The Celentano Family

The Celentano Family

Newsworthy: Everyday acts of kindness. (3)

A new blog series highlighting the art of caregiving.

Photo narrative by: Teresa Celentano

©Suzanne Fiore Photography

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! 

For more information about Ataxia-Telangiectasia please visit this link.

  • Teresa, I really enjoyed getting to know your family through these photos! You write so eloquently about how you feel. Thank you for sharing your story and thank you, Suzanne, for capturing such beautiful, candid, moments!

    • Thanks Lindsay! What a joy it was to capture the Celentano family. And I agree that Teresa’s writing was so eloquently expressed. A meaningful collaboration for sure.

    • Thank you so much to everyone for taking the time out of their busy schedules to take a peek into our lives. I truly appreciate all the kind words, positive thoughts and prayers. I thank Suzanne for her time, patience and love and I thank my family and friends for their love and support of our family. It is because of you that this journey has been so remarkable. Thank you.

    • Thank you Lindsay for introducing me to Suzanne! You’re both angels hard at work! Never stop! What a joy to know you both!

  • Rosalia Cordaro

    Cara Theresa sono commossa nel vedere queste foto , Sei una Donna Forte e sono molto orgogliosa e Felice di averVi conosciute a te e la Tua Bella Figlia. Bacioni

    • It is with so much appreciation that I thank you truly Mrs. Cordaro. You showed Alysa and me kindness when we really needed it. It’s not me who’s so strong, but those around us who support us! I will always remember your love and kindness.

  • Josephine Arbelaez

    It was so nice to see pictures of your son Thomas and his life. May God bless you and your family always. You are an amazing women.

  • Theresa, It was a true blessing for me to be Thomas’ Principal at St. Clare’s School for the years he was with us! As a little boy he was a joy…always having a smile on his face and showing kindness to all! I am so happy to see that he has grown into a loving young man with an indomitable spirit! You are all in my prayers, and thank you for sharing your family’s story with us!

    • St. Clare’s was a precious stepping stone for Thomas, and you were a very important part of who he became. It is through the notable and outstanding love, warmth, patience and kindness he experienced throughout his school years that he was able to become such a good and kind soul-one that’s filled with so much compassion and perseverance. I will always be indebted to those who held Thomas near and dear to their hearts. Thank you.

  • Hi Teresa, I was a Para in Tom’s class at I.S. 75. It was great seeing Tom’s day at home with family. He looks wonderful and just like at school – always smiling! Thanks for sharing your story. Please say hello to Tom for me!! Sending prayers to all!!