Hi everyone,
I am wondering if anyone has any ideas to contribute to my current situation.
My husband & I have 1 child (my stepson but we have full custody & the mother is not involved). He is 12 years old & has Spinal Muscular Atrophy Type II, a rare genetic condition that causes his muscles to deteriorate over time. He is in a power wheelchair & needs help with virtually every physical task (mentally he’s beyond his peers - he skipped a grade, he’s in normal non-special Ed. classes & gets all A’s & on the Honor Roll every semester so far). He has a para pro to assist him with physical tasks at school, but outside of school, it’s pretty much just us. We can’t really rely on anyone to help us because of his size (100 lbs) & even though we have a patient lift to use in our bathroom, other people’s houses & even public places can be a challenge with bathroom & accessibility needs. He has doctors’ appointments with uncountable specialists regularly, plus if he gets sick we cannot send him to school. Sickness hits him harder than the average kid because, even though you’d probably never think of this, do you know how many muscles it takes to throw up, sneeze, cough, or blow your own nose? It is a safety concern as well because if he cannot expel mucus in a cough/ sneeze, it could prevent him from breathing. Don’t even get me started on the daycare situation for summers off of school…! Long story short, he requires a LOT of flexibility when it comes to our schedules.
It is really taxing on my husband especially, because of the two of us, I have the “better” job, but it’s standard work hours with some, but not much, flexibility & a boss who still thinks old school: productivity = the amount of time you are in the office. I make pretty good money all considered ($62,500 before taxes), & it is a stable income obviously. When my husband held his last full time job as a supervisor, it was an overwhelming amount of responsibility on me, because it was had to be a split 2nd-3rd shift (we need someone available at all times for our son) so he wasn’t home at night. Evenings with any child aren’t exactly stress free, but couple that with his needs, & I couldn’t handle it. So he started working as an independent contractor because it’s something that he can dictate the schedule & doesn’t have to answer to anyone about what he needs for our little dude. He’s done construction & now has a pretty lucrative gig of detailing semi trucks.
It’s worked for us to a point so far, but I want more for him & for our family. He is a provider, so the idea of a “stay-at-home” dad is not for him, even if we could afford it. But the IC thing is tough too. The income always fluctuates & feels like the bottom will drop out at any time (like it has so many times before), plus it’s impossible to budget for his income. It just feels like he has no way forward, & we have no way upward. We want to get out of debt, we want to save, & travel, & renovate our home to add to our family, & while I make enough to pay the bills, it feels like that’s all it is. We’re just existing.
In a perfect world, he’d make the money & I’d do the stay-at-home mom thing & take care of our boy, but unfortunately, I currently have the stable & higher earnings that we need right now. Does anyone have any suggestions or advice? I’ll even take suggestions on childcare/ help for kids with disabilities. It just feels like we can’t be the only ones out here struggling to make a life around his needs…
