Most days are good. I want to preface this by saying that. But knowing that my itty-bitty baby is having open heart surgery in just a couple of weeks is very anxiety inducing for me. I've had a few rough days this month. Where I just can't stop crying and I'm scared. My emotions are up and down, back and forth, and inside out. I mostly try to stay positive, and I think I'm pretty good at that. But once in awhile the bad thoughts creep in and I feel very overwhelmed and helpless.
I am not the type of person who's ever asked "Why me?" I know things could be worse. But on the hard days, I have found myself asking "Why him?" It's not fair. He didn't get the same start as everyone else. He doesn't know any better and he's so strong and brave, but he's so little. He's so innocent. He's got these cute little crossed eyes with droopy eyelids and I find the adorable scrappiness of it all very endearing, but I know people look at him differently and wonder what is wrong with him. Does it matter? No, of course not. But sometimes it makes me a little sad. Most people who take the time to meet him and ask about him, fall in love with him instantly and see his happy spirit and compliment his beautiful smile. He has a lot of people praying for him. We have a lot of people praying for us. And for that, I'm so grateful. That's all I can ask for at a time like this.
I just want him to be OK. He has become my bestest little buddy, and there's no looking back now. He has to be OK. We simply can not have it any other way. Period.
You know, people say things like "You were given a special child because you are a special person who can deal with it." or "God won't give you any challenge you can't handle." or "Wow, you guys have been so brave. I could never do something like that." But honestly? I never imagined I'd have to do something like this either. I never imagined that at 2 weeks old, my baby would be taken from my arms and sedated and put on a breathing machine. I never imagined that I would see him wheeled past me with his chest cut open in between heart attacks. I never imagined I would see him laying there, almost lifeless, swollen and puffy and looking so much older than he was supposed to. I never imagined that he'd have to live with a heart condition the rest of his life. I never imagined the pain I would see my husband go through. I never imagined my mind could go to such places of hopelessness. And I never considered myself brave.
We only handle it because we have to. What choice do we have? As a mother, what choice do I have? We could mope around all day and feel sorry for ourselves, but it wouldn't do anyone any good. So yes, we will have rough days and crying days and sad days. You need those days. You need to feel that grief to process difficult challenges. But we have to be tough too. Not only for our child, but for ourselves and for each other. Stephen doesn't understand any of this yet (heck, I'm not sure how much of it understand, either.) But it has taught all of us some things about how precious life is and how important family and the support from people around us are. It has taught me to draw strength from a place inside of myself that I never knew existed. It has taught me that people's problems are all relative. And while I never imagined the horror of almost losing my first child, my beautiful boy, I also never imagined the joys I would feel. I never imagined I would consider myself so lucky. I never imagined...
I saw a quote on Pinterest the other day (yeah I'm waaaay addicted) and I thought it was so fitting for Stephen and our family. This will not be his last surgery, you know. He will need several more as he grows. And as he gets older I think it will be more difficult. But I know I will tell him this:
"You have to be brave with your life so that others can be brave with theirs."
I know people who live their lives this way. And when I read this to myself, it brought tears to my eyes. I imagine explaining it to Stevie when he's old enough to understand. Good words for any of us to live by.
We all have challenges.
But we will be strong anyway.
Because we are brave to someone.