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I have absolutely no idea what I’m doing.

Parenting. I’ve been doing it for 13 years and I still have absolutely no clue if I’m doing it right. My son Carter is officially a teenager today, so I thought it would be fitting to share how I’ve managed as a parent with a disability and the effect its had on my children.

Let’s start at the beginning. October 29, 2008. I had spent the last 10 days in the hospital because my water was leaking and I needed to be monitored. That morning, the doctor checked to see if I was dilated, said we were good to go, and I sent my husband off to work. Less than an hour later, I began feeling really weird. My blood pressure spiked and before I could tell the nurses how bad my head was hurting, I began seizing. Everything after that is a blank for me.

I woke up in a recovery room with a horrific headache, not knowing that I had given birth. My husband and mom had to explain what happened several times before it clicked in my head. My labor had progressed so fast, and because of my paralysis, I couldn’t feel exactly what was wrong. I mean, don’t twist my words, I was in excruciating pain, but I had no idea what was going on. By body experienced Autonomic Dysreflexia (please don’t make me explain what that is. I don’t have that kind of time on my hands. Google it.) which caused my blood pressure to reach what should have a been fatal level; and I had my first and only seizure. Carter John was born 8 weeks, 5 days early. He weighed 3 pounds, 14 ounces. And I’m lucky I lived to meet him.

The weeks ahead were spent traveling to and from the NICU. My body had been through the wringer and I wasn’t really able to slow down. 14 days later, I brought my baby home. That’s where the real challenge began…a challenge that I still accept every day. 

Being a first time parent is hard, but doing it with a disability is an entire dumpster fire. Not only did I have no clue what I was doing, but I knew nobody who had experienced what I was going through. I was literally winging it. Pushing a wheelchair while holding a baby was a skill that took me forever to master. Just going from the living room to the kitchen table to change diapers (yep, I changed my baby on the very table I served dinner to my guests on.) was a literal balancing act. But I did it. Carter and I learned how to navigate life together. That’s a bond we still have today.

Just over a year later, I found out I was pregnant again. I was terrified of having another nightmare delivery. I ended up getting a bad UTI in my 3rd trimester which required a PICC line for antibiotics, but other than that, everything went pretty smoothly. I had Brooklyn Rose at 37 weeks via c-section. She was 5 pounds, 5 ounces…and sassy from the minute she took her first breath.

Why am I telling you this? Because as people with disabilities, life is scary and unpredictable. Things that are a breeze for able-bodied people can cause us so much stress and despair. But we must move forward. We can’t let our circumstances control our dreams. All I ever wanted in life is to be a mom with her hands amazingly full. When I was in my car accident, I promised myself I would not give up on that. And even after a horrific delivery the first time, I trusted my doctors who said they would do everything they could to keep me safe so I could complete my family. 13 years later, I am living the life I always wanted. It may look a little different than I dreamed when I was a little girl playing “mommy” with my dolls, but that’s ok. Everything I’ve been through has made me the parent I am today. And even though I still have no clue what’s going on half the time, my children are kind, accepting, loving little people, so I must be doing something right. I wouldn’t change any of it for the world.

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