Tomorrow will be two weeks until the "surgery" and its a weird state to be in. I know I need to be preparing, but I cannot for the life of me figure out what I'm supposed to be doing.
Well, for the first few days I made a lot of phone calls and told a lot of different people about what was happening. Friends, family, teachers, siblings teachers, etc. I felt like I could have recited what was going on in my sleep, even though each time I said it there was a pit in my stomach.
Ironically, I thought I would be the most worried about work, and in truth I am the least worried about that. For the past year I have felt anguished about trying to decide whether I should stay at the agency I work for, should I start a full time private practice, what are the benefits and risks to both, and it caused me a lot of heartache.
I knew, without even saying anything, that my supervisor, co-workers, and the whole agency would stand behind me for this no matter what. And they did! The first words my supervisor said was "anything you need, just let us know."
But I still do need to be clearing my calendar and preparing a lot of things to be able to leave work with a clear head to stay home with Nochy for a bit.
Then I spoke to the head of the OT department at the hospital. We talked about his wheelchair, where he's going to sleep, how he's going to Si tin the car, what he's going to wear, whether or not he'll be able to return to school, etc. It was helpful and scary at the end same time.
Since one of my goals of this blog it to help other people who are going through it- I'll be specific in some of the suggestions I'm getting.
-we're probably moving Nochy downstairs to the den for at least the first few weeks so we don't have to worry about stair (we'll set up a baby monitor so we can hear him and come back down)
-He needs tear away pants, though one mother said she just added snaps or Velcro to her sons existing pants.
-We are going to have to adjust one of the captain chair seats in the middle row of the car so that it leans back and has space for him to have his legs propped up. We're going to need to bring in pillows or something to support his legs in the car.
-Not sure he's even going to fit in his classroom, which makes me nervous, I need him to go back to school, I cannot be home for 6 weeks, but I also really need to take deep breathes and just take this whole thing as it comes.
-he may not fit into the bathroom in our house- which means a "commode" he can use privately in a bigger room- oy, just oy on that one.
-Someone suggested a bean bag chair, that might be a comfortable place for him to sit and to be- so gotta start looking for one of those
I think that's it for now. I feel like a tornado is coming, but I don't know how to prepare properly I also know I have so many family members and friends who want to help, which is comforting- but since I don't know what to do, I also don't know what to tell other people to do.
I spoke to a mother in New York who's son has the same thing and the most important thing she told me to prepare for is to "just stay sane"
I'll have to work on that one
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