And Now For Something Completely Different (and a bit of a downer, if I’m honest)

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!

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5 comments

  1. Hi Stephanie – I’m so sorry that you are having a tough time. Having a child with so many medical demands has to be exhausting. Add to that the demands of work (like it or not) and the holidays…well, life can be overwhelming. I’ve always felt that heroic actions are often just the seemingly small accomplishments of putting one foot in front of the other each day and taking on each minute with strength you never knew you had. Congratulate yourself for being able to carry on with your blog and everything else on your plate. That’s something! If I read this correctly, I’m guessing that you have few supports right now. As far as your child’s care (and yours as well), do you have a children’s hospital nearby to contact about getting some respite care for your child when needed or taking advantage of other support services they might offer? I hope you find what you need to make these challenges a little easier. In the meantime, you’re a hero!

  2. Hi Stephanie, That’s quite a juggling act you’ve got going! I’m sending some positive vibes and prayers your way. Hope you all manage to have a Merry Christmas in spite of the challenges!

  3. Wish I had the answers for you, Stephanie. We’re there for you in spirit but can’t be there in person when we live half way across the country.

  4. I know it’s hard to imagine it now but it will all work out….I cannot fathom how you juggle all that you do….juggling 3 kids and work and marriage is in itself challenging but your situation makes me breathless…..I wish I had answers….I do know that raising my kids was the BEST and most rewarding thing in my life…..during the hard times I know I did not always feel this way tho. And it was lonely having a husband who was always at work or gone for the military….and I was too busy for grown up friends…..and when u move every 2-3 years u don’t get to invest in friendships…..and believe me when I say it takes a toll on your marriage and your health and your sanity. All I can offer you is encouragement…..You are doing a beautiful job with your kids and this world could use more people like you. Motherhood is THE hardest job in the world and the most important….add a special needs child and careers and it gets even harder….PRAY for guidance…..PRAY for enlightenment……You are a wonderful mom and a wonderful person…..there’s bound to be resources out there to help, I pray you find them or that they find you.

  5. Hi, I’m new to your blog. As funky as this sounds, I really enjoyed this post. I can relate to the need to just lay it all out there. Somehow things immediately seem way more manageable after you’ve taken inventory of it all. It’s kind of like you need to find where you put your courage but you’ve gotta empty your bag first cause it’s laying in the bottom down there somewhere.

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