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.
Julia & Lindsay
Newsworthy: Everyday acts of kindness. (1)
A new blog series highlighting the art of caregiving.
Photo narrative by: Lindsay Hyland
©Suzanne Fiore Photography
I have three sisters. My sister Julia, who shares the middle with me, was born with developmental disabilities. We’ve always had a unique relationship as I had to learn how to communicate with her in ways that were different from how I communicate with my other sisters. When Julia sees me she comes right up to me, smiles, and says “Nose!”. This might seem strange to other people but this is Julia’s personal word for me. It’s her way of saying hello and I love it.
When people first meet Julia, they might not realize that she is capable of showing love but it is these moments that have proven that Julia can make really wonderful connections with people, especially her family.
Julia loves her home and we often find ourselves spending time there. It might be just for a quick hello, or for lunch, or for an event that the house is having. The staff at the house will find any excuse to have a family gathering and I know Julia is delighted to have us all over to her home for birthday parties, holiday parties, and special events!
I often bring Julia with me as I run errands. With our busy schedules, this is one way we can spend time together! I enjoy bringing Julia grocery shopping with me. She is such lovely company and helps make the most mundane activities fun!
Having Julia take an item off the shelf and put it in the cart might seem like such a simple task but it took Julia many years to accomplish.
Julia also really enjoys going for walks. We will usually take a nice walk around her neighborhood but we sometimes head over to The College of Staten Island Campus which is close to Julia’s home. It’s a lovely campus to take a walk through. It is also the old site of The Willowbrook Institution.
Julia was born just as Willowbrook was closing and I tend to wonder what life would be like for Julia had she been born 15 years earlier. Willowbrook was such an awful place and I always pray that we never go back to that. I wonder what it was like for the siblings of those individuals living in Willowbrook. Did they have the same fears I have for Julia? Did they wonder how their sibling was being treated? Did they even know how awful it was?
Walking around this campus makes me think about all the hard work it took families to fight for a better quality of life for their loved ones. I can’t help but feel grateful to the individuals who helped shut down Willowbrook. Julia would never have grown into the amazing woman she is today if she had lived there. I am so grateful to those individuals before me who advocated strongly for programs to help support individuals with disabilities.
Growing up it was a lot easier to spend time with Julia as we were all under the same roof, sharing space and having fun. As we got older, and all moved out of our childhood home, including Julia, it got harder and harder to see each other as often as we’d like. Luckily, Julia lives in a lovely community residence run by AHRC about a ten minute drive from my house now.
It’s really wonderful to see Julia living as independently as she can. The staff at the house continually challenge her and teach her new skills, as well.
It makes me so happy to see Julia so happy. It’s a true testament to the hard work of her Direct Support Staff. They love my sister like she is a part of their family, and in fact, the house she lives in is part of our family too! Julia doesn’t just live in a house, she lives in a beautiful home with her wonderful roommates and support staff. I can never find the right words to thank them for all they do. Their job is not easy and they are terribly underpaid for all that they do in order to create the most amazing quality of life for my sister. I am so grateful to them all because I do not think I would be able to give Julia the same quality care on a daily basis. I am relieved to know that there are men and woman who have gotten to know my sister just as well as I have, if not even better than I know her, and this makes me very happy.
Often, after spending a day with Julia, she looks up at me and says, “wanna lay down? wanna go snuggle?” and this means she is ready to go home. To her home, not mine. And when I watch her run into her room and grab her toys I can’t help but think of how happy she is and how different life might have been for Julia if there weren’t many people who believed she had the potential to be where she is today.
If you are a sibling of an individual with special needs, please find information, resources, and support here.
If you’re a sibling in New York City check out sibsNY.
LILY & CHRISTINE
Newsworthy: Everyday Acts of Kindness. (2)
A blog series highlighting the art of caregiving.
Photo narrative by: Christine Salerno
©Suzanne Fiore Photography
At the end of May I followed these two incredibly strong ladies for part of their day. I wanted to put a face to a rare disease, that Lily was diagnosed with, called Rett Syndrome. The photos here, along with the story accompanying the photos, were posted at that time. Her mother, Christine, informed me yesterday that Lily had a setback with her breathing. Some nights it takes her 5 hours to fall asleep because she is either holding her breath or hyperventilating for hours at a time. When she does finally begin to fall asleep, she forgets to breathe and wakes up again gasping for air.
(Christine has written a more detailed description of their journey. Learn more by clicking on this link.)
Lily’s 6th birthday is in a few weeks. You can join me to give her the most meaningful gift by donating to the Rett Syndrome Research Trust here.
I will be following these two courageous girls again in March to continue to bring awareness to the daily obstacles that a Rett syndrome diagnosis brings. Please consider sharing this story so that others can get to know & support Lily & Christine.
These ladies are such an inspiration to me. Why they aren’t on the front page of every newspaper as an example of strength, courage, success, love, and perseverance is a mystery to me. Let’s show Lily and Christine that we support their strength and bravery by sharing their story.
Every morning, I tell Lily that she is the sweetest, smartest, hardest working, bravest 5 year old I know.
And once you hear a bit about her story, you’ll see why this is true.
You see, Lily has Rett Syndrome. Likely you’ve never heard of it. This is how it’s sometimes described: ‘imagine a girl with the symptoms of Parkinsons, Crohns Disease, Epilepsy, Severe Anxiety and Cerebral Palsy all in one little girl’. It’s pretty devastating. Most girls that have Rett never walk, never talk, need feeding tubes, have limited to no hand function and are on multiple medications to ease symptoms.
Lily is described as being on the high functioning side of Rett Syndrome. Lily walks (somewhat unsteadily, but independently for the most part), has some words that come and go, has some hand function and can eat normally. She’s unable to learn sign language because her hands don’t function well, but thanks to technology, I’m able to communicate with this kiddo.
Though Rett Syndrome impacts almost EVERY aspect of her body, it hasn’t impacted her intellect. Up until recently it was believed that girls with Rett Syndrome were cognitively impaired, but – because of amazing technology – researchers, teachers and parents (though most parents already knew this) realized that these girls are smart. During the week, Lily goes to a special needs preschool where she has upwards of 4 therapy sessions a day. Once she gets home, she has another 2-4 sessions throughout the evening. I tell people that she’s busier than the CEO of the company I work for. This kid works hard. And she has to. If we don’t constantly keep at the skills she has, she will lose them.
Lily needs 24/7 constant care and supervision. She can’t walk up and down stairs independently. Opening and closing doors isn’t possible.
On the weekends, I like to let Lily choose what to do, and I don’t push her too hard. Usually it means waking up early, having her morning smoothie, listening to music, going for a walk, and picking out flowers for our apartment.
Lily communicates with her eyes. It’s amazing how much she can get across with one glance.
Even though Lily has Rett Syndrome, she is still a kid, a 5 year old kid. And she’s constantly pushing boundaries, seeing what she can get away with – like walking into the street.
Usually, I’ll make her lunch at home. She’s on a restrictive diet as girls with Rett have mal-absorbtion issues on top of GI issues so I do a LOT of cooking and prepping. Sometimes in the evening, I’ll take her out to dinner. She’s extremely social and likes to make her way around the restaurant, and introduce herself in her Lily way (which usually means walking up to the person, smiling into their face and then looking at the food on their plate).
She needs help feeding herself. She can no longer hold a cup to drink from.
Music is really important to Lily. One of her occupational therapists (she has 4) described that as Lily doesn’t have an internal equilibrium, music acts as that equilibrium which soothes and centers her.
We have a lot of fun throughout the day.
Having a child with special needs opens up a whole new world to a parent. Some of it is devastating. But some of it is magical. For me, and for Lily, we try to focus on the magical.
If you’d like to learn more about Rett Syndrome, click here.