Continuing our month long celebration of mothers, Jessica Chenevert, who is an advocate, committee member, and Social Media Coordinator for the Conquering CHD, shares how CHD has shaped her perspective on motherhood.
There’s changing table stocked with diapers, wipes, and creams. The book shelf is packed and the stuffed animals are all in a row. The blue blanket hangs over the rocking chair. Picture frames waiting on stand-by to be filled with that precious face you are so eager to see. I’ve spent months decorating the nursery, making sure everything coordinates, and I’m as ready as I will ever be. I just want to meet the little man that has been swinging off of my rib cage for the last few months. Will he have my eyes? Will he have his daddy’s smile? I hope he is tall, smart, athletic, kind, and open minded.
As a first time expectant mom, my ideas of what motherhood would be like were nothing out of the ordinary. I was a healthy, active 25 year old excited to be a mom. My pregnancy was fairly typical with highs and lows, and everything was on track to have a healthy baby boy.
Or so I thought.
Barrett arrived and it was just like everyone told me it would be. It’s magical, unmatchable, and you are overwhelmed with loving someone so completely. I made this? He was perfect and I was in so much love.
Our joy quickly turned to fear when after 20 hours of getting to know our son, we were told that he had developed cyanosis (his skin turned blue) and his pulse was dangerously low. He was prepped to be life-flighted down to Minneapolis Children’s Hospital where he would be diagnosed with Transposition of the Great Arteries (TGA), which is a reversal in the position of the two main arteries (the aorta and the pulmonary) which changes the way his blood circulates through the body, leaving a shortage of oxygen rich blood flowing from the heart to the rest of his body.
I had been a mom less than 24 hours. My life was not only changing big time by having a baby but now it was possible I would lose him one day into the job. Was this really happening?
Barrett went on to have an arterial switch operation at 2 days old that he sailed through with flying colors. Then, at 13 days old, he went on to have a coarctation repair operation. 4 days later and we were getting in the car for a 5 hour car ride home.
Did that really all happen in 19 days?! This is not what I expected being a new mom would be like. What now? As I wondered what my next step as a mother to this little boy should be, I spent time getting to know him, wire and tube free, and establishing a routine for feeding, sleeping, and meds.
There are challenges we face every day, both of the typical toddler variety and the toddler with a lifelong disease variety, and through it all I have learned a lot more from my 21 month old than he has from me. Watching him overcome, battle, and grow through his disease has inspired me, empowered me, and enabled me to continue to change my perspective of motherhood and what it means to me as if it were a living breathing thing on its own.
Did I expect motherhood to provide me with daily challenges? Yes! Did I expect motherhood to throw me a curveball on day 1? No, no I did not. All you want as a mother is to have your child safe, happy, and healthy. As the mom of a child diagnosed with CHD, you have to come to terms with the fact that you can keep him as safe as you can, you can love him so he is the happiest kid on earth, but you can’t fix his broken heart and there is an uncertain future that you have to come to terms with.
So, on one hand, Barrett’s life with CHD has changed my perspective on motherhood immensely just based on the fact that I didn’t see CHD coming. On the other hand, it has not changed it at all because the day I became a mom is the same day I became a heart mom. I know no other way to be a mom. I am Barrett’s Mom and he is without a doubt the best thing that ever happened to me. He makes me strong, he makes me brave, and he inspires me to fight alongside him.
My heart warrior has taught me that life happens in an instant, anything can happen at any time, and I need to stop feeling guilty about not being able to control that part. I can control my impact on CHD and if you know me, you’d know that CHD should be a little scared. I am one of those feisty, smart-mouthed, short Swedes that frankly just looks terrifying coming at you with mom bun hair, beady little enraged eyes, and the smooth stride of a velociraptor.
I’ve never been good at just being a participant. I like to be armed with information, as involved as I can, and be someone that others look to for whatever they need. I joined CCHD by deciding to fly solo to DC for the Congenital Heart Legislative Conference, and share our story with Members of Congress. I wanted to make a difference for Barrett’s future, connect with a community who gets it, and to fuel this newly found passion that my hero showed me the way to. It worked. I am hooked. If Barrett is going to battle CHD his entire life, well then I am too.
Jess lives up the North Shore of Minnesota with her husband Nolan and their son Barrett “Bear” and their dog Bailey. Barrett was born with Transposition of the Great Arteries & Coarctation of the Aorta. With a background in several aspects of the medical field Jess. Joined CCHD shortly after Barrett’s Birth and subsequent diagnosis. Now a stay at home heart mom she strives to be an active volunteer as an advocate, committee member, and Social Media Coordinator for CCHD.