I am a heart mom.

I've been trying to sit down to write this post for a long time but I haven't been able to find the words. Then I think, ok I'll just post an update about Maelyn, but realize I can't do that without writing this first. "Heart mom" is the term used in the congenital heart defect community for the mothers of children with heart defects. This community has other terms such as heart warrior for those living with heart defects and heart dad. Well, 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 yet it does. The day we found out about Maelyn's heart my life changed, my title changed. I didn't feel ready, but I never will be. I felt totally overwhelmed, but I still do. I still fall asleep thinking about my heart child. I still wake up thinking about my heart child. The future is still 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 doctors 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, 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 Micah has a metabolic condition and isn't supposed to eat sugar 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 Maelyn 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 three and a half years but it feels like a whole life time. 

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 I really 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 others 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 Maelyn' and 'mommy Maelyn'. We've danced. We know each other in a way that is almost weird. I 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. Through it all we've been so blessed.

Being a heart mom isn't easy, and it never will be. Even when Maelyn 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 God gave us. God chose my family to be one of the many heart families out there. I've been struggling with that concept for almost 4 years. I've prayed daily for God to take that away and to heal Maelyn completely. But God has a much bigger and much better plan for us and I trust that. I look back over the last four years and God has been so incredibly faithful in sustaining Maelyn. That is the real story here. Through all of this, God was walking with us and holding our hands too. Every appointment. Every scary moment. Every owie. Every tear. God was there. He cried with us. He laughed with us. And he will continue to walk us through this life that lays ahead of us. Jesus has been our only strength, and that will never change

I started this blog when we moved to Colorado in order to update friends and family on our life but it quickly became much more. This blog is the story of my life as a heart mom. It is where I have written the cries of my heart and processed the complications of life. It is not really about the kids, it's about me. I am a heart mom.

As for Maelyn... She is 7 weeks post exracardiac Fontan procedure (aka open heart surgery) and she is doing amazing! After an extra stay at Hershey Medical Center due to fluid in her chest pressing on her lungs, she has been recovering fast and well. She is now better than before surgery! Her oxygen is in the mid %90's! She is acting like a normal three year old. She has the energy now that she never had before. She can keep up with her brothers, running around the house and playing tag. She is eating great again, she is independent again, she is her silly sassy imaginative self. She is in a sweet spot right now. She is just about recovered, the pain is gone, the weather is getting to be the best type for her, not too hot not too cold, she isn't sick, she is starting to forget the bad parts of the hospital stays. Next week will be her 8 week post op appointment. Hopefully she will get off the lasix and just be on her normal asprin. After that appointment we are going to need to enjoy this sweet spot she is in! We don't know how long she will feel this good. We don't know if winter will still be as hard on her as it was last year. It should be better but the cold dry air will always be more difficult for her than it is for us. We don't know how long her body will be able to function efficiently with this new circulation. At some point in her life her other organs can be affected and her heart can start to do some weird things to compensate. 

Everyday is a new day, a new challenge, a new blessing, a new victory. This is the heart life.