By Katelyn Stocker
I’ve really been wrestling with my identity as a heart mom. I don’t want it, and I don’t want it to define me, but it does. The day we found out about Mae’s heart, my life changed. My title changed. I didn’t feel ready, but I never will. I felt totally overwhelmed, and I still do. I still fall asleep thinking about my heart child. I still wake up thinking about my heart child. The future is so unknown, but each day is a victory.
It’s one thing to be a heart mom at home: scheduling, monitoring vitals, managing medication, juggling kids, keeping everyone healthy. It’s another thing to be a heart mom at a doctor’s office or hospital: advocating, translating, holding and protecting. It’s another thing to be a heart mom out in public: watching closely, avoiding injury and sickness, explaining things (“Yes, those are surgical scars,” “No, please don’t touch my child,” “She might look cold, but she’s not,” “If she says she’s dizzy, she is,” “Don’t push her.”). One thing that has been really hard about being a heart mom is meeting new people. It has been nearly impossible to meet people and not tell them that I am a heart mom. Because when one mom meets another mom, the first thing we talk about is our kids and when I talk about my kids it inevitably comes up that my son has a metabolic condition and, oh yeah, my daughter has half a heart. At that point things always get awkward, and that is when I get frustrated that this heart life defines us. There is so much more to Mae than her broken heart, and there is so much more to me than having kids with medical needs, but it is a huge part of our lives. I’ve only been a heart mom for four years, but it feels like a whole lifetime.
I am a heart mom. I’ve thought about burying my child more times that anyone ever should. I’ve handed her off to be sawed open, twice. I’ve seen her scream in overwhelming pain and fear. I’ve looked into her eyes and not seen her in there. I’ve seen her stare back at me with no expression but pain in her eyes. I’ve held her while doctors and nurses did things to her that she did not approve of. I’ve had to tell her, “It’s OK,” when really I didn’t believe it myself. I’ve seen her question her safety with me. I’ve cried for her and with her in ways that have touched my soul in a place that I didn’t even know existed. I’ve held her like a baby while she sobbed because she didn’t understand what was happening to her.
I’m a heart mom. I know my way around a hospital room. I know more about the heart than I ever thought I would. I own and can use more medical equipment than I ever thought I would. I have a bond with my heart child that is so close I can’t even explain it. We have walked through it together, every step. Every single one of the many appointments, we have kept each other company and held each other’s hands. We have both comforted each other. We have spent nights snuggled up together watching movies in a hospital bed. We’ve spent more time singing in the car together. We’ve laughed and cried in the bathroom more times than I care to remember. We’ve played “Doctor Mae” and “Mommy Mae.” We’ve danced. We know each other in a way that is almost weird. I often feel bad that I don’t have the same relationship with my other kids, but at the same time I’m grateful that I didn’t have to form the same relationship with them. But, through it all, we’ve been so blessed.
Being a heart mom isn’t easy, and it never will be. Even when Mae is an adult and fully in charge of her own life and health care, I will still worry. I am the one who remembers what it was like to hear her diagnosis for the first time. I am the one who fought for my unborn baby. I am the one who took her to the hospital every other day after she was born. I will remember all of the hard appointments. I will remember the surgeries and recoveries, when she will forget. I will forever be a heart mom.
Here is THE thing though. I realized today, as I was fighting against letting my heart mom title define me, it’s ok to let it define me — it does define me. Because this life is the only life we get, and this is the life that we’ve been given. My family was assigned this job, to be one of the many heart families out there. I’ve been struggling with that concept for almost four years. I’m slowly learning how to accept it, how to be strong, how to cope and most importantly how to use it for good. My biggest assignment in life is being a heart mom and helping my daughter to be a strong heart warrior.
Katelyn Stocker is a mommy of four who would love to have time to paint, craft, write and sit on the beach!