A Mother’s Story: Raising a Special-Needs’ Child

“The Rainbow Connection”
By: Teresa L. Caprio

When I was a young, happy ambitious women starting out in the world, excited about getting married, having a career, and starting a family, I could never have imagined what my destiny would be. My mother use to say to me many years ago, “Remember, whenever you think you are going through this door of life you picked, there may be another one waiting for you that you didn’t expect.” Little did I know how right she would be, or what was still to come.

At my prime age of twenty three, I had a beautiful, healthy three-year-old little girl when my second daughter, Toni, was born. Toni was so welcomed by her older sister and loving family, and everyone was overjoyed with happiness! However, soon after Toni was born, I felt something was wrong with her because she just seemed different –call it a mother’s instinct, but I just knew. I had given birth to my first daughter a few years earlier and knew what to expect, and this was not the same feeling. Toni’s breathing seemed a little heavy, and she cried a lot, but everyone assured me that this all was normal, even the doctors. Still, I was convinced that something was wrong.

At home Toni cried incessantly, and feeding her was always a challenge. She wasn’t sleeping well, gaining much weight, and even her color was a little jaundice. I proceeded to take Toni to her regular check-ups with her pediatrician, always having concerns. I was usually told by her doctor that she could be colicky, allergic to milk, or just starting out a little slow and assured me everything was fine. I still had that uncomfortable feeling within. This proceeded for some time with me expressing my concern about Toni on a daily basis.
One day I took Toni to her regular doctor visit, and this time, it was all different. Upon his examination, he discovered a heart murmur and suggested we take her to a specialist. Soon after, we took Toni to a heart specialist, and he gave us the news that she had some heart problems that could be fixed with surgery. He also felt there could be other problems with Toni, including having a developmental disability as she got older. It was all downhill from there; I felt my young life was over.

Hospital and doctor visits became my daily routine and my life became tending to her every need. My family was very supportive, and, fortunately, my husband was with me every step of the way. That was what made this intolerable experience tolerable, and I don’t know if I could have done it alone, but even still, many mothers with special-needs’ children feel they have to carry this burden alone. There were many days that I felt I could not make it through one more day with the emotional up and downs; it became almost unbearable. Still to this day, I cannot believe what I handled at such a young age with so much responsibility. I keep on remembering a saying I once heard, “If you think you can do it, you can. And if you think you can’t, you’re right.” Also, you’d be surprised with what you do or how you handle situations when you’re really given no other choice – you just do what you have to do for your child.

My daughter, Toni, today has grown into a beautiful woman. She was never diagnosed with a disorder, but with MR (mental retardation). She is developmentally disabled, but can function in society with help just fine. She has been a better teacher to me and my family than we could have ever been to her. Toni has taught all of us many lessons in life, and we all believe she is here for a very special purpose. Without her I would have not opened my non-profit charity called, Rainbow Guardian, which provides services to special-needs’ children and adults just like her. Also, Rainbow Guardian’s Ranch (where Toni currently lives) is not only making a positive difference in her life, but the lives of five other females who I love and hold near and dear to my heart, just as if they were my own. Her older and younger sisters, and her father, all assist with the charity and we all continue to love, support, and stand by her side every day. I believe that we are all better people because of our experience with Toni, and how we look at the world around us.
One of my favorite writers is a woman named, Erma Bombeck. She has written many humorous stories and poems about the trials and difficulties in raising children in today’s world. One poem that was written by her is my favorite, it is called, At Wits End, and she wrote, “Somehow I visualize God hovering over earth selecting parents and instructing angels to make notes. In a giant ledger he picks parents of handicapped children and instructs the angels to match the parents and children. The angel is curious. “Why this one God? She is so happy. Exactly, smiles God, could I give a handicapped child a mother who does not know laughter, that would be cruel. She will never be alone, because I will always be by her side every minute of her life, because she is doing my work.” To me, that pretty much says it all.
We are a special group of people, and when we get together, there is a special bond we all share. Few words are spoken because we know exactly how we feel and what we are going through. If you have ever listened to the song, The Rainbow Connection, written by Paul William, song by Willie Nelson and many popular singers, it says what I feel. It’s a beautiful song and some of the words express the beauty of our special children. The words say, “Why are there so many songs about rainbows and what’s on the other side? Rainbows are visions and only illusions, and rainbows have nothing to hide. So we have been told and chose to believe it, that someday we will find it, the rainbow connection, the lovers, the dreamers and me.” The song has always pulled at my heart strings because of its meaning. I even named my charity after rainbows because they’re a magical miracle, and that’s how I feel about my daughter, Toni – she really is a miracle that happened to me. Again, like in the song, which says, “Who says that every wish will be heard and answered, so look to the morning star.” Some chose to believe it, and I am one of those people.
I will never stop caring for Toni, with all my love as her mother. This has been my destiny – my purpose – until the day I leave this earth. I choose to believe that there is a higher power – much bigger than myself, my daughter’s challenges, and my mission with Rainbow Guardian – that has got to be guiding me and my family everyday through this beautiful journey. If I can do it, and believe it, so can you.

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