· By Betina Genovesi
I do not fell fortunate because of Clara's disability
This morning I saw a video that I cannot stop thinking about.
It's an interview in Italian. A 9-year-old girl named Greta is talking about her sister, who has a disability. Greta can't stop crying while she speaks. Through her tears, she says, "My sister taught me to live."
Then the interviewer asks her something that stayed with me: "Do you feel fortunate to have her as a sister?"
Greta says yes.
I couldn't stop thinking about this video, so I wrote this comment under the video:
"Since I saw this video this morning, I cannot stop thinking about it. Her tears.
As Clara Woods and Davi's mom, I feel these tears deep in my heart. We always have to do so much for one child, and the guilt is always with me. I always ask myself if I am doing enough for the other child. I split myself into so many pieces to make it work.
I read so many comments in this post, and I invite you to break your fears and help families with children with disabilities. We are tired. We feel alone. We have to manage a thousand things at the same time, with no instruction manual.
Saying that this little girl teaches everyone is beautiful. But we need one hour of your time so we can breathe, so we can go to the movies with our other child, so we can look at life with a little more lightness.
We do not need pity. We need real actions that can help us through the moments of despair, exhaustion, and burnout.
I do not agree when people say we are lucky. I do not agree when people say we were chosen for this, and because of that, we are able to handle it, and so we can carry all the weight alone.
I love Clara with all my heart. I left everything to build a future with her, and she teaches us, too: Clara teaches us not to give up, to smile in the middle of hard times, to find the good in the bad, to love life.
But I do not feel lucky when I worry every night about what will happen to her if I die.
I do not feel lucky when I see my son worried about how he will handle Clara's care when we are gone.
I do not feel lucky that I lost the one hour I had with Carlo to do yoga together, because one morning, Clara was alone and had a seizure, and now we are scared to leave her again.
(Clara and Davi, Bologna, 2012)
I do not feel lucky when I cannot answer Clara when she asks me if she will ever have a family.
I do not feel lucky every time we wait for medical test results. I could give a thousand examples like this.
We were not lucky, and we were not chosen. This happened to us, and we had to react with everything we had. Each of us tries our best.
I cry often. Then I keep going, because Clara's smile and love push me forward.
This reflection is a real request for help, for every family you know with a person with a disability. One small gesture from you: a flower, a meal, a note, one hour of your time, can change their - our lives.
And for children like this girl and like Davi, let's try to listen to them. Let's give them a chance to share their fears, what they feel, what they want, without filters. Let's try to respect their space, to give them hope and love. It is not easy for them.
And thank you to Paolo (the guy who made the interview). He gets a lot of criticism, but through these conversations, he touches on points that are so important to discuss, and we can push for real change."
(clara and Davi - the day before we moved to the USA, Florence, 2020)
With love,
Betina
11 comments
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Hi Clara, I’m Kandi. Your story is so inspiring to me. I too had multiple strokes in my mother’s womb, and have been searching my whole life to know if there are others out there like me. I struggle with intractable complex partial epilepsy, TIAs still, and the judgement of others. I will be 42 next month. There is hope Clara and you are not alone! I just want you to know that, and that you are incredibly amazing.
Kandi on
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Dear Clara,
Yes! You can have a family, you just need to meet the right person. (which isn’t always easy.)
A woman I know who is completely deaf and has cerebral palsy has been happily married for 31 years! (tomorrow, July 29) .
Her parents were told to put her in an institution when she was born. The doctors said she would be nothing but a vegetable. Fortunately for her, she had amazing parents like yours. She grew up on a cotton and cattle farm in Texas and when she was old enough, she joined 4H and raised lambs and showed them at County fairs all over the country. Out of the thousands and thousands of 4H members in Texas alone, she was in the top 10! When she finished school, (including being certified in college) she moved to Arizona on her own because there were lots of deaf people there. She worked as a job coach for handicapped people helping them hold jobs, etc. She mostly worked with people that are both deaf and blind! When I met and subsequently married her, everyone said I was nuts. I had two very young boys I was raising myself from a previous marriage and they quickly became “her boys“. To this day she is mom to them. She is now completely bedridden and at 70 years old I am her sole caretaker. It was hard to learn a new language at 40 (sign language) and it is harder now being her caretaker. Everybody has hard times in their life. All I can say is just keep going forward and do the best you can. I believe that if I were not married and a lot younger, I would absolutely marry you. You seem so full of life and love. I believe you are truly a beautiful person inside and out.
As they say, you go girl!Bruce Kerr on
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I completely understand your point of view Betina. My 16 year old daughter had a car accident on the way to school, leaving her with a brain injury in the language center and paralyzed on the right side. The once homecoming queen Drill team/dancer and PALS companion used a computer to communicate and had the rest if her life in a wheelchair. It broke my heart. BUT God took what the devil meant for bad and as my other daughter says We taught her to make lemonade out of lemons!
When I found Clara it made my heart leap with joy! She reminded me of my Kayanna. Her presence, like my Kayanna’s presence, is unfiltered. It is REAL! REAL LOVE, JOY, EXCITEMENT, PAIN, FRUSTRATION, ANGER AND FEAR. All the emotions that EVERY single person feels…. and wheres a mask to hide. She feels them! She expresses them and THAT IS A GIFT!I thank God for the 5 years I had with Kayanna after accident. They were full of challenges but my view of this world is so different and My precious Kayanna taught me how to REALLY LIVE!!!! I SEE YOU, I FEEL YOUR HEART and I promise God sees you too! YOU ARE ALL CHANGING LIVES! Keep up the good work!I would love to speak to you if you wish to reach out!Shari Lancaster on
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I worked for a time with an age range of people with disabilities. Most were in group homes. Some learned tasks and worked in a restaurant with an adult supervising them. Some were incapable of doing those things. I wondered about their families and how hard it must have been to let them go. Your blog has opened the door as to what families are faced with. Clara is so very fortunate to have the support of her family and what an amazing young woman she is. You have given her the freedom to accomplish so much. You also need to care for yourselves.
Jan on July 07, 2026Jan Oller on
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Dear Clara,
Thank you so much for the wolf post card! I hope you learned lots about wolves. They are a beautiful animal, just like you are a beautiful person. You are the lucky one to have a mother like Bettina. Not all parents love their children unconditionally. I know firsthand as I worked in a group home, taking care of young men whose parents wouldn’t step up and take care of them.
Best of life to all of you!
(Can’t wait to find the next painting that makes me wanna have it!)Bruce Kerr on
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Love your beautiful interview of your beautiful family. We all need to stop and listen to share in the journeys we call life! We all have different journeys, and you all are a inspiration and amazing and talented people! We thank you for sharing your lives with us as we continue to love and share others of love and lots of blessings to you all!
Vonna Beach on
