On Mondays, the York News-Times is gracious enough to lend me this space so I can ramble on, generally about politics and occasionally about topics far removed from that cutthroat arena.
Today is one of those days.
Thirteen months ago I wrote about Baby Maddie, born early in 2010. Many of you often ask about her. You ask that I update you once in while, which says a lot about our News-Times readers and our community. For those who are new to this space, well, let me swallow the lump in my throat and tell you about Baby Maddie.
She gasped to pull air into those tiny lungs. Two small holes in her heart put in question whether she would make it through her first day. This newborn peanut of a little girl fought like a warrior and made it through her first night and into the morning.
It was a cold morning, the sky a dark grey, and the news that came shortly after was equally gloomy. Baby Maddie had a little something extra. Every cell in her body had not two chromosome 21s like most of us, but three. Baby Maddie was born with Down Syndrome.
As grandparents of Baby Maddie, we were devastated. Not only for her, but for her parents, our daughter and son-in-law. Our fist concern was if Baby Maddie would even make it, but as each hour passed, it became clear this precious little girl was a fighter.
Now, a little over one-year-old, Baby Maddie is still fighting. My wife Josie and I know why, if genetics have anything to do with it. Baby Maddie’s mother, our daughter, Jamie (Awtry) McClintic was born with severe hearing loss. Unable to speak and fitted with hearing aids at age three, Jamie began a years-long journey of speech therapy. At age five she was denied public school because of her disability, but we fought to have her mainstreamed anyway. Making up for the loss of hearing, we watched an indomitable spirit take over as Jamie showed a remarkable willingness to learn.
We remember so well the first day she heard the rain. She had never heard it before. Or the look on her face as a robin chirped. Day after day we would take Jamie to Michigan State University for testing. She knew everybody in the audiology department and they all knew her. They asked Jamie if she would be willing to be a test case so they could learn how to better diagnose infants with hearing loss. Little did we know then, but Jamie’s willingness to help infants, even at her early age foreshadowed what was to come later.
Following years of speech therapy, Jamie’s spirit and ability to learn carried her to heights we could of never imagine. One of our proudest moments came as we sat in the audience and watched her accept her Doctor of Occupational Therapy Degree from Creighton University. It was at that point she dedicated her life and career to working with disabled children. They say God works in mysterious ways, but it’s no mystery as to why he gave Baby Maddie to Jamie and her husband Scott.
Maddie is simply remarkable. No, the health issues have not gone away and never will, but this precious little angel wants to learn. Unable to speak, just as her mother once was, she is discovering sign language. I wish you could see her when she learns a new word.
We learned a new word too. Chromosome 21. Appropriately, next week on March 21, we celebrate National Down Syndrome Day. I am sure, like you, it seems like just another one of those national recognition days, and why not, that is exactly what it is. But to me now, it is a very special day. It’s a day we can raise awareness for those who have the “extra 21”. They are very special people with very special needs, none greater than the need to be loved.
So Baby Maddie, be aware of this. PopPop and Sito (Grandma) love you. We can hardly wait to walk hand in hand with you. You’ll be in your favorite color, pink, and I’ll be wearing a shirt with my new lucky number on it. You guessed it. The number 21!
Next Monday is National Down Syndrome Day. If you are of mind, say a little prayer on March 21st for Maddie and others like her. I ran across a prayer from a mother of a Down Syndrome child the other day. I’m unable to find the author’s name, but I am printing it anyway.
Today I say a prayer for the world that I live in. I pray that my daughter grows up surrounded by love. That the world grows more accepting and tolerant. That people see her for the wonderful girl that she is. I pray that people see a beautiful little girl with brilliant sparkling blue eyes that are the color of the deep ocean. I pray that people see a smile that lights up a room. That her milestones and are celebrated and that others have patience with her delays. I pray that people see a little girl, then a teenager, then an adult, NOT a diagnosis. That she will not be sold short before given a chance. That she will share the gifts that God gave her and be able to serve others and not just be served. I pray that she grows up to know that God loves her and HE created just as she is, and she is a work of divine art. I pray that when she acts up that people around her see a child acting like a two-year-old, or a three-year-old, etc. and not attribute everything negative to Down Syndrome, it’s insulting. I pray that I am a good parent and give her what she needs; LOVE, Peace, joy, therapies, patience, as well as discipline and fairness. I pray that I listen to what God tells me and I do right by her. Lord watch over us all and keep our eyes on you.
I thank the York News-Times readers for giving me the chance to tell Baby Maddie’s story. God Bless Baby Maddie and her parents, although I believe HE already has.