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