Day 109

Today was Dr. Lemler's last day of rotation on our floor. As he was saying his goodbyes, he casually mentioned that they might be thinking about sending us home late next week. We had been told that we could start thinking about going home before, but this was the first time a doctor put a timeline on it for us. Any surgeries that we would put him in for are on hold for at least a month while he gets a little stronger, and they don't see any reason to keep us here that long while we're waiting. Of course, we expect to be back soon- either for his abdominal surgeries or his heart transplant, but it would be such a blessing to have a reprieve from the hospital for a little while. I don't think I've even processed it all yet- We could be going home!!! We handle most of Holden's care in here anyway, and theoretically we could do the same thing at home.

I think I'm excited, but mostly terrified. Handling his care in here means that a competent doctor is only a page away if/when I screw something up. At home, we'll be on our own. Don't get me wrong- this is what we've hoped and prayed for since day one. I'm just not sure we're qualified to be wholly responsible for the little man's care. It's difficult enough to take a baby home from the hospital, but taking a baby home who has such widespread issues completely paralyzes me with fear. I pray that we are strong enough to handle the transition and not forget anything terribly important- like the meds that keep his heart working.

The fact that we're even talking about going home in the near future is an answered prayer- nothing short of a miracle. Holden has already earned a lifetime of being a complete hero in my eyes. He is hope. He is joy. He is rocket-propelled potential.

Overall, I am filled with hope for the future along with a heavy dose of fear. I am hopeful for a future full of "near normal" days for Holden. I am hopeful for many years ahead of watching my son grow into a man, of learning who he is and who he will become. I am hopeful that he will have the chance to pay forward the miracles and kindnesses that have been gifted to him.

But there is also the reality of having a son with a broken heart and the unknown that comes with that- How long will he have to wait for his gift of life? How long will his own heart last? What kind of long-lasting effects can we expect from the devastation of his first year? How can I ever stop watching him and worrying about what's going on in that perfectly imperfect body of his, waiting for another shoe to drop? Riddle me that, Batman...

I want my son to grow up and lead a "normal" life, whatever that is... I want him to grow up and marry a girl who I won't think is good enough for him, and have children of his own. I want him to feel for himself how much a heart can expand when you become a parent. I want him to have the chance to make mistakes and learn from them, and become a stronger man of God because of them. I would be lying if I said the fear of never getting to see these milestones in his life doesn't wear me down some days.

It's easy for outsiders to look at him and think he has never been sick a day in his life. It's easy to look at him with clothes on and never know how many days of his first year were spent in a hospital, and how much he had to go through to have a chance at life. He is one year old, and already he has scars that will never heal. I have moments of overwhelming sorrow for what Holden has already been denied at such a young age. I have moments of complete fear that each day might be the day his heart will stop working before we're able to put a shiny new heart in his sweet little body.

But for the most part I am learning to move past the fear and the sorrow. Some days I'm successful, some days I'm not. I am learning to live, love, laugh, and remember every single day to drop to my knees in thanks. I'm a work in progress, but I'm getting better at it every day.

I am truly thankful for the many blessings that are mine, and I thank God each day for loving us enough to give us the chance to love Holden.

God is good, all the time!