One day at a time

When G was born my sisters both had babies. My niece turned two yesterday, and my nephew is 11 days older than G. I also have two cousins who had babies, one in July before G was born and one in January after he was born.

There's a large group of kids the same age. And here's my little boy. Everybody says how good he is doing and how good he looks, and it's true. He's pretty amazing.

But what he's starting to do, they've all been doing for a long time. What is so wonderful to me, is these parents. They share in my excitement of his achievements. He's 19 months old, and he's just learned to stand. All of their toddlers are running around, but they are SO excited to see him achieve something that came with ease to their little ones. That means a lot to me.

I'm thankful he's my last baby rather than my first. I find I'm pretty relaxed, and I'm actually happy he's kinda staying a "baby". He's definitely a toddler in attitude, but he doesn't get into near as much stuff as my nephew. LOL But it also saddens me. That little ache in my heart when I see my nephew trying to get G to stand up. Or seeing these other little toddlers running while my toddler looks longingly after them. He can't crawl fast enough to keep up. My heart hurts when his little fingers get stepped on or he hurts his hand on something sharp on the ground.

Recently, a few other people I know have had babies that are very early (around 25 weeks gestation). I feel so deeply for them. For the struggles they are facing, for the fears they are facing, for the realities they are facing, for the future they are worrying about, and for all those things that hit you when you bring a child into the world. It's hard enough worrying about a "normal" child, but when you have one with challenges you don't know what to think. You hear "Take one day at a time..." an awful lot, and it is truly one of the best pieces of advice to recieve, but to actually put into practice... Easier said than done.

Before G was born, and we found out he had spina bifida, hydrocephalus, bilateral clubfeet, and he would have bowel/bladder issues, the future seemed to collapse. It was impossible to not feel like my entire future was changed. It was hard to not think about those changes and how my life would forever be affected. It was a Big Deal. I thought and felt ways I never imagined I'd feel. I wished things that now make me sad. But it all had to be done. It was part of a process. It was grief over losing my future that I envisioned. It was grief as expectations were pronounced dead. It was grief as dreams were lost. And then that process shifted. Perspective changed. Acceptance, dealing with it, joy returned.

One day at a time. It is valuable advice. Sometimes, though, it's impossible to do. Sometimes it's the only thing that'll get you from one day to the next.

I do now take one day at a time. I worry about G's future now and then, but it's not an overwhelming worry. When we're going through a crisis, the only way I can survive without dissolving into a helpless mass of tears is to resolutely take it One Day at a Time. Sometimes it is one hour at a time. If I look too far ahead, if I allow those fears and worries to creep in, I become overwhelmed and incapable of facing the situation.

As he's gotten older, as we've faced some major, scary surgeries, and made it through, the future doesn't seem so frightening. I made it through some heavy stuff, and I can do it again.

Shunt revisions

Tomorrow it will be a year ago that G had his second shunt revision. I've been working out in the garden the last couple days, and I was wondering why it kept popping into my thoughts. A year ago I was feeling so hopeful with promise and thoughts of getting gardening done. Life felt good. And concerns started creeping in. I ended up going in on a Friday with him and spending the weekend. His revision was on Monday, and we took him home on Wednesday. It seems so weird that it was only a year ago.

Thankfully, this year I don't feel as if anything shunt related is going on. Well, I still worry, and I check the signs, but he seems okay. His burr hole "soft spot" has been fuller but not tense.

It took a lot out of me, and I ended up not doing any gardening when I got home. I think I did a few annuals around the yard, but I didn't do anything special.

There is such a love/hate relationship with that thing. I love it because it's the reason he's still alive, but I hate it because of its frailty. Not even frailty really, but it is flawed. Shunts are as dependent on the person in some sense as the person is on them. G has had 7 operations on his brain, and he's not even two years old. It really freaks me out sometimes!! Most of the time, though, we go on our merry way. :) His shunt failures/malfunctions have occured due to tissue blockage and the gel incident.

Well, I am going to try and not worry about the shunt this week. It'll probably me more on my mind, though, I think.