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Wednesday, March 05, 2008

We got up to see the baby today. This morning was an upper GI series, this afternoon was a head ultrasound. It seems that my son does, in fact, have a brain. The Boy and I are making firm note of this, as we fear in the years to come we will have grave doubts. Pre-teen years, I'm looking at you. Also Adolescent years. And adult years. Gee, let's just call it the entire rest of his life.

The latest on Robbie is that he's outgrown even the open crib. We went from isolette, which is the highest level of infant containment, that nifty plexiglass box with portholes and special buttons, to a warming table, which is essentially a platform with a blanket-covered mattress and Serious Heat Lamps. Then we got him to take to the open crib, which is a plexiglass baby bucket insert that pops out of a little wooden cart. Think microwave cart, only holding a crib instead of a microwave. And now he's in a standard sized hospital crib, with a mattress that raises and lowers like an adult's except by crank instead of buttons.

All those little things that don't add up. The feeding issues. The growth issues. The slightly enlarged ventricle in his head. The failed hearing tests. It sometimes makes me want to question my sanity in wanting and having a second child, but then I remember that my sanity was lost a long time ago and who am I to second-guess the universal powers that decreed that this was the child I was supposed to have? All these little things that add to a bigger thing and we can't see the shape of the total puzzle yet. All I know is that he's my baby and I can't have him home just yet, but that if we're all very lucky he'll be home soon. I just have to be patient.

There are times I'm sick of patience. I rail against the unfairness of this. In the deep recesses of my heart I'm screaming that this ends soon. That the pressure is released, that my little girl overcomes her blocks with communication, that her disorder can find the right combination of therapies that will let her show us what she's capable of.

I'm running from one special needs child to another. I'm going to be doing this indefinately, with some level of intensity, for the rest of my life. Maybe someday I'll have respite, maybe someday I'll find the right person that I can feel safe leaving the kids with for a couple of hours so that I can leave the house without them. Right now the list of people I can trust them with is depressingly small. My husband, my mother. It's not just that I'm picky over leaving her, it's that when she gets overwhelmed and overstimulated there are only one or two things that work to get through to her.

This too shall pass. I just need to keep smiling and breathing and putting one foot in front of the other. Serenity. Now.

1 comment:

Lisa said...

I'm sorry you're feeling so stressed!
I hope you can catch a break soon!