Rachel Nielsen - Four Things to Look Forward to On Your CHD Journey
Rachel is a Heart Mom who lives in Utah with her husband, three-year-old son, and one-year-old heart warrior. She loves writing, being outside, playing hide and seek with her babies, and secretly eating chocolate in the pantry while the kids aren’t looking.
I remember every detail of the day we found out our baby had severe congenital heart disease. It was snowing. My morning sickness was in full swing. I threw up red Gatorade in the hospital bathroom between appointments. My toddler watched about three thousand episodes of Barney while he sat on my husband’s lap during my ultrasounds. And it was garbage day.
And that’s how they say it goes, right? The most emotionally taxing days of our lives are the ones we remember so vividly. And for me, this was the most emotionally taxing day of all.
Looking back at that snowy November day from where I stand now with the sweetest 11-month-old baby I know, I see myself and my breaking heart in that sterile hospital room and wish I could tell that young mom that this journey will be hard, harder than anything she’s done before, but, it will also come with the most remarkable and awe-inspiring experiences and interactions she can’t find anywhere else. The hard and the beautiful all tied up together in one life-changing event.
If you’re here reading this, I’m sure you’ve had those hard days too. My heart aches for you. But through it all, I hope you can also look forward to a few things, a few silver linings if you will. Here are just four to get you started.
A Community of Love
CHD affects 1 in 100 babies. So other parents have done this incredibly hard thing before, and because of this, many of them have the perfect support and perspective to offer. When we found out about our sweet baby, the cardiologist connected us with a group of other parents in our area who are also facing CHD. These parents have answered so many of my questions and offered such great hope in ways no one else can—because they’ve done it before. We meet up occasionally to participate in fun runs, raise money, and discuss feeding tube supplies. I’m lucky to know them. Regardless of where you live, you can also ask questions to and hear stories from CHD families around the world at supportnetwork.heart.org.
A Team of Caring Medical Professionals
Our list of people to send Christmas cards to last year doubled because of all the brilliant and caring doctors and nurses we’ve had the privilege to meet. When you spend two months in the hospital followed by hundreds of hours in outpatient clinics, you really come to know and love the people caring for your child. And they come to love you and your child too. There’s nothing quite as touching to me as a mother than to see other people love and look out for my children. And the number of people doing that for our heart warrior is enormous.
Joy in Every Milestone
I never thought I’d be completely overcome with joy and start texting a million family members and friends when my baby first took a bottle or rolled to her belly or carried weight on her feet. But I was and I did. Okay... maybe I did it with my heart-healthy baby too, but with my heart warrior it all felt completely different. Because when you watch your baby fight so hard just to live and then work and work and work with handfuls of therapists just to do “regular baby things” like eat, breathe, and roll over, every milestone is a huge celebration! Huge! I have so much more awareness of every sign of progress because those signs were so hard to come by in the first months of life.
Sympathy for Others
Before we learned about our baby’s special heart, I always ran away from other people’s hard times. If they were struggling with illness, lost a loved one, or were in a rough financial patch, I had no idea what to do. No idea how to help. No idea what to say. So more often than not, I just looked the other way, too embarrassed to reach out for fear of making it worse. But now I know a little bit better. I understand that what may be needed most is a listening ear, a hot meal, and someone who will tell you it really is as hard as it feels. It’s a work in progress, but our CHD journey has definitely helped.
While I would never wish the experience we’ve had with Congenital Heart Disease on anyone, I would also never trade it for anything. So many miraculous experiences, brilliant minds, and unparalleled joy came wrapped up in that daunting package. It’s been quite the ride.
