Wednesday, March 21, 2007

Shocks to the system

RE: The comment on my last post where a preemie parent tells of being thrown over the edge when she heard of a 3YO former preemie who was just learning to jump.

There are a million of those moments, aren't there?

When Susan was still in the NICU, at about 4 months old, I noticed a new mom scrubbing in, so I greeted her and asked about her child. I felt like a veteran at that point, of course, and remembered how hard the first few weeks were. The mom told me this was actually her second child to pass through that NICU. Her first had gone home after 5 months, but passed away at 18 months old.

It was like a glass of cold water on my face. The whole time Susan had been in NICU, I felt like going home was the big hurdle - once we got passed that everything would get better. It hadn't really occurred to me that we could go through everything we already had, and still lose her months or years down the line.

I knew there would be ongoing issues, but the spectre of death was one that I had put out of my mind until that conversation. From then on that spectre has been with me - whenever she has a fever or any kind of infection - reminding me that her fragile little body might not be able to fight it off. Do all parents fear, deep down, that every illness might be the one that will kill their child? Maybe. Probably?

When I'm around other families with kids around Susan's age and I see the myriad of small ways it's all just easier for them, that's another kind of shock to the system. It's a lonely feeling. That's probably why so many of us are compelled to blog and read others' blogs, to supplement for the shortage of true peers in our real lives.

Here's a recent picture of my little pixie:


DDM said...

Exactly, it's lonely. I started my blog to keep from being Debbie Downer to all my *real* friends. How quickly they tired of hearing me talk about the difficulties of parenting my son while I stumbled along and tried to figure it out. It's still lonely.

The Preemie Experiment said...

So, so true, both what you wrote and what ddm wrote!

I was always so jealous of parents who were relieved when their child passed the age of dying of SIDS. For them, it was all uphill.

For me, death is never out of my mind. Still. My daughter is 8.

When I hear of older preemies dying it comes to the surface all over again.

Besides death there is cancer. Babies who were on TPN for extended periods of time are at risk not only for cancer (liver cancer) but gall bladder issues also. Yikes! It scares the crap out of me.

Parenting a preemie definitely entails holding your breath and hoping that other shoe doesn't drop.

Rob said...

Hey, I just wanted to say hello. I don't know how I've missed your blog up until now, but I'm glad I stumbled across it today. I'm the father of a little girl with a rare neurological disorder that leaves her unable to speak. It was worth coming here just for the title alone. I'll be sure to keep reading.

sammie said...

LOL... my former 24 weeker turned 3 in June and he STILL can't jump! I still check to make sure he is breathing sometimes at night too.. especially when he is sick.