Day 50- Part 2

This has been a strange night… Maybe it’s the eclipse/solstice. Maybe it’s because I haven’t slept in forever. Maybe I’m getting that ICU psychosis everyone keeps warning me about. Whatever the cause, I’m feeling very sentimental and gooey.

I don’t post a lot about feelings on this blog… Mainly because we don’t have time for feelings around here. We’re in survival mode, just fighting to keep our heads above water. Our lives are like an episode of Grey’s Anatomy (only a lot less entertaining), and I don’t know how to speak like a normal non-hospital person anymore. The feelings are still there, just locked away tight most of the time. I have such a jumbled up mix of emotions on any given day… Hope, anger, shock, helplessness, fear, faith, joy, thankfulness, isolation, frustration- All there.

Everything suffers in the beginning of an experience like this… Relationships get harder to maintain, and there’s a certain distance between yourself and the rest of the “outside world”. Some friendships fade, and others become closer and stronger. Your marriage takes a hit as you both try to process the same experience filtered through two different minds, and struggle to stay close while the daily grief rips you apart. The financial hardships on top of the struggles add even more stress. I have moments where I am confused as to how I really feel… I try to fight off the sadness and allow the joy to have control. Some days I win. Some days I lose.

Being told that there is something wrong with your baby is overwhelming. It’s unbearably so when they tell you that they can’t fix him. I’m helpless as I realize that all of this is out of my control. There are times when I am so mad at the world I could scream. I’m paralyzed with fear sometimes that he may not make it. And if he does, he may never enjoy the same things as other little boys in the world, and he may never be the same happy kid I brought in here. He doesn’t understand why every visitor to his room brings a new painful experience with them. He doesn’t understand why I stand there and let it happen, or worse- hold him down while they do it. He doesn't have a lot to be happy about, but he still soldiers on.

And that's the lesson I try and take away from every day in here. Somewhere along the way, hope surfaces. I will never have the perfect, healthy little boy I dreamed of, but I have the gift of something bigger than that. I have a superhero. I have a little man who has endured more in his short life than most of us could ever imagine, and the strength of his will takes my breath away.

Holden’s heart may be broken, but these doctors saved his life. His surgery bought us time, and this journey made our path to transplant clear. It taught me about hope and faith. Real faith. It taught me what it means to appreciate. Days... Hours... Moments. I have faith that we will make it through this, and hope that we will make it through with grace. Hope that we will arrive exactly where God wants us to be, exactly when he wants us to be there. That requires patience as well, which has never been one of my virtues. But I have to remember, this isn’t about me. I’m just a ticket holder to the game.

Up until recently, we avoided all talk of future plans… It was just too painful to even think about how we would move on from this, if we even could. We are always getting through today. Just today. But now we may be at a point where we can stop worrying about just surviving, and turn our efforts to thriving… And he will thrive.

Hearts are mended. Hope is rewarded. Prayers are answered.

We are beyond thankful for his life and are reminded daily that he is a miracle! This experience has taught us to live deeper, appreciate more and open our hearts more than we could have ever learned in a lifetime. I am on-my-knees grateful. And if you happen to be on your knees too, we'd appreciate a prayer sent his way. :)