MDA Ambassador Guest Blog: Why I am Grateful for My Caregivers

Jennifer Cruz and her mother

Jennifer Cruz is 36 years old and lives in Broken Arrow, OK. Jennifer has Ullrich congenital muscular dystrophy and uses a wheelchair and noninvasive ventilation. She loves spending time with her family and listening to music. Jennifer also enjoys doing diamond arts, a form of art that involves creating a picture or design by applying diamond-shaped rhinestones to a canvas. 

Growing up, my momma was my main caretaker – and she still is to this day. She taught me that I can do anything I want, I just may do it a little differently than other kids. She has always made sure I did all of the things that I wanted to do, just like my brothers did. When I wasn’t accepted into the Girl Scouts because of my disability she found a co-ed service and learning organization, Camp Fire, which I was part of from 5th grade until I graduated in 12th grade. I was the only wheelchair user to graduate the organization, receiving the Wohelo award, similar to an Eagle Scout award, for leadership and service to the community. My mom has always been supportive of me going to Camp Fire, being part of the MDA community, and participating in activities at school. I was in a leadership program for disabled teens the summer of my senior year. My mom made sure I could go and learn as much as I could, so that when the time came, I could be an active adult knowing how to handle medical issues and how to handle home health issues as well. I have always looked up to my momma. She has taught me how to be a strong independent woman.  There has NEVER been a time in my life when my momma wasn’t showing support or showing me how to be as independent as possible. She has taught me that I can do anything I want, disabled or not. My life is up to me!!

My mom has a full-time job but still comes home and takes care of me and provides everything I need. She always makes my life as normal as possible. Thanks to her, I can go out in the community and go on vacations. I was able to visit Hawaii for the first time this summer and enjoy all of it. We went to the beach and saw a lot of great sights. It was one of the most amazing places I’ve ever been. But what will forever stand out is our family tattoo! We each had Ohana, which is Hawaiian for family, tattooed along with a flower. It shows that our family is always connected and there to support each other, that nobody will be left behind or forgotten. 

Jennifer Cruz on a flight with family

My momma has always planned our trips. We talk about where we would like to go and then she makes it happen. For most of the trips we take, we drive. My momma has become a master at loading everything we need into our van, including my chair. She calls it Tetris with medical equipment.

Going to Hawaii was a big trip for us. We knew that it would be a long plane ride, but it was worth it. I hadn’t flown in a decade, but we had another trip planned to go to Dallas before Hawaii. My mom decided we’d fly to Dallas instead of driving to make sure I could handle being transferred onto the plane and could sit comfortably during the flight. It was like a trial run for our trip to Hawaii. We were lucky that my brother and sister-in-law were with us, too. They helped me board and transfer on the plane.

I am also extremely lucky that my sister-in-law is able to be my caretaker while my momma is at work during the day. She comes over every day to help me start my day and provide care for me. We have so much fun listening to music or visiting friends I’ve made from camp. 

Jennifer Cruz and her mother

They’re both able to get paid to take care of me because of a state funded program. I am on a waiver that’s called a Medically Fragile Waiver. The waiver provides personal attendant hours for during the day, nighttime, and weekend. If it wasn’t for this program, I don’t know how I would afford to have a caretaker at all while my mom is at work. 

I am extremely grateful for my family and the amazing job that they do as my caretakers. If I could celebrate them all the time I would!