Miggy: Hi Kim and welcome! Let’s start at the very beginning, do you know how your parents first learned about your diagnosis and how they first felt? What, if anything, do you remember about those early years and how would you describe your childhood? Looking back now, do you have a different view of how those early years have shaped you?
Kim: It was obvious to my parents when I was born that something was terribly wrong. I was blue, not breathing, and the doctors noticed a sac (the size of an orange) on my spine. A specialist told my parents that i had Myelomeningocele (a form of Spina Bifida). Myelomeningocele is a congenital defect of the spine in which part of the spinal cord and its meninges are exposed through a gap in the backbone). I was whisked away to Children Memorial Hospital that night and had surgery to close my back. About a week later I had surgery to place a shunt to relieve pressure from fluid on my brain). My parents were very scared because their first born child was born without a disability.
My early years were rough. They mostly consisted of going to multiple different therapies, doctors appointments and surgeries. I have had 74 surgeries/hospitalizations in my life and most of them were when I was younger. I think like most young kids it was very hard for me to grasp the idea that even though the many surgeries, hospitalizations, and therapies that I went through hurt/were scary, they would actually be saving my life in the long term.
Looking back my view of how those younger years have shaped me have changed greatly. I’m now living on my own (with the help of a wonderful caregiver) with a roommate. My confidence has grown immensely. I’m able to manage my own medical care and I’ve become a lot more independent.
Miggy: Can you tell me what your family life was like growing up? Did you have great support from your family and siblings? Was there anything you wish they would have done differently?
Kim: My family life growing up was pretty good. We went on a lot of family vacations. My parents were always supportive. They were great “advocates” for me when I was too young to make decisions on my own. When we were younger, my sister, Lauren (who is two and a half years older than I am) weren’t that close. I think that she was sad because whenever I had to have surgery and my parents wanted to stay with me, Lauren would have to go to our grandparents, who lived in another state. On the other hand, my mom recently told me the story of how when we were younger, my sister would push me in my “star car” under a tree on the side of our house. Then we would “secretly” eat Oreo cookies. In college Lauren volunteered for AIDS hospice. Because I had so much medical stuff going on, she was very compassionate with the people whom she worked wit. These days Lauren and I are best friends!
My brother, Alex (who is nine years younger than ! am) have always had a really close relationship. He is the person who I usually end up talking to a lot when something is bothering me or if i need advice . Or if I just want to “vent”. I remember when we were a lot younger one of his friends asked him, “Why is your sister in a wheelchair?” Without a second thought Alex said, “Cuz she can’t walk… stupid!”Miggy: Ha! I love that answer. I know I speak for a lot of special needs moms when I say I worry about my daughter being bullied for her differences. What was life like for you socially growing up? Were you ever bullied? If so, how did you handle it? Do you have any advice for special needs moms in understanding and dealing with these sort of situations?
Kim: I wasn’t necessarily bullied, I was more ignored. Especially in high school. My home room for all four years consisted of the same girls. All of the other girls interacted with each other but just only one or two of the girls even acknowledged me. I remember going to my high school graduation “after party.” Everyone was having fun dancing/celebrating and I was alone in the corner. It hurt a lot seeing everyone else have fun. My advice for special needs moms in understanding and dealing with these sort of situations is to listen to your child. Let them know that what other people think about them isn’t necessarily true. But it’s how they feel about themselves that matters the most.
Miggy: Could you talk a little bit about accessibility and the role accessible (or non-accessible) spaces have played in your life?
Kim: There have been times in my life where people wouldn’t change to an accessible venue when I was involved. I was an active member of a Junior High church group which decided to meet in an inaccessible room on the third floor they called “The Upper Room” because it was cozy and, well, Jesus met with his disciples in an “upper room.” What could be more Christian than that? But the only way I could get there was if someone carried me up the steep, narrow stairs. This was really humiliating. I wanted to support my friend, but they sure weren’t supporting me!
When I was in high school I was required to take Home Economics. It was on the fourth floor to get to the class I had to take an elevator and a lift. For one whole semester the lift was broken. Since most of the class work was cooking my teacher and the principal decided that the class couldn’t be moved, so I had to sit outside the classroom and do “photocopied worksheets.”
Miggy: As an adult can you tell us how your disability affects your day-to-day life? How has it changed over the years.
Kim: As an adult I think my disability affects my life most because I don’t have a job. I cant hold a job because my health is unpredictable (i.e hospitalizations and bed rest). Also I have limited physical ability (the use of only one finger on my right hand and I fatigue easily). Although, I believe that I would be a great asset somewhere!
Miggy: Lastly, is there anything else you want people to know about you, your life or disability in general? If you could give any advice to mothers with physically disabled children, what would it be?
Kim: Whenever I go though a hospitalization/rehab, even though it might be hard, I always try to keep a positive attitude. I just tell myself that the doctors/, nurses, and therapists are doing what they think is best for me at that time and I put the rest in Gods hands. Over the years I’ve made a big effort to make friends with my therapists. I tend to use the vocabulary of the doctors and therapists so that I can understand what they are doing and to be a part in the “decision making” in my health plan. I’ve been going to a personal trainer, whose name is Eldin, since 2015. I go three times a week. We work on strength training, heavy weights, and even boxing!! He has helped me a lot in my recoveries from many surgeries and hospitalizations. Lastly, the great support of my family and friends is huge! It’s a great feeling to know that there is always someone on my side (most of the time). I don’t know how I would have gotten through all of the surgeries/hospitalizations etc. I’ve gone through without the great support of my family and friends!
Thank you, Kim , for sharing your story. This was wonderful to read and I also adore your tenacity.