When we were first informed of the challenges that faced my oldest child it was terrifying. Then when our second child was diagnosed with something even rarer and debilitating it was devastating. Being a parent with young children is isolating add special needs or illness to the mix and it’s an entirely new level of loneliness.
There are parent support groups and resources. I started to plugin. For a while, it was helpful. Then it was too much. I didn’t want to spend every hour of my day commiserating with the circumstances we were given. I didn’t want to hear moms talk solely about their kids. I didn’t enjoy that when it was just “typical” parenting drama.
There was a plan of action we put into effect to ensure they received the highest level of care. This included traveling across the country to specialists and getting myself certified in the field of applied behavior. Of course, this was my every day, it didn’t mean that’s all I wanted to talk about.
What happened was me withdrawing from these groups and people. It left us “alone” but it felt healthier. Instead, I found adults who I could converse about things I was passionate about that didn’t include my kids because it was a given they were my priority.
Over time it also felt if I did talk about them it was putting a burden on others. The illness and challenges in our household are overwhelming and all-encompassing. I didn’t see the need to put that in other people’s laps. It has had an impact on some of my emotional well-being but I still don’t want to sit in a room full of people and just commiserate with the daily shit that is our lives.
Now that I am in this new phase of not knowing my own future, once again, I find I’m frustrated that this is all I ever talk about. This is my entire life right now. I find it exasperating. The problem is there is no respite from how I feel. I’m in a perpetual state of vertigo, I’m unable to walk without assistance, and there are parts of my day where I’m just stuck in bed propped a bit off-center and to the right, because that is the only position that reduces dizziness, blurred vision, and nausea.
I know there are support groups out there. I’ve quietly looked at some of the groups online. I already hate it! I know I’d get support from people who understand physically and emotionally how I feel but I also know it’s all we’d talk about.
I’d like a break from it. That’s the real problem. I literally do not have a break from it. Even when someone comes over and we are chatting about something else internally I am feeling woozy and trying to adjust my head to be more still so I can hear the person and not think about how dizzy I feel. It’s relentless and thus all-consuming.
The result is me not wanting to talk about topics I typically enjoy. Books, politics, TV shows, movies, and improv. I’m wiped out just keeping my head because I am pushing myself to do things like reading or watching a show so to jump even further and discuss feels impossible.
People check up on me (THANK YOU!) and even if we try to steer away from “it” we make our way back because for now, this is my life. It’s my illness and journey of recovery. Recovery to what? That remains unknown so I land up talking about that a lot when I don’t really want to do so.
I try to find pockets of time to put it all to the side. There are brief moments of respite but in the end, it comes back to what small victory I achieved, or how I did or did not wake up with brain fog and dizziness, that I pushed myself walk outside at least once, where am I on a scale of 1-10 feeling, and on and on.
I’ve spent the past 15 years looking for other things to talk about besides insurmountable health challenges and now here I am stuck in this loop looking for a way to break it so I can find something else to talk about.