The Incredible Work that Mom's of Kids with Disabilities Do
When many soon-to-be parents are asked, “What gender are you hoping for?” many of them will respond with “We don’t care as long as he/she is happy and healthy.” But what happens when the baby isn’t perfectly healthy? The reality of having a child with a disability is something that no one expects to happen to them. So when it does, many people are caught completely off guard, and frankly need time to morn the loss of the life they thought their child would have.
For my parents, having a child with a disability was not something they thought would ever happen. So, when two of their three children ended up with a diagnosis of Retinitis Pigmentosa (or RP) they were not even sure where this condition came from. Neither of them had characteristics of the disease themselves, and it wasn’t until decades later did they confirm
their carrying of the gene through genetic testing.
Me, Brenda (mom), and Lindsay (sister) on our latest girls trip
My sister and I were both diagnosed with RP in childhood. It was actually a few years before doctors were able to correctly identify which retinal condition we had, as our symptoms did not look like the symptoms you would normally see in an RP patient. Despite the fact that my sister and I both began to lose our vision slowly from the age of six on, we have led fulfilled and successful lives. However, much of the credit for our success I feel is owed to our parents, and my mother in particular for the perspective she took regarding our disability. It was this perspective that helped my sister and I push through hard times and maintain the determination to strive for our goals.
Throughout my childhood my mom used to tell me, “You know Lauren, in life everyone will struggle with something; and lucky enough for you, you already know what your thing is.” As simple as this sounds, it made a true impact on me and how I viewed struggles in life. Many times, throughout my childhood and teenage years I would become frustrated with the idea that it was so unfair that I was visually impaired, while no one else around me was. My visual impairment meant that many sports (mostly ones involving balls) were inaccessible to me, and I would never gain the teenage independence of driving my own car. While these situations were in fact irritating and even overwhelming at the time, these words of wisdom from my mom kept running through my head throughout each challenge I ran into.
It is my personal belief that one of the greatest limiting factors for a child growing up with a disability is their parents approach to life for their child, and their expectations for what their child is capable of. My parents did not accept my visual impairment as an excuse for anything, and they taught me to find a way to do what everyone else was doing even if I had to accomplish it differently. I have had the opportunity to accomplish quite a bit in my lifetime, including the current completion of my doctoral degree in Counseling Psychology. People often remark that what I am doing is impressive or inspiring, and I should serve as motivation to other people with disabilities to work hard to achieve their goals. While I don’t see what I am doing as a visually impaired person as anything to write home about, I know I would not be where I am today if it were not for my parents and my mom in particular supporting me.
My mom has always valued independence and a go-getter attitude for herself and her girls; disability or not. That is why on this Mother’s Day weekend I wanted to take the time to share with you the outstanding work that she has done. Parents of children with disabilities will work harder and longer than any parent of a child without disabilities, and they deserved to be recognized and appreciated. I believe that God knows what He is doing when he gives a parent a child with a disability; understanding what they can handle and what they are capable of. It is more work than would be expected and requires great sacrifice; but I believe He knew exactly what He was doing when he picked my mom out for this incredible job. So, on this Mother’s Day, I want to express my sincere thanks and gratitude to my mom, and all the other mom’s out there who are raising children with disabilities. You guys deserve it!