The Life of a CHD/Heterotaxy Parent...

As I wake up this morning the first thought that pops in my mind is "I hope the Warner's are feeling a little bit better today as yesterday was probably the hardest day of their life". Then I scroll through my Facebook page to see more than half of my "friends" with the same face as their profile picture, the face of little Ryker with heart felt condolences.

As a heart parent you connect with each other on an unexplainable level. Though you've never met you feel deeply for the parent that loses their child, roots them on when they are in for surgery, hoping with all that you have that they pull through and make it just one more night. You check Facebook 1000 times a day to make sure that baby is still alive. On days that they are having a tough time you send a simple " <3" to the parent so they know you are thinking about them, on days that they are in surgery you ask for prayers for this little baby that you have never met but love almost as much as you love your own. When you see a picture that is posted by a heart parent you aren't looking at what the kid is doing or what they are wearing but the color of their lips and fingers. If there is an O2 monitor, you notice the numbers. Your entire way of thinking is completely different. If I see a picture of a heart healthy baby, it's so odd to me that they don't have a scar down the middle of their chest. It just doesn't seem normal to me anymore.

Last night I learned of the loss of Ryker Warner. Ryker turned one in March and spent a year in the hospital...at Boston Children's Hospital. He received great care while he was there and went through so much in his short life. His parents fought for him like no other parent I know. I am saddened by the loss of each child but Ryker was a little different. I had the pleasure of meeting his mom one day. She is amazing...beautiful, devoted, caring and loving. She always had great things to say about Molly and how Molly inspired her. She never gave up hope. She fought until the very end. I know I will probably never see her again but I hope that I am able to be a part of her life in some way.

Over the past three years I have heard "what you do for Molly is amazing", "she wouldn't be where she is if it wasn't for the two of you", "I don't know how you do it". I know those things are all meant to be nice things and I appreciate it but I honestly believe that we don't do anything extra. We don't do what any other parent wouldn't do for their child...or at least I like to hope that's true. What we do for Molly is be a parent to her. We are raising her like anyone would. We just have to take extra steps to make sure she remains healthy. Yes, we always live with a fear of the unknown for her future but we don't let it consume us. We allow ourselves to live and make future plans. Would we have done that 2 years ago? Probably not. But it gets a little easier as time goes on. "She wouldn't be here if it wasn't for you" ~ the truth is, she wouldn't be here today if it wasn't for Boston Children's Hospital. There is a reason why they are #1 in cardiology and cardiac surgery. She is the reason why. They are one of only a  few hospitals that has as much experience as they do with Heterotaxy patients. What makes Heterotaxy patients so different and difficult to care for? They each have a unique anatomy and no two patients are the same. You may come across another child that is similar to yours but never the same and that's what makes each one so special. "I don't know how you do it" ~ this statement probably drives me crazy more than anything. It makes it sound like Molly is work and she's not. She's our life. I'm not saying that working full time and going to the hospital every day wasn't hard because it was. It was exhausting and emotionally draining but we just went through the motions and did it because we love her more than anything else. Three years later here we are. That initial hospital stay is a distant memory, but one I will cherish and never forget. A lot of good came out of that admission. We have met a lot of great people, we know how wonderful that hospital is and we have a happy & healthy little (almost)3 year old. We are like every other family, we just do things a little different. Instead of taking Molly to gymnastics, preschool and dance class, we go to Early Intervention, doctors appointments and visit the CICU when we are there. As much as I complain about EI we do these things because it's where we feel comfortable and accepted.

You may ask yourself "why do they continue to follow these kids if it's never a happy ending?". That isn't true. They are not all sad endings. When we were in the hospital our focus was on Molly. It wasn't until month 7, as we were getting ready for discharge, that we started talking to another mom who had been there a little longer than we had. When we got home I was put in touch with another Heterotaxy mom, from there I joined groups on Facebook...heart mom pages, Children's Hospital support group, a bunch of pages of sick kids. I was warned by a friend not to do it because it was going to become too much but I didn't listen and thought I could handle it. Afterall, Molly was doing well and these people understood me, felt what I felt. But as time went on and more kids started losing their battle it became more difficult to function in every day life. Some kids were still struggling every day, whether they were at home or in the hospital. I started comparing Molly to these kids and it was driving me nuts. I couldn't do it anymore. I deleted the pages, stopped following some but continued on with a few that I had learned to love. Unfortunately most of them have not ended well but I can't do it anymore. That doesn't mean I don't think about these kids or families but for my sanity & Molly's sake I can't do it. I know that we are so fortunate that Molly has made it this far and is doing as well as she is. We don't take one second for granted and I hope no one else will either. Enjoy and love your kids because some where, probably not very far from you, a parent has lost theirs and would do anything to have them back, just for a minute.

So this isn't completely depressing, Molly will be three one week from today and we can't wait to celebrate not only her life but the life of all of her Heterotaxy buddies both past and present.

Much love,
Kerry