Slow and Steady

Today started out much like every other day at home... I "woke up" (if you can actually call it waking up after not really going to sleep) mad at the world, sleep-deprived and overwhelmed. We still haven't really settled into a routine here, and we're trying to coordinate all of Holden's home medical needs and therapists with his many appointments and command appearances outside of our little bubble. I started the day in a pretty depressing mood. I snapped at my husband, threw things around with a little more force than necessary and sulked by myself outside for a little while. (In case you're wondering, it's spelled b-r-a-t.)

However, my day ended on a good note after reading through some messages and emails when I got online this evening. Our lives are filled with the most kind-hearted, loving, generous people on the planet. We don't deserve them, but I am thankful for them all the same. You will never know how much I needed that pick-me-up today, and I am beyond thankful for the many blessings in our lives. This life isn't all rainbows and roses, but blessings can be found all around us.

We are slowly adjusting to our new version of normal at home. We spend most of our days around here either pulling out medications, measuring them or pushing them. He takes more meds now than he's supposed to take after his transplant, and that is a LOT of meds. I was thinking about those meds this morning as I was trying to measure and cursing them. I thought about how much of our lives revolve around them. Truly, everything in our day revolves around medications. And yet, each one is a parent's hope, a baby's future. Each one of them helps my baby live to see another day. When I think about it like that, it's hard to complain about the chore of dispensing meds.

Holden seems to be adjusting a little better each day, even seeming happy for short periods of time. He's still throwing up enough to break my heart for him daily, but that's nothing new for him. He has another ear infection, and we're going to his doctor's office in the morning, where he'll probably have to get an antibiotic shot to start his day off. Poor kid.

Overall, he's seeming happier. I'll be satisfied when the smile on his face is more of a permanant thing, but I'm content with making steady progress for now. I'm sure my disappointments are more about setting my expectations too high than anything, but I refuse to set them any lower. He deserves to have the bar set high for him.

I think we set the bar lower for him too often because of all that he's been through, and maybe that's a mistake. It's hard when I've been thinking so much lately about how much Holden has missed, and is still missing out on. Trent tried to take him for a tractor ride last night, which he used to adore, but now the tractor terrifies him. It's another small thing, especially in the big picture of the miracle that is Holden's life, but it gets me down regardless. I feel like we should be providing extra happiness somehow, to make up for all that he's lost, but I realize that's not even possible. I'd settle now for just a little bit of normal happiness. Inside of that beaten little body is a little boy crying to get out, and I'm more determined than ever to help him find his way.

Life is short, but wide. Holden's journey only makes it wider.