When I think of Caregiver Awareness Month and how it relates to a spinal cord injury, I’m truly grateful. It allows me a moment to sit back and be so very blessed that with my injury level, C6/7, I don’t need help with my personal care.
I was injured July 27, 2003. I was in VGH until August 29, 2003 and GF Strong until Feb 10, 2004. The care I received at both were incredible. When I came home I wasn’t quite 100% independent and the way I had things set up for showering and going to the washroom required me to have a caregiver. I had a few, but then asked if I could consistently have the same one; the help someone with a spinal cord injury needs is extremely personal. If you have a SCI or have someone in your life with one, you know exactly what I mean. So Kristin became my main helper and she knew my goal was to figure everything out and graduate from needing care. She was so patient with me – instead of jumping in when I struggled, she waited for me to give her “the look” or say something. And when I was ready, set up with new systems – a shower bench and raised toilet seat – and I felt safe and comfortable, I no longer needed care. But, I will forever remember and cherish the bond, connection, love and respect we had for each other.
I’ve been 100% independent ever since and anytime I feel frustrated I stop and think how lucky I actually am.
My parents have always been incredible too, learning how to help with car transfers and be patient as I learned to do them alone. There were many times I slipped in the gap between my chair and the car and moments I got frustrated and yelled. I will always remember the first time they took me to watch soccer with my friend Jaimie. I was still in GF Strong and very newly injured. My parents were helping me into my chair from my mom’s car. They were sweating and so nervous they’d hurt me, that my dad wanted to take the door right off. Looking back now it was hilarious! I think he thought we’d just do drive thru for the rest of my life. Ha ha!
I want to also add that GF Strong did an amazing job teaching me how to “direct my care” and to this day I use that when I ask for things that are out of my capability. That doesn’t mean I love asking for help, it’s a constant struggle, but I’m grateful for the people in my life who make it easy for me.
When I was about 6 and a half to 7 months pregnant, I needed a bit of help safely getting to my shower bench, so my husband, Brandon, or my mom, Jackie, would help me and in that time I was humbled again. It brought me back to my newly injured days. And about a month before I had my daughter Rylee, I couldn’t wheel up the ramp on my van because my belly was in the way, so that was it for driving. I can say that going from completely able bodied at 20, to fully dependent, to regaining independence for 16 years, to then needing help again was a very interesting thing. Hard to put words on it, but definitely makes you slow down a bit and reflect.
When I found out we were having a baby I knew I’d need to get a nanny and I knew my mom would not want to do that. She’s already had her kids and grandparents deserve to be grandparents. I will be honest, I was nervous to tell my mom because I knew I would need help with the baby Monday, Wednesday and Friday while I did my washroom routine, showered and got dressed. I had the perfect person in mind, so she was the very first person we told we were expecting. She would be our fairy Godmother and help with Rylee while also helping with the house too. When I was in the hospital after Rylee was born, I found out she couldn’t commit to three days a week. Panic hit me and I had no idea what we were going to do. She said she could do Monday’s and Wednesday’s till December and when December came around, we pretty much begged her to stay for Monday’s because she’s seriously amazing! Rylee loves her so much (so do we) and she is an incredible human.
Going back to when I was in the hospital, brand new mom, and knowing I needed a Friday nanny, Kaci popped into my mind. Her aunt is one of my very best friends and she works with infants and toddlers and gets Friday’s off. She said yes! We got home and she was Rylee’s very first nanny and the connection they have a year later is amazing. Rylee is one lucky girl! We have also been super lucky to have my long time high-school friend Tara and her daughter Kiana help us out December 2019 to March 2020. My sweet friends Amy and Gina as well as my niece Breanne have filled in too. Gina would give us bi-weekly date nights up to March. Breanne gave us our very first night away together since becoming parents. Amy has given me a break during the day by taking Rylee out for a walk so I can eat and catch up on work.
We are so grateful for the help and love we receive. It truly takes a village to raise a quad mom and a Rylee Ray. And then, as I call it, Covid launched. Quarantine – no one in, no one out. Brandon took about a week off but is deemed essential, he owns a heating company, so I needed help. My mom saved the day, as she has for my whole life. We would have been lost. My mom is amazing. She comes with meals or treats, rarely empty handed; we don’t expect it but that’s just who she is. From March -June 2020 my mom did the mornings of my washroom routine, in June she did two days, and as of July she did Wednesday’s. But when we had a nanny with a cold or possible exposure, she’d jump in to be here for us. We honestly would have been lost without her because we are in a time where we can’t have just anybody.
While I do my personal care I can be rest assured that Rylee is in amazing hands and household chores and other tasks are being taken care of. The weight that gets lifted off my shoulders is huge and indescribable. I call my nannies the dream team, they are all angels on earth and we cannot thank them enough. Caregiving comes in all forms and I’m so lucky that Rylee gets to grow up with all these ladies in her life. The most beautiful part is seeing the bond between each of them and Rylee; it is the biggest gift of all.