Hellobee

Hello! I am very excited to be joining Hellobee as the newest blogger. I have never really seen myself as a parenting blogger before; I write primarily as a frequent contributor on The Mighty, where I write about my multiple chronic illnesses. But as I have gotten deeper into the world of parenting and disabled parenting–my daughter is almost 5!–I have realized there are few voices on mainstream parenting blogs, outside of the chronic illness blogs I have cocooned myself in, for chronically ill and disabled parents. I have come to Hellobee because I want to be that voice and to add a new parenting perspective.

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 dinosaurs and dolls 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, her dollhouse, and her garage sale American Girl Doll. 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.

About a month and a half ago, we did a whirlwind move 3 hours north to my husband’s hometown so we could have more family support, and also so I could begin a new job working in an educational nonprofit. I love my job and am extremely passionate about the work we do for kids who need it.

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.

Why Mrs. Snowflake? Well, for one, I let Snowy choose. I was divided between this icon and another one, but Snowy loves winter, snow, and especially the holidays! “Christmas is coming, you have to choose the snowflake, mom!” It was that very day that we had a snow day, and Snowy, her doll and I had a wonderful time playing in the snow. And it’s fitting: winter is my favorite season, even if it’s awful on my joints, and I started decorating for Christmas right after Halloween.

Thank you for having me at Hellobee, and I’m excited to “meet” you all and share this parenting journey with you!