Delta Kappa Momma
Hi friends, welcome to the heart community! It’s the sorority no one wanted to pledge, but here we are, right smack dab in the middle of initiation. Being the mother to a child with Congenital Heart Disease is pretty daunting. Am I right? Heck, being a mother period often feels overwhelming, let alone the complexities that CHD adds to the mix.
My son, Calvin, was born with several severe congenital heart defects. After 7 weeks in the hospital and one open-heart surgery we finally got to bring him home for the first time. I was so excited to be home, but scared out of my mind to be the only person caring for this small, fragile human for most of the day. Daily, I was setting alarms on my phone to give 10 different meds and mixing a cocktail of fortified breast milk and formula every 3 hours. I was navigating tube feeding (plus doing actual math to program that feeding pump, you guys), and, naturally, evaluating his color, oxygen sats, and breathing constantly. Looking back now I often think, “That was NUTS.” I felt like a crazy person. I also felt totally alone.
Does anyone else understand?
My husband and parents had all gone back to work and my friends didn’t really have any way to truly understand what we were going through. When I talked to other moms they would ask normal questions like, “So, is he sleeping through the night?” Of course, due to the tube feedings Calvin was never hungry. Ever. He slept all night and other moms told me I was SO incredibly lucky. I believed them. Calvin was such a good baby. So why did I feel so exhausted sleeping 8-9 hours a night? He was home and had absolutely dominated his first heart surgery, but I felt guilty for not feeling happy. Some of our ICU neighbors had left the hospital with empty arms. Thankfully, my son was thriving. How could I not be overjoyed?
Searching for Sisterhood
The truth is, raising a child with CHD is not normal. Motherhood in general is hard, but this was a different kind of hard. I needed a mentor, I needed a community. I needed someone to tell me I was doing an amazing job, and that I could learn how to do anything to be the best mom for my child. That one day things would get easier. Now, don’t get me wrong, my husband and family were great encouragements to me, but they are supposed to say things like that, right? I needed someone to see me, to know what I was going through, and to help me learn to be a great “heart mom.” Someone who really understood what I was going through.
You are a great mom.
So, hear me now, momma. I see you. I mean I really see you. I see your calendar full of doctor’s appointments and therapy visits. I see your stress level rise as you think about going back to work. I see your bucket full of meds on the kitchen counter and the 9 million sticky syringes strewn about your house. I see your love for that child. And I just want to tell you, you’re doing it right.
This place is for you. Heart Savvy Momma isn’t just my self-proclaimed title, it’s your title too. This is a place to ask questions, get encouragement, connect with other heart moms, and find the confidence to say, “I am a savvy momma. I can do this.”
And one more thing – maybe you’re here and you’re not a “heart” mom. Maybe your child has a different medical diagnosis. Maybe you’re struggling with Post Partum Depression. Or, maybe your just looking for some fellowship in the throws of motherhood – you’re welcome here too.
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