New Year, New Me?

I both love and loathe this time of year, with all of the recaps from social media influencers, bloggers, authors, celebrities and everyone else. It can be fun to see what everyone has accomplished, but it can also make me feel like I should be doing more to keep up.

I went back to teaching full time this year, which has been exciting and also stressful. I love my job. I get out of bed every morning and I can't wait to get into my classroom and interact with my high schoolers. They are so fun and it is a joy to be with them. When I was chatting with a fellow teacher last week, during a little faculty Christmas social gathering, I mentioned how old my littles are. She said, "Wow. Right now it's like you have two full time jobs." And it hit me how right she was. I definitely feel as though I'm working two, demanding, all-encompassing jobs. Both are incredibly important to me and both take up all of my time. I don't seem to get a break from either place. I have committed to keeping all of my grading at school, and I'm proud to say, I've only had to grade at home ONE time this semester. This is HUGE for me because I am a procrastinator and I always have been. I knew I needed to be organized, going back to work full time, and I've been great at that...in terms of my school job.

My home job? I can't say I've been as organized. The laundry piles up, I hate cooking dinner after I get home from teaching, and I just want to sit on the weekends because I don't get any down time during the week. Our kids are older now, and after they go to bed, B and I really only have about an hour before we need to start getting to bed ourselves. Where is the time I get to myself? Pretty non-existent these days. I use the weekends to "catch up" on all of the boring things I can't do during the week---laundry, grocery shopping, returns, driving kids to activities, etc. I try not to do much during the weekday evenings because it ends up stressing me out. Our kids' activities are almost all on the weekends for this reason. I'm beat when I get home! B is an amazing help, and I appreciate him always asking what he can do. As I'm sure some of you moms who have transitioned from staying home to re-entering the work force (or even entering for the first time!) can attest, learning that I can't do alllllll of what I did as a stay at home mom, and alllllll of what I do as a full time worker has been difficult.

New Year's is usually my time to think about all of the things I want to do in the year ahead. My goal this year is to do some things for myself. As a parent of a child with medical needs, that can be an extreme challenge, as I'm sure you know. I've seen a particular post more times than I can count, from physical and mental health influencers, that reads, "True self-care is not salt baths and chocolate cake, it is making the choice to build a life you don't need to regularly escape from."* It sounds like a lovely notion, don't you think? Except, how do parents of rare kiddos do that? We can't. We don't get the chance to leave it all behind, sometimes not even for a few moments, to meditate (which mental health experts widely suggest, as if we have all the time in the world). Some of us aren't able to meal prep on Sundays because we are constantly caring for a child with pressing medical needs. Many of us can't drop the weight of a bad doctor visit, or burn the choking cloud of the unknown that hovers over us, or step out of the "limbo" stage, as a dear Rare Mom friend of mine calls it. We are bogged down by the incessant reminders that our life is not our own.

How, exactly, do we "build a life we don't need to escape from"? Another Rare Parent, whom I have never met, but follow and greatly admire, Kara Ryska (www.kararyska.com), posted something a while back that stuck with me. On her Instagram and her podcast, she discussed the resentment some parents can feel towards their special needs child. At first, I was put off by this idea, and then realized that at some point we all, as Rare Parents, have felt some sort of tug for a different situation. Not only for our children, but for ourselves. We love our Rare Kiddos without limits, of course, but we are also human and sometimes we have just...had enough. Enough doctor visits, enough of seeing our child in pain, enough worry, enough struggle, enough of feeling tethered to our homes, enough checking in on our child at school to make sure they are ok, enough interviewing babysitters with EMT experience, enough of feeling like the deck is stacked against us, enough of wondering when the other shoe will drop, enough of the crying, enough of all of it.

And so with 2023 approaching, I am going to try to do some things that will help me be a better, stronger me. That includes getting up early to read the Bible so that I start my day with some calm; practicing yoga for the first time to ground myself; being present with my three kiddos; spending time doing things I love (tennis, reading, golf, spending time with friends)---ALL so I can be the best advocate for Buster. Because no, I will never be able to truly build a life I don't want to escape from; the trauma of Buster's stroke, brain surgery, cerebral palsy, and never ending doctor visits will still be background noise. But hopefully I can orchestrate more harmony around it all if I commit to keeping myself a priority.

--M

*This quote, as far as I can find online, has been attributed to author Brianna Wiest; however, many social media posts have used other versions.