Monday, November 24, 2008

Good News Not Related to Simon

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(Jaime speaking)
I have a new job! I will soon be working for the Contra Costa County Health Department. Leaving is a bittersweet thing. I loved my coworkers and what I actually did in my old job. However, this new position will have a much more manageable pace (I switched tasks approximately every 3 minutes at my former position- not kidding, I timed it once) and is much more in line with my training in and passion for public health and reducing racial and ethnic health disparities.
For my beloved colleagues and associates far and wide who may be reading this and may not know I've moved on, don't be strangers. My personal email is
We just keep getting great support and love and we totally need it. I start my new job Dec 1st, so Laura really just has a week to work out the routine before she's on her own to get his meds in, keep his feedings on schedule, and figure out how to get out of the house with all of this stuff. It's the level of detail that other folks can't really help with. We're trying to figure out what we really need help with since our beloved folks keep offering. One of the big ones is probably just to come by the house and *be* with her while she's doing all this. It was easy in the hospital to forget that there were always an extra set of eyes, ears, and hands when we needed them. We are also missing the social time and just the feeling that we aren't alone, from the hospital.
We both have been talking about what this all means long term.

We are applying for disability benefits for our baby.
We have a severely disabled child.
Our kid is special needs.
One part of me really wants to reject these labels and just think about this as a temporary thing and just think about Simon, not about how he will or won't fit into all these systems that make up the world. But then I have to remember that he really is ill and there are some programs and systems in place to help families like us. And we're going to need that help.
One of the things that is hard is that a few of folks have said things like, "Oh great! They're out of the hospital. Phew". I always feel like "Debbie Downer" when I have to set them straight and explain that it will be years (at least 2, I think) until we know if Simon will a) continue to stay alive b) get any better and how much better or c) stay as impaired as he is right now. He's out of the hospital and he's not quite sick enough to be in the ICU but he's still really, really sick. When we went to our pediatrician appointment today for a (ha ha) "well" check up and listed all the meds he's on, she was a little shaken. It's times like that I really get it.
Laura today said, "Sometimes I forget that I have to treat him like he's an invalid and not push him too much". He IS. This is sort of the classic invalid illness, right? Pale, clammy, needs to rest all the time, sort of skinny, can't do anything like normal kids, etc. It's so cliche and so goes against my deeply ingrained "tough it out, it's not that bad" thing with illness. Right now and maybe not ever, we can't push him. We can't let him get really frustrated trying to roll over or learn to do something new or his heart gets too stressed. We have to treat him with kid gloves a little bit and it's so ironic. I really wanted to be one of those Moms who could be the safe landing pad for a big boo boo but who would not make a big deal out of bumps and bruises. It's going to be a very tight channel between real concern for his health and letting him take the chances he needs to take to be a well adjusted kid.
We go to Cardiology Clinic tomorrow. Hopefully that will be uneventful and just a nice reunion with folks. Probably some lab draws, maybe an Echo. Who knows what else. It really is a gift to go to this first series of appointments as a whole family so Laura doesn't have to feel like she's navigating this whole thing by herself.
P.S. Thank you to the muffin fairy who dropped off Banana Nut muffins today! Who are you?
As for what folks can do now that we are "out". Pretty much the same thing as before. Just show up as you can. Food is great, visits are great, offers for things are great whether or not we accept them (always greatly appreciated though). Oddly, nothing has really changed healthwise for Simon except for his location. That, and his increased love for bathing...check him out.
"yee haw, living large"

"Wait, what do you mean Carol's not coming to bathe me?!"

For us, a lot has changed.
One step at time.

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