Monday, December 8, 2008
Sad tonight...both of us. I'm really feeling a new phase of acceptance/grief/loss in this whole thing. I'm meeting new people that don't know I have a baby. They haven't been with me through this journey and I have to integrate this new identity into my first meetings.
I feel like I can't just say, "oh, yeah, I have an 8 month old" and leave it at that. What that implies is so far from our reality that I would feel like an imposter. The reality that we have a pretty severely disabled kid and it feels so overwhelming sometimes. It's like there's some really long, exhausting road ahead of us and it feels sort of bleak and oppressive.
The other hard part for me is the uncertainty of it all. This could be what our lives look like forever. Or, in 2 years Simon could be totally recovered. Or, in 2 years Simon may not still be with us. I have no idea what is coming and it's different than if he had, say, Down's Syndrome and I had some semblance of what things might be like in 2 years. We could adjust, accept, find community with others who are struggling with the same thing. This illness is really isolating in a lot of ways- we can't go out, hardly anyone else has this problem and once he gets his NG tube out it won't be obvious that there is anything wrong so we will just pass for a normal family which I think actually will feel lonlier.
We've become a sort of "high maintainance" family. We have all these restrictions now- people have to come to us, we can't go to certain types of events, everyone has to be super anal about washing their hands, etc, etc. It's so not what I envisioned. I thought I'd be the kind of parent who walked out the door with my kid in a sling, a diaper in my pocket and a few dollars, not a backpack with a pump, a towel to catch puke and a sign that warns people away from touching him.
Adjusting to a new environment and a new "normal" at work is so great and hard because it means I am integrating Simon being sick long term into this new identity. It's really, really sad and people have been awesome. But even that is hard- a coworker used to work for CSS- California Support Services, and was talking about how Simon is so disabled that we probably qualify for all sorts of stuff and that because he's obviously at risk for Developmental Disabilities (not necessarily cognitive, just delays in other areas) that we might qualify for other programs. Whether or not we really do qualify for the programs, it's really intense to hear people who have knowledge about disabilities immediately identify and categorize him as so vulnerable. Ugh.
Hopefully a lighter post next time, but we are where we are. It's been a hard couple of days of reality check.