Newsworthy: Everyday acts of kindness.
A new blog series highlighting the art of caregiving.
Photo narrative by: Teresa Celentano
My life, the life I thought I was supposed to have, was supposed to be simple. Quiet. Mundane. But that’s not what I got. I got a roller coaster ride of a life instead. A wind-swept, turbulent, upside-down, loop-de-loop of a life. And the truth is, now that I’ve lived this life for quite some time, I see how I’ve grown as a person and I see how I never could have become the person I am today without riding this roller coaster ride of a life. It’s the toughest, sweetest, most rewarding life I could have had!
My son, Thomas, was born with a rare genetic disorder: Ataxia-Telangiectasia. The frequency of A-T is only 1 in 100,000 births. It attacks children, and, in addition to the high risk of cancer, the compromised immune system, and respiratory system concerns, it also causes a progressive loss of muscle control, including their eyes, their arms, their hands, their legs, and their feet. It means their words are slurred, reading is difficult, playing is difficult, and dressing and feeding themselves is difficult.
Navigating their world is a challenge, and my world is filled. It’s filled with love, laugher, smiles, hugs, kisses, a lot of trials and errors, and patience. Lots and lots of patience.Thomas has always been an early riser, so up we go right around sunrise! Richie helps him shower and dress while I pick up the bagels and set the table. I always try to sneak around the house and complete some household chores as quickly as possible, but Thomas is not one to wait for his bagels! He comes downstairs on his “stair chair” and chats the whole way down! A typical weekend with Thomas starts out with his favorite: Bagels!! And don’t forget the Lox and Cream Cheese spread!! Thomas has accepted that there are certain things he can’t do for himself, but that doesn’t stop Thomas from enjoying life! He instructs us as to what his needs are at any given time.
“More cream cheese, please!” “Another bite of bagel, please!” “Drink, please!” And when Thomas is done with breakfast off he goes into the living room to play his video games. “Come on, dad, I’m ready!” While I clean up I can hear the two of them intently playing on their video games. It’s one of the few things Thomas has learned to master with confidence, conviction, passion, and fervor. He can play for quite some time on those games! It gives us peace of mind to know he’s happy and believes in himself. Thomas has never ever considered himself handicapped, and he has clearly and enthusiastically stated so on several occasions! “I’m not handicapped! I just need this wheel chair to help me walk!” or “I’m not handicapped! Give that space to someone who needs it!” Ronan, our service dog, has been an important and inseparable part of our lives for almost 3 years now. The process of receiving a service dog is a long and arduous one, but it is very well worth the wait and preparation. Ronan has miraculously given Thomas the courage to know he is important – that he has a job and a responsibility and that someone needs him instead of the other way around. It was great for Thomas to see that someone was now dependent on him. Ronan assists Thomas with things he can’t do for himself, such as picking up what’s fallen, opening doors, opening drawers, and tugging and pulling items across a floor. Ronan also knows our names! With one quick “Get Alysa!”, “Get Daddy!”, or “Get Mommy!” off Ronan goes to grab our attention! He pokes us with his nose or just stares at us and we know Thomas needs us! Thomas’ responsibility to Ronan is to groom him and feed him, and Thomas takes his job seriously as Ronan enjoys the pampering! It’s a perfect, poignant and impenetrable bond.
Thomas has many pastimes. He’s an avid passionate sports fan and a zealous movie theater attendee! Richie and Thomas devote several weekends a month frequenting the atrium! This is truly a special time for them to sit back and enjoy their time together. It brings them a strong sense of bonding .
The day my children were first placed into my arms was surreal. I felt an immediate surge of love, pride and joy. And, as they grew older, I also felt the unparalleled surge of worry. When I became a parent of a special needs child I felt my worries now were exponential, but, thankfully, they, too, would be balanced with unsurpassable contentment when his milestones were finally met.
While I’ve come to accept and acclimate to our unique way of living, I know how hard it’s been, how hard it is, and how hard it will be. Although I’ve left the tears and the sadness behind, I remember how many tears I cried wishing and praying for a cure, and how many tears I cried knowing he’ll never be able to walk, skip, run, jump, play, hit a ball, hold a pencil or crayon or hold a cup to drink. I know how we’ve all had to make changes to accommodate him. Growing up my mother engrained in us physical, emotional, and intellectual strength & courage. She taught me “If you’re in the water, you have to swim.” I thank her for this gift. Although I’m always exhausted and I’m always drained, I will never give up!
More information about Ataxia-Telangiectasia.
