March 7, 2014

Some days.. some days are harder than others. It’s hard to see Matthew’s progress because I see him every day. People who see him infrequently notice the changes. And, honestly, I see changes too. I’m not blind to it. I spend a lot of time studying the poor kid to find those changes. I need the evidence that things are getting better. It’s what helps get me through appointments, therapy sessions, weighing food and meds, checking in with the transplant team.. all of the draining things that are part of the status quo around here.

We are just chugging along, doing what has to be done, loving our time with him, making every cuddle session a therapy session, happy as can be. Then, BAM. Out of no where I’m inundated with reminders. It’s not one. It’s not even one day. It’s day after day after day for a week, sometimes two. The crying newborn on the adjoining aisle of every store that I go in, reminding me of the time that we never had with Matthew. The stupid picture on the diaper box of a baby eating it’s toe. The Facebook feed full of friend’s babies doing things that Matthew can’t do. All of the pictures and videos of Ruth as a baby. All of them. Matthew was born the day after her second birthday, making it all too easy to see where he should be and where he isn’t. Usually, I can barrel through those things. It’s just part of life. It’s not who Matthew is. Who is he is wonderful and inspiring and amazing. But every so often, something I see is like a knife in the gut and it’s all down hill from there. The next few days are filled with thing after thing that turn that knife deeper and deeper, until one day it just stops. I get my bearings. I refocus. We start off moving forward on our path again.

This morning Matthew was in occupational therapy. Or at least he was supposed to be. He was crying while nurse E and I struggled to find a problem and settle him (we got kicked out of that therapy session eventually. That makes 3. I’m sure he holds a record at that place). We are at a children’s therapy center. The place is filled with kids with all kinds of special needs. But today, I look behind me and there is a Daddy with his little girl. She’s delayed for some reason. The therapists are helping her with her head control and her belly time. Just like Matthew. Except, unlike Matthew, she is four months old. Her head control is leaps and bounds beyond his. She is sitting up straight. She is holding a toy and putting it in her mouth. ¬†And I feel like I am questioning myself again. Maybe if we had started therapy sooner? been more aggressive? maybe if I hadn’t left him alone in the NICU after that first round of dialysis?

My head is filled with the why’s and what if’s and it’s not fair’s. After a week of being assaulted by reminders, I finally escaped to the shower where I could cry away all of those questions and remind myself of how lucky I am to have that precious, happy, awesome little boy in my arms.


On a random side note. The first line of this post has this song stuck in my head. Some Nights. Give it a listen. It’s happier than my post.

Belly time practice

Belly time practice