As a person with a disability, I can admit, I probably don’t worry about my disability as much as my mom does. All a mother wants to do is to make sure their child is safe and happy. Often, a parent is so busy trying to “fix” their child with a disability that he or she neglects to see, he or she is ok with their self. Only when a parent accepts a child for who he or she is, will things fall in place. Welcome guest-blogger and my friend, Cindy Carusone. She shares her journey with her son, Kyle, and how he changed her perspective on life, happiness, and love.
Shari
There are many things in life that can throw us down a different path than expected. I have had many in my life, but the most rewarding, challenging, and frustrating path, is the one with my son, Kyle. Kyle came into this life with a preconceived notion; that notion, a healthy “normal” boy. But really, what is normal? The definition of normal is “the usual, average, or typical state or condition”. Well, Kyle by far is not “normal.” And who wants to be normal anyway?
At the age of 18 months, Kyle was diagnosed with Fragile X Syndrome! When the Pediatrician mentioned those words, I thought dear GOD are his bones going to break? No bones breaking, at least from Fragile X, but it is a change in your X chromosome. I‘m not going to bore you with all the Medical Terminology, but in a nut shell; Kyle is special guy with some disabilities.
There were so many expectations for Kyle; especially coming from a family of all girls and I felt as if those expectations were no longer attainable, it was a difficult time. I went through all the emotions of Why Me, It’s My Fault, It Isn’t Fair, and why did GOD do this to us and Kyle? But you know what, I finally realized that it just didn’t matter, because Kyle was living and enjoying life on his terms.
It took many years, like at least 29, for both myself, and my husband to realize that Kyle is happy when we let him be him and not push him to be “normal”. Kyle will tell you when he is done visiting, when he needs to be alone, and when he wants to interact. One thing I have learned from being a parent to a child with disabilities is that it is OK for him to be different and make his own way through life!
Kyle’s quality of life is the most important thing in this world to us. If that means for him to watch his favorite ME TV, enjoy his favorite pizza and snacks, or just to chill out on his Futon (which he calls his crouton) then as his parents, we will support him in every way we can.
Not all persons with disabilities have the resources Kyle is given. He only receives Social Security and Food Stamps, so it’s up to me and my husband (extended family) to offer him the “extras” needed to meet his quality of life. I only wish that all persons with disabilities can have the opportunity to receive what is needed so that they can have the best life ever!
Kyle is a gift, a gift that will keep on giving beyond my lifetime. He offers unconditional love and best of all his humor will make you smile, especially on a bad day!
Keep on smiling Kyle! We all love you!
Good life lesson, “Enjoy your children as they are”!
You guys are amazing parents and unrelenting advocates for Kyle’s resources! Kyle is such a joy to be around, we are proud to be his family.
We love talking with Kyle over the phone every day. He cheers us up and tells us what’s the latest in his life, on TV, favorite programs, ballgames, races, etc. He has a good sense of humor too!