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Lessons I've Learned Since Becoming a Heart Warrior's Mama

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Life hasn’t been the same since I became a heart mom to my 6-month-old daughter, Nylah.

As I navigate through her triumphs and setbacks, I find myself increasingly more grateful for every moment I share with my children and I notice that overall, my own heart feels a lot more than it did before. At Nylah’s delicate age, she has already conquered two open-heart surgeries and proven to be brave and resilient; two of the many characteristics that define the babies, children and adults who are battling a congenital heart disease (CHD).

Nylah was diagnosed in utero with a severe case of Tetralogy of Fallot (TOF). At the beginning, I wasn’t sure if I was emotionally strong enough to be the mother she needed, or to continue being the happy-go-lucky mom my twin 4-year-old boys were used to having. But after daily soul-searching, and a lot of prayer, I am now learning to compartmentalize my emotions so I can mother in the way my children deserve. I spend a large portion of my days researching and reaching out to the CHD community to try and learn everything — good and bad — about Nylah’s TOF. Somewhere along the way, I have also learned a lot about myself and what it means to be the mother of a heart warrior.

I now understand and appreciate the privilege I have to walk alongside my baby girl. It’s been the hardest, but best learning experience of my life. Nylah has made me love harder, express my compassion for others more often and feel every type of emotion on a deeper level.

1. Life with a CHD is uncertain, and that’s OK. 

The hardest thing about the CHD journey with Nylah is that her prognosis literally changes from one day to the next. Nylah had her first open-heart surgery at 1-week-old, her full open-heart repair in April, and after that was supposed to be her “honeymoon” period, or at least that’s what her cardiologist promised. We looked forward to seeing her grow better and feel better, but that never really happened. Those high hopes we had for Nylah were crushed almost instantly when her surgeon told us to expect another procedure sometime in the summer. At her post-opp cardiology visit a few weeks after her full repair we were told to, “Enjoy Nylah, let her be a baby now and have fun with her for awhile.” So we tried. We were thinking about vacations and family outings, everything we had been wanting to do since she was born. But not even two weeks later at her routine echocardiogram we were told, “OK, it’s time to emotionally and physically prepare for her next surgery that needs to happen.”

I felt so defeated. So angry. So heartbroken for my Nylah. Why does she have to go through this again and again? So here we are, not even two months post-opp, and we are preparing for another surgery this week. These highs and lows hurt so bad. As her mother, they break my spirit, they send me to my knees with sadness and fear. But somehow, I always find the strength to be brave and hopeful for Nylah. I have learned to roll with the punches of uncertainty, and I allow myself to feel every emotion that goes with it.

2. Envy and guilt are natural. 

Sometimes I am up late at night, in between feedings and giving her medications, and once she is back to sleep I scroll through social media. I often find myself envious while seeing other people, other moms, enjoying carefree days and moments with their heart healthy children. I would never wish a CHD, or any other illness on another child, but I would be lying if I didn’t admit I ask myself all the time, “Why Nylah?” But in the same scroll through my feed in this last week alone, I read posts from fellow heart moms who have lost their babies to a CHD. And again I ask myself, “Why did that baby not survive? And here mine is doing her best to thrive.”

It’s an internal conflict that goes both ways, and it never goes away. I feel so much happiness and envy toward those beautiful babies who are thriving, and I feel so guilty when I come across a mom who is grieving the loss of hers. My feelings run so deep, tears stream down my face now at just about anything that has to do with a child. I have accepted that these conflicting feelings of envy, guilt, happiness and sadness are now a massive part of who I am.

3. Everyday life is hard for heart siblings.

Along with my baby heart warrior, I am also the proud mama of 4-year-old twin boys who overcame their own obstacles after being born premature at 27 weeks old. Nowadays, I stop my boys in their tracks for a kiss and hug countless times during the day, and just as many times at night, to remind them how much I love them. As a mom of three beautiful children, dividing my time has become so difficult. I often spend weeks on end at the hospital with Nylah, and my little boys have had to do a lot of growing up in the process. It’s so hard to leave them behind when she goes in for surgery, and it’s become so frequent that now whenever I run out of the house for anything the first thing they ask is, “Are you going to Children’s Hospital mom? Will you be coming back?” I can’t tell you how much pain that makes me feel, having to go be with my precious baby but leaving behind my twin boys. Hardest thing ever.

I have tried my best to explain their sister’s medical condition on a level where they can understand how much she needs me, and how although I have to leave them behind sometimes for an extended period, it’s not because they are less important or because I do not love and adore them. I keep them involved as much as I possibly can through FaceTime, taking them along to Nylah’s doctor appointments and teaching them how to help me take care of their sister.

Our new life as a heart family is hard. Every single moment revolves around Nylah. It’s hard for people to understand, it’s hard for her brothers to understand. But we do our best. We make it work. We cherish every breath, because that’s what you learn to do when you get a CHD diagnosis and that’s what Nylah has taught us to do.

We get our inspiration from her. If she can do this, than so can we.


Originally published: June 2, 2018
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