Raising a child with a disability can be both extremely stressing and challenging, not to mention the financial impact it has on the family as well. It can bring a family closer together or tear them apart. In my case, it brought us closer together. For privacy reasons, I’m not going to mention my daughter’s name.
Both my husband and I was blessed with a 14.5 oz little girl. I know what your thinking, and yes she was 14.5 oz. Her head was the size of a golf ball and the hospital had to order special diapers. During the time that my daughter was born, you didn’t hear about to many premies being born that small, so of course the doctors had concerns. We were told of all the complications that she would face over the next few months, and throughout her life, but we knew God had a bigger plan for her. She was only in the hospital for a couple of months, and off the ventilator in seventy-five days. Her remarkable progress while in the hospital again is a true testimony of God.
When discharged from the hospital, she came home with oxygen and a heart monitor. She had daily visits to the doctor’s office for monitoring. It took both my husband and I to get her to these appointments because of the equipment that was attached to her. We both received endless nights of no sleep making sure that she was okay. I look back, and think to myself when did we sleep. The first few months went by so fast. It consisted of doctor’s appointments after doctor’s appointments.
When she was six months old, they started her in physical and occupational therapy to address some of her developmentally delayed issues that were going on. I want to give credit to her physical therapist at the time of her starting physical therapy. If it wasn’t for her teaching us to treat her as if she didn’t have a disability, then she wouldn’t have made the progress she has. She told us that she doesn’t know that she has a disability, so stop getting the toys for her and make her get them herself.
At her six month followup, they noticed that she was sitting to one side. Her primary care doctor thought it would be wise that she be seen by an Orthopedic doctor. We saw the Orthopedic doctor and they discovered that she has Scoliosis. The curvature of her spine was so severe, until they could not treat her in the state of Colorado. Her Orthopedic doctor referred her to Shriners hospital in Salt Lake City, Utah. While at Shriners, she had several procedures done. Each one seemed hopeful, but the curvature was not getting any better. As a mom, I felt like I was letting my child down, because there was nothing I could do to help her. Later, she was referred to Primary Children’s Hospital in Salt Lake City, Utah for a new surgery called Vertical Expansion Prosthetic Titanium Rib (VEPTR) expansion.
She had her first VEPTR expansion at the age of five. She would have to go every six months for surgery. The emotional and financial impact it had on our family was hard. Thanks to the Ronald McDonald house in Utah, we were able to stay there each time we went. I have to give credit to my little angel, she is a fighter. She recovered well from each expansion. Overall, she has had close to thirty surgeries by the time she reached adulthood.
I believe that raising a child with a disability takes a lot of time and patience. There are a lot of resources out there that can help depending on the nature of the disability. I am so thankful that we had a network of doctors and family, as well as community resources to help us through this. She is doing well now, and has defeated all odds set out against her.
My daughter had the odds stacked against her. We were told that she would never walk and have many other deficits. She has overcome them all. She was never placed in Special Ed classes. We raised her to believe that “can’t” is not in her vocabulary, and that she could do anything she wanted to if she put her mind to it.