CHD Awareness Week 2018: Painfully Aware

For the past six seven years I've always celebrated, or at least tried to participate in someway, in Congenital Heart Disease Awareness Week. It's every year February 7th through February 14th. It's a week to try to raise awareness of how prevalent CHD is in our country and around the world. It's a week to try to raise money for all the research going on to try to better the lives of the many people affected by CHD. It's also a week for CHD survivors to take pride in all they've been through, to rock their scar, to tell their stories, and to try to make everyone with CHD realize they are not alone.



This year CHD Awareness week happen to fall days after Zane's cardiology appointment. We had just been jarred back in to the actual reality of Zane's diagnosis. Yes, we knew all the information that we were given, we knew all these things would happen eventually, we just weren't expecting eventually to come this soon.


So after spending a few days trying to grapple with this new information, and wrap our heads around it all, I headed back to work on Wednesday. I had kind of forgotten it was CHD Awareness week, possibly blocked it out, until I walked into the children hospital and was bombarded with ALL the CHD awareness facts from ALL the people. Pamphlets, posters, cookies, cupcakes, random people telling me the life long effects of CHD on children. At some point a manager, or someone came around, spewing facts and figures, and she said "Did you know that the children we treat who have CHD will need life long medical care and will often need multiple open heart surgeries throughout their life." I looked at her and just said, "I'm PAINFULLY aware of that fact." Then I asked where I could get here cool heart shaped, 1:100 CHD Awareness button. She told me they were for heart nurses, "are you a heart nurse?" "No I'm a heart mom!" She had the perfect response of taking off her button and giving it to me on the spot. I spent the rest of that day avoiding the CHD Awareness activities and asking friends to google recovery time after pediatric valve replacements. NEVER GOOGLE IT!



After the difficult day at work on Wednesday I started Thursday be finding a letter we'd gotten in the mail saying we needed to call to schedule Zane's MRI. This shook me a bit because the last time Zane had an MRI it was ordered in February and we didn't hear anything about it until July. I called and checked on getting it scheduled multiple time, but they said they couldn't get us in any quicker. Well, turns out you can get in quicker if it's needed, if there is a real concern. Turns out you can get in the next month. I called and scheduled his next MRI for the end of March. This pulled me back out of the state of denial I had desperately tried to get back into, since we surely had a few month before anything happened. Thursday evening when Zane got home from school I had to break this news to him. He was upset and said he just had one, why does he need another one already. I had previously promised him he wouldn't have another one for a year. The process of explaining everything to him difficult since he has no idea what to expect and is trying hard to stay in a state of denial as well.


Thursday night Zach and I discussed our new state of constantly being in a daze, not quite sure what we are supposed to be doing, but finding ourselves distracted and me personally randomly crying all the time. I know this feeling well, but when Zane was a baby I didn't have other children to take care of, I just sat in this daze. It's proving difficult to pull out of it and function as a human. I went to sleep Thursday determined to get through Friday without crying and try to pull up, all the hard stuff had happened what could possibly push me over the edge now.


Well let me tell you, there are things everywhere that can push me over the edge. Friday's fun reminder of my painful awareness about CHD came home in Zane's backpack. He was very excited to tell me that they had started Jump for Heart at his school and he finally had all the paperwork. We did this last year, I don't remember the paper making me cry, it was fine, but I feel like last year it was more generally directed at heart disease as a whole not specifically children with "hearts that don't work quite right." After my initial glance at the pamphlet I was annoyed that their heart hero only has to have one heart surgery, just jealous that's all. However, when I took a closer look, read the form, and the pre-set emails you can send out is when it pushed me over the edge. It's all written in first person, "I'm raising money for kids who have hearts that don't work quite right ect." All written in first person of child whose heart works right. This seems just brutally unfair to me, to assume all the children sending the emails would obviously have a heart that works perfectly when in reality one in one hundred kiddos doing jump for heart have a heart defect of some kind. Cue me crying, Zane asking me not to talk about it anymore, me taking a shower, crying more, then pulling myself together, and editing his email to tell his story of being one of the many children whose heart doesn't work right, but that he's a warrior and so we Jump for Heart. Just an unfair, heartbreaking, unnecessary added stress to this week. All this followed by every single commercial break during the opening ceremonies starting off with a heart disease commercial. AWESOME!




All this to say there has never been another week, possibly in my whole life, where I have been so painfully aware of CHD. I've never been more aware of the life long journey heart warriors will go on. I legitimately had never thought about all of the surgeries Zane will have to have in the future. I have never been so painfully aware of all the possible complications from multiple open heart surgeries or trips to the cath lab. I've never noticed how all the facts being thrown out this week could seriously push heart families over the edge and into a PTSD breakdown. I'm also more aware about stupid things I never knew I would have to worry about such as Zane falling down post op and re-injuring his incision or his baby brothers jumping on him. I'm now aware of things I never knew I should be worried about as a heart mom. Mission accomplished CHD Awareness week. Now for what I usually post during CHD awareness week, Zane's Rock Your Scar pictures for the Mended Little Hearts CHD Awareness campaign.


Zane's Rock Your Scar pictures were some of my favorites this year. They were taken before his appointment, when his diagnosis and story were still something that we were just so proud of not something we were once again fearing. Zane remains such an absolute light in this world. He is loving and kind. He's the best big brother a boy could ask for. He is brave beyond measure, full of live and energy. It's unfathomable that this kid will face multiple heart surgeries in his future. But if I know one thing for sure this kid is a fighter and he will come through it all will grace, pride, and fearless strength. The world is simply a better place because this sweet boy is in it.