Hello loyal readers! As I attempt to write in this space more regularly, I have decided to write more about being a parent: specifically, about being a chronically ill/disabled parent to a (so far) very healthy, active child.
I admittedly have not written much about parenting here. I have one parenting related post, about what I would tell my chronically ill self before pregnancy, which was also posted on The Mighty. But I’ve never deeply delved into writing about the greatest current reality of my life, which is being a chronically ill working mother.
The reason I am starting to write about these realities is because I feel like my stories could add an important voice (a chronically ill, disabled voice) to the multitude of writings about parenting. I know many wonderful parents who live with chronic illness and disability, but posts focusing on that are largely absent from most parenting blogs.
I’m not much of a photographer, and I rarely share photos of my daughter on my blog, so these posts will be textual, more than anything. If you’re not a fan of this style, I encourage you to read another parenting blogger: there are so many great ones! But writing is how I best express myself.
I also will risk sounding one-note on this blog, as most of my posts will center around chronic illness parenting and its many different dimensions. This is because I know many wonderful parenting bloggers who write about a whole lot of different parenting issues, but chronic illness parenting is my specific experience, and the one that tends to be under-represented amoung parenting blogs.
So a little more about me, my family, and my context to blogging.
My husband and I are both 27, and have been married a little over five years, together for eight. We got married right after we graduated college, and right before starting graduate school. We wanted kids someday for sure, but we had a five year plan before we would talk about kids: we wanted to finish grad school, get established in our careers, and maybe buy a house first.
Well, that five year plan didn’t even last five weeks. Less than a month after our honeymoon, the day we moved into our first apartment together, I found out I was pregnant.
My daughter, S, is now 4 and a half (she’ll turn 5 in January and is already planning her LOL doll birthday party). She has been the greatest source of joy and adventure in our lives. She is a total fearless ball of energy and passion. Her current obsessions are art projects, dinosaurs, and her dollhouse. Her overabundance of energy and inability to calm her body are the #1 thing that get her in trouble these days. She is also very smart and inquisitive, and we truly have great conversations.
However, despite S being our greatest blessing and never wanting to change our lives’ trajectory for the world, pregnancy came with some unique challenges centered around my health that never let up.
I’ve never been completely healthy. I’ve had migraines since elementary school and ovarian cysts since 8th grade, along with a series of other symptoms that all make sense in hindsight.
But pregnancy was definitely the sickest I’d ever been up to that point. I threw up multiple times every day, from six weeks until after I delivered. I was in the hospital multiple times: I had a threatened miscarriage at 13 weeks and almost lost her, and she tried to come early 4 times before she arrived at 37.5 weeks. I had severe back pain and was on bedrest much of the time.
I hoped delivering would bring relief, but unfortunately, it was just the beginning. Breastfeeding was extremely painful. My chronic cysts flared up like never before. I had the worst migraines of my life.
By the end of 2016, I was diagnosed with a number of incurable lifelong conditions, a number that continues to grow. I have Chiari Malformation, which is a brain condition, Generalized Hypermobility Spectrum Disorder, Postural Tachycardia, lots of allergies, chronic ovarian cysts, abdominal migraines, and probably some I’m forgetting. I sometimes need to use a wheelchair for my hypermobility pain and my tachycardia, especially at places like the zoo. I take many medications every day.
I am thankful to also be able to continue working, which I know is a privilege for a chronically ill person, but is also incredibly trying at times. I try my best to strike a balance. I have my Masters of Divinity in Youth and Young Adult Development, and work in after school programming, a field I love. I am starting at a new school and moving three hours away from our current location in a few weeks, so everything is really a whirlwind right now, especially with trying to keep my pain in check.
In the next few months as I delve into writing about parenting, I plan to focus on quite a few topics, most of them related to illness and disability and how it relates to parenting. These topics will include:
- Balancing career, parenting, and chronic illness
- Parenting while in graduate school
- Making time for creativity as a mom with chronic illness
- Moving with a kid and a chronic illness
- My pregnancy with undiagnosed chronic illness
- Privilege, chronic illness, and parenting
- Planning a family vacation with chronic illness
- My daily chronic illness parenting routine
- My only child and my chronic illness
- Planning with a child and chronic illness
I am excited to have the chance to write about my parenting journey, and hopefully to be a voice for and to speak to other parents that face similar challenges. And even if you don’t face chronic illness issues alongside your parenting, I hope I’m able to be a representative for the many that do.