Somehow I now have a ten year old. It’s hard to wrap my head around. This post started many months ago as the 10 Lessons I’ve learned in 10 years of parenting a child with disabilities, but I kept getting stumped or going off on a tangent. Parenting looks nothing like I had envisioned it, instead of ballet recitals, soccer practice and sleepovers it’s therapy appointments, bloodwork and way too many seizures. But it’s taught me a lot!
I’ve learned, I’m not the person I used be, the new person I am is who I was always meant to be. I’ve learned that with the title Mom also comes, advocate, nurse, teacher, chef, and protector. I’ve learned kids, all kids, are far more resilient and adaptable than adults, they go blindly into the unknown without fear or hesitation. I’ve learned epilepsy is a beast that doesn’t discriminate, taking from the young, old and everyone in between. I’ve learned a good therapist (speech, OT, PT) and teacher will not only change your child’s life but yours as well. I’ve learned comparison is the thief of joy, only compare your kid to themselves. I’ve learned that people are mean, not accepting of those that fit outside of the social norms, and girls are the worst. I’ve learned ableism exists, having experienced it (as a parent), I can attest it is nasty, antiquated and time for change. I’ve learned inclusion is a mindset but it is also a right, change your mind and everything will be right. I’ve learned there are people who will open their hearts, arms, minds, resources and homes on a moments notice. I’ve learned no one and I mean no one will advocate for their child like a mother, except for another mother to child with disabilities. I’ve learned empathy is a learned skill, study up. I’ve learned there aren’t enough boxes to check and I don’t want my child to fit in one anyway. I’ve learned life throws punches, you can bob and weave, but still get knocked down, dust yourself off, get back up and fight. I’ve learned grief and gratitude can coexist. I’ve learned sharing your story is cathartic but also allows others to heal. I’ve learned I don’t need a medical degree to know what the right plan of care for my child is. I’ve learned disability does not mean inability. I’ve learned that the path my child will take is different than my own and that’s what makes it all the more beautiful. I’ve learned my 10 year old is far braver than I will ever be. I’ve learned sometimes the answer is to put the windows down, turn on your favorite song and sing at the top of your lungs (thank you Reagan, and Journey).
I’ve learned, I’ve grown, I’ve evolved, I’ve redefined my definition of success. Most importantly I’ve found joy in motherhood. A path I never thought I wanted to take turned into the journey I needed. I am softer, yet stronger, more outspoken yet not as brash. More empathetic, yet I don’t have time for any of your bs. Motherhood over the past ten years has taught me a lifetime of lessons. I’m thankful for each and every one of them, but most of all for the kid that made it all possible.
Rea of Hope 