Since I’m supposed to be using this blog for general stress-relief and other mental health benefits, I should probably stop the fun holiday posts and get down to the real issues (not that I don’t love the holiday posts). I’m just going to brain dump here, forgive the ramble. [Edited to Add: I felt so much better after getting all of this out of my system.]
I’m having a rough time right now.
For starters, I’m struggling with a lot of uncertainty. I mentioned our current consideration of the Baclofen pump a few days ago. In addition to that, I’m starting to grapple with the very real question of what we are going to do next year when the little man starts school. What are we going to do when we have to transport his wheelchair around? It doesn’t fit in our cars, especially not with other people in there. He can ride the bus to school, of course, but who is going to pick him up or be there when the bus drops him back off? Will we need to hire a nanny? Can we afford that? Will I have to cut my hours back at work? Can we afford that? Will my job suffer?
Our daughter’s school doesn’t have buses, so I’m already picking her up every day – taking my lunch break to pick her up at 3:15, then heading back to work four days a week. I can’t keep that up forever. This current plan keeps me on the road 39 miles a day. We only live 9 miles from where I work. The kids are going to be at schools six miles apart from each other next year. How in the world is that going to work?
Outside of the basic transportation issue is the big question of summer care. There aren’t exactly special needs daycares popping up on every corner. Where is the little man going to go for those three months? Back to those nanny and work questions. Can we continue to do this and both work out of the home? And therapy. Even if we can get the little man approved for summer therapy (and I’m sure we can given the level of his disabilities), who are we going to use? How will we get him there? I’ve never worked with any therapists in this town other than his regular therapists at school and at the children’s hospital. It will be like starting over.
And another looming problem – the little man is quickly getting too heavy for me to carry. I try not to even think about that one.
Work is wearing me down. I won’t go into specific complaints because 1) it doesn’t really matter, 2) I’ve never thought it was very smart to do that, and 3) several coworkers read this blog and will all know the next day. How does one become independently wealthy? Some days all I really want to do is work on my projects (mostly writing) from the comfort of my own home. Other days I know going to the office every morning keeps me sane. I tried being a stay-at-home mom for a few months when my daughter was little. Didn’t like it. Plus, I love my career. I know a lot of people aren’t lucky enough to be able to say that; I can’t let a few warts scare me away.
Moving on, it is becoming painfully clear that my social life is nonexistent. I’ve already talked about the difficulty in finding a babysitter for a five year old who doesn’t talk, sit-up, walk, or eat by mouth. On top of that I just don’t really have any close friends around here. Now, I know and love a lot of really wonderful people. I have great people in my life that I can meet for lunch or the movies, but I don’t have the kind of people you call up to bitch about stupid stuff or wander around the mall with for hours. The go-to friends. We didn’t live here for very long before we adopted the little man and – I suppose – I let the stress related to his medical issues stop me from cultivating those kinds of relationships. It’s only become harder as he has gotten older.
At home it is the typical stuff: strained finances (right at the holidays, naturally), overextension (always, but we aren’t as bad as some), not being able to get the husband to do the things I’m counting on him to do (he seems pretty burnt out too lately), laundry. There is always laundry, right? So much damn laundry.
In better, but totally unrelated news: I’m taking a weaving class in January. With a loom, people. A loom!