Difficult Times

When a family loses a child I think to myself "how sad" but when a family loses a Child to CHD or Heterotaxy my heart breaks in half and I shed so many tears for the family while thinking "that could have been and still could be us".  Five years ago I never could have imagined crying for a child and family I have never met. But as you follow their journey you cry with them and celebrate with them as some of you have done for Molly.

About a year ago I completely removed myself from the Heterotaxy and CHD community for a few reasons but one of the biggest reasons was because the loss of so many kids took a toll on me. It became too much. I was sad all the time. I kept looking at Molly and wondering what was going on in that little body, always examining her lips, toes, fingers. Watching her breathing and obsessing about things I had learned stop monitoring on a daily basis. Once I removed myself from the community I had felt so much better but always felt bad for doing it because I wanted to give new families hope and share our story so that these families that were currently in the hospital wouldn't lose hope. Molly is our miracle and I wanted other families to know that miracles do happen. But I had to get back to baseline before I could do that again. I was enjoying Molly and stopped obsessing about her health...kinda. I was able to laugh and think. As time went on, Molly started school, we started our new normal, I felt good and felt like I wanted to get involved once again. My reason for getting involved was because I don't know where I belong. My friends that have kids can't relate and in turn I can't relate to their life. We try to give Molly a typical childhood but it will never be. We will always be nervous when she touches something in a public place, running to get Purell on her hands before she sticks them in her mouth. If she sniffles or coughs we immediately think "oh crap, here we go. I hope to God this doesn't lead to an admission". About 2 weeks ago Molly asked to go to bed. I brought her up to her bed and she was fussy and wanted go back down stairs which isn't her usual behavior. I sat her at the kitchen table, she coughed, gagged and did her throw up cry that I hadn't heard in over a year. I yelled to Jay to get a towel and we immediately panicked. If she was a typical kid...big deal if she throws up but to us it's a reminder that she has unrepaired, malrotated intestines and we would have to rush her to the ER. Even though she never threw up we slept horrible that night waiting to see what she was going to do. These are all things that no one can relate to unless you are the parent of a Heterotaxy child. So I decided to join the Heterotaxy Facebook group in hopes to connect to those moms because I felt lost and alone. I would give anything to have someone to talk to  that would know exactly how I feel.

Since becoming involved in this community again it has been tough. Over the last 2 weeks, 3 kids (on Heterotaxy kiddo & 2 CHD kiddos) have lost their lives to CHDs. When a little one loses their life to a CHD it hits our household hard. We are reminded that this is our reality. I look at Molly with tears in my eyes and become even more grateful that she is still with us. I'm not sure why we were lucky enough to bring her home from the hospital after all that she had been through and have her the healthiest she has ever been but I'm not questioning it. I am SO grateful to have her alive and well, entering her 2nd year of preschool and growing so much as a little girl both physically and mentally. She is my absolute favorite person and I would give anything to protect her as would any parent. I give her what she wants, do what she wants and soak up every second we have together because I feel guilty for what she has been through and what she will always go through. She goes to doctors appointments, therapy and blood draws without ever complaining. Sadly she is more comfortable at the doctors than she is at an amusement park. It is kind of  heart breaking but definitely makes life a tad easier.

To say I'm sad that Molly is starting school in one week is an understatement. I love having her around and I hate that this summer is coming to an end. I'm not ready to send her back to school but knowing she loves it...well, it doesn't make it any easier but she will have a great time and that is all that matters!!! She does have 3 appointments coming up...eyes, dental and cardiology. Three of the worst ones. I try not to think about it because I will drive myself nuts. I just can't wait for these to be over and put them behind us for another so many months!

I hope you all had a wonderful summer and I will update after her appointments. Please keep these families in your thoughts and prayers. They need them more now than ever before!

Kerry