What is CHD? We can get literal, of course. It’s Congenital Heart DEFECT, I still hate that word. Still being reminded of “IMPERFECTIONS” or “SHORTCOMINGS” that our son has. CHD has different types of defects that affect each baby/child differently. Ebstein’s anomaly is the main one for Ryker, as there were many defects in his heart, but it is also common to have multiple. But those literal meanings, that’s only part of what CHD is to us. A lot of what it is for us as a family is doctor visits, of course. Three open heart surgeries in the short time our guy has been on earth with us. Three major surgeries before the age of 4. Each valve failing like the one before. One thing we have learned about the heart, which put into perspective just how strong these tiny humans are…. is that the heart is a muscle (most know this), but like a muscle that you pull in your leg or back, you get to REST this muscle and let it “heal”. The heart doesn’t get to rest so it can heal, it has to pick up where it left off and keep going. It gets right back to pumping to keep our bodies alive. That is CHD. CHD is never finding a cure. It’s forever wondering about your future as a family and if we’ll make it to the next holiday season, or birthday. CHD is fighting for a little voice who can’t use theirs yet and you’re praying it’s the right words. CHD is seeing Ryker run around and keeping up with Sylas and forgetting he’s sick, only to be reminded every 4 months at doctor visits that we’re lucky he’s here running around with us, let alone the fact that he can even keep up with his brother. Reminding us again that our future with him is uncertain. YOU would think we’d be use to that. YOU would also think each surgery would get easier, because we’ve been through it a few times. Honestly, it stings worse each time and only gets harder.
Naive of us to think that having a sick child would ever get “easier” or that it just becomes your new “normal”? Even with all these heavy feelings on the heart that used to make me LITERALLY cry every day. I still remember the first day I didn’t cry, I thought that I broke my tear ducts! kidding. But I had a family member tell me about this movie, ARRIVAL. I still haven’t seen it (mostly because I can’t bring myself to). But, I made her give me every detail. MAYBE A SPOILER ALERT IF YOU HAVEN’T SEEN. So ultimately the gist is – if you knew your future how would you live your life? And we went in knowing our future with ninny was never permanent. So it was in that moment of clarity, maybe? I’m not sure if clarity is the right word. But I suddenly realized it wasn’t healthy for any of us for mom to cry every day, and that wasn’t how I wanted to remember life with my kids. It healed a part of me, a silly movie I haven’t even seen. I feel like we’re always healing from the latest news that we get of Ryker and everything else life has to offer. But we have some other healers we’d like to share (because like I said we’re constantly healing). We have a house DJ, and his name is DJ dad; aka Brigs. He’s CONSTANTLY listening to music. He literally cannot do anything without music playing. Our house is always jamming… MUSIC became a solace for us as family.
“MUSIC gives a soul to the universe, wings to the mind, flight to the imagination and life to everything.” – PLATO. I love this quote. It perfectly fits our home.
Sy sings off key to all the lyrics he’s worked hard to memorize, and Ryker feels the music in his soul man, with every beat… He dances and is a mini Brig requesting music the moment he wakes up. I once read this about music; your heartbeat mimics the music you’re listening too… The way my family feels music, that little saying (or fact) SCREAMED at us. We live through each beat and lyric. It helps us survive those sad days, and lifts us up when we hear that perfectly happy tune that you just can’t help but shake your booty too. Music saved us. Not just music either, but art. From people water colorings of an anatomical heart because they too are affected by CHD, or photographs that help tell your story. LIKE THESE ONES from Ryker’s latest surgery and the days leading up to it;
They’ve helped us heal. Friends staying in the grit of the hospital and offering those 4 am hand holds of comfort, and letting you get sleep. Family members taking care of us and Sy while we endure another surgery. You have helped us heal. OTHERS dealing with a similar life to us, just by sharing their stories, helps us heal.
I have been struggling for a year to share this post with the internet, but it’s February and this month is all about hearts, love for most, but hearts for us, and the little community we share as parents, siblings and all the others fighting CHD. But we are where we are with Ryker from people sharing their story with us. Showing us that we are Ryker’s voice. We were told to ask questions… so that we did. We met Ryker’s surgeon while pregnant with him, and also met with other surgeons. BUT no other compared to this man’s calming presence mixed with humbleness and humility. He was serious and answered every one of our questions whether silly or serious, he thought long and hard about how he answered where other surgeons laughed at even a simple question of how long have you been a surgeon. OUR questions held no validation and we were laughed at by these other surgeons…imagine the amount of discomfort we felt, and you want us to allow you to operate on our son? We were somehow the crazy ones.
You are someones voice… and decision maker. Question everything… from procedure details, to medications, to why you’re child needs to be poked again within an hour for another blood draw. BEING a little human’s advocate is scary, we sometimes have trouble being our own advocates. So here I am telling you not to be! Even if you don’t have a sick kid, you’re still their voice. So I wanted to use our little voice sharing everything CHD is to our family, in hopes that we reach that one person to let them know they’re not alone. Being a part of this community and realizing that heart disease is the number one killer in adults, but CHD is the number one killer for babies and children. So I constantly ask myself, HOW is there nothing for babies yet… even medications have to be compounded from a pill and turned into a liquid for my kid. SO MUCH FAITH IN A HUMAN TO “CREATE” a solution for him, because blood pressure medications are for adults, not a 12 day old baby or a 4 year old child. The truth is there is no “MARKET” for baby valves or children heart medications. THERE ISN’T A MARKET FOR IT. How can we be such a small percentage of people but the number one killer? Not saying my small voice will make a difference but share our story, or help us create that market?? I don’t know – but just to get these words seen, BECAUSE CHD has no cure… only options. And are you making the right one? Be a voice for a family member, friend and stranger. Brig and I have been scouring the internet for answers and solutions for Ryker, and parents who don’t mind sharing their similar experiences, have helped us find some… I only hope we can offer the same to some one else as we share what CHD is…
SPECIAL THANKS : Kelle Ramsey for taking these photos and telling our story with them.