Extraordinary Life

It takes a certain type of woman to make a heart mom. It doesn’t always come naturally. Some slowly evolve into the advocates their child needs while others jump in with both feet. Some have a hard time accepting that their lives have changed while others seem to go with the flow because…well…what else are you going to do?

I am a combination of a few of these characteristics. In the beginning I had a very hard time accepting that our child was not going to be the healthy one I asked for. The next stage for me was an insatiable desire to learn everything I could about congenital heart diseases, hypoplastic left heart syndrome, and surgical options. I became connected to other moms and learned what questions to ask, what surgeons to ask for and what to bring to the hospital.

Chris and I have always been vigilant with Isabelle’s care. During interstate we were inpatient at least 7 times and tried our best to give her the best chance. I was a total bitch when I had to be and sometimes when I didn’t have to be. I have her cardiologist on my ‘favorites’ phone list. Her surgeon is on my email contacts list. He responds within a few days to my inquiries. Her pediatrician is open with communicating to her team her and has always made sure she was on the same page as Boston. Extraordinary.

There are some downsides however to being a heart mom. You become a germaphobe in a way that is hard to justify to others. Viruses that send children to the ER are your worst nightmare. Tonight a little girl was in the family waiting area on the Cardiac Intensive Care Unit with a wet cough. I stood at one of the tables horrified that her family member had her there. She then went over to the water fountain and put her unwashed hands all over the ice machine and water dispenser. All over it. Fuming, I went to the front desk and asked what to do about another family being sick in the area. The admin wasn’t happy and sent a cleaning crew to the family room. Tonight we went to have pizza in the family room and the child was still there. Needless to say we ate somewhere else.

You have to be prepared to see your child in the most helpless state possible. You have to prepare to see them hooked up to machines, see their blood run through tubes that painfully exit their bodies and let other people poke and prod them. People tell me how strong I am because of what we have gone through. I’m not sure if it’s strength or plain shock at the sight of seeing your sweet child in pain and not being able to do a damn thing to comfort them.

But the worst moments are the ones where you feel like grabbing the tubes and taking them out yourself. The moments when your two year old looks at you with pain in their eyes, silently screaming. The ones when every fiber of your being wants to pick that child up and soothe them but you can’t. All you can do is sing softly to them, rub their heads, hold their hands and keep your eyes locked onto theirs as if you were holding them with your gaze. Those moments are the ones that separate us heart parents from the rest of the world.

Please don’t complain or stress to me about your child’s shots. Be grateful that is all they need to have. Please don’t complain about having to keep your child home from school because of a minor cold. It’s not minor to us. Please don’t assume we ingested something so horribly wrong out children were formed this way- as if we heart moms are responsible for our children’s suffering. And if you do have the good fortune of a mistake on an echo meaning your child doesn’t have HLHS, don’t go on an HLHS page and say that God was on your side. I guess He wasn’t on ours then? To all of us who prayed for healthy children comments like that are a slap in the face.

No one wants to be a heart mom or dad but I am convinced that some people are just not cut out for it. We are extraordinary people who are willing to go to any lengths to get the best care for our children. We do the footwork to have them transferred even though it is very overwhelming to move to a city you have never been to or get the paper work lined up to make it happen. We research the various medical centers to see what the outcomes are, and if the center doesn’t comply, we demand transparency to make informed decisions for our children. We take matters into our own hands and drive to another hospital hundreds of miles away with oxygen so that child could have a chance instead of hospice. We hand our children over to doctors with the possibility they may not return to us or that we may never feel their kisses on our faces.

This is what my life has become and here we are at the last stage of her repair. I am very grateful for the support I have received from fellow mamas here, across the country and around the world who have sent prayers and words of encouragement. We get excited as a community when our children do well, and we cry together when they don’t. We band together when someone wants to transfer their child to a different center and do what we can to make their journey a little easier. We sell t shirts for each other’s children to help raise funds for our friends so they can have one less thing to worry about.

This was not a club I wanted to join but I am sure glad I made it in. Membership is a heavy price but I didn’t have a choice on paying it.

Izzie is doing well tonight. She is breaking a little more comfortably and we should be on the floor tomorrow. I am so proud of how much she has been able to get through!

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