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Down Syndrome Day. Lulu’s courage and the strength of a mother: “The State does not help us, but we’re happy”

The voice of the mother who met Pope Francis during the audience with participants in the Convention for Persons with Disabilities promoted by the Italian Bishops’ Conference (CEI): “Those who enter our home see a situation like many others.” The fear of parenthood, the battle for school inclusion, the dreams and the worries: “We’re already thinking of what will be ‘after us’”

Not even the Vatican gendarmerie, always ready to protect the Pope’s safety, were able to stop the blonde girl who walked up to him in the Paul VI Hall: “She’s not afraid, she’s not afraid to risk, she knows that diversity is enriching and she gave us a lesson!” Francis had said with a smile. The parents of Lucrezia, who will turn ten in May, Lulu, as her friends call her, cherish that emotion in their hearts. “The Holy Father had received us in audience the previous day, and I was already happy for that opportunity”, said the child’s mother Maria Rosaria.

What does Lucrezia remember of that unplanned encounter?

Her father and I were seated in the second-last row, we saw her from the big screen. My husband cried: “Stop her!” I said: “Yes, but how?” The next day Lulu did something beautiful: she was engaged in a difficult activity and I offered to help. She looked at me and said: “Let me do it by myself. Even the Pope told me that I’m a brave girl.” It’s extremely important for her to know that other people trust her. It makes her feel responsible and accepted.

Lulu was born with Down’s Syndrome. Were you aware of it before she was born?

I made no specific screening tests during my pregnancy that we wanted so dearly. When she was born the doctors didn’t detect it. It was the conclusion of a beautiful fairy tale, what a woman had dreamt of since she was a child. But in the afternoon they contacted my husband and they told him they suspected trisomy 21. When he went back into the room, I understood from his face that something was wrong. So I asked to see her immediately, because she was a premature baby and had been transferred to the semi-intensive care unit.

It was a tough moment.

I had a strong reaction when I saw her:

She was a bundle of tenderness, but I was overcome with fear.

I didn’t know what to do with my child. It’s already hard to be a parent, and having a girl with special needs. I mustered up my strength. I’m not ashamed to admit that I was hurting badly.

When did things change?

At the exact moment when the diagnosis was confirmed. I understood there was only one road ahead of us. I immediately contacted the Italian Association for people with Down Syndrome. For a long time I looked for answers, from physicians and geneticists, to find the causes. But the truth is that there is no cause to this …

Mother and father always together by Lucrezia’s side.

We’re a solid couple. Today we live out this situation with normality, and we’re happy.

Those who enter our home see a reality like many others.

Until now we experienced no limitations. Indeed, we did face major difficulties: there is no support from public institutions.

Is there still a long way to go in terms of inclusion and support to families? A very long way. We considere ourselves blessed because Lucrezia has remarkable abilities given her genetic condition. We manage to get by, but all forms of support are private and upon payment.

There is practically no support service at public level

Other families are experiencing situations that are far worse, making their lives extremely difficult. There is lack of information and education.

What about school?

I fought my battles, now I am reaping the fruits. She attends the fourth grade in a public primary school. The first two years were hard, but now we’re happy. We teamed up with the teachers, we never put boundaries to what she couldn’t or couldn’t learn, everything was discussed in the open: emotions, relationships, the most problematic moments. Even on WhatsApp, her teachers were always available for us.

Is Lulu aware of her condition?

We have started to explain to her that she was born with an extra chromosome, since she is aware of her limits. Obviously she doesn’t know what all of this is about. However she experiences it in first person every day.

She occasionally feels frustrated. When that happens, she asks me, for example: “Why is my cousin cycling faster than me?” She lives with her disability every day. Thus the sharing of information is of utmost importance.

We told the teachers that Lucrezia was aware of her condition, and that they had to be prepared to answer when she asked questions. They were good at transmitting this message to her schoolmates.

Did you experience unpleasant situations?

Never at school. In the past few days her school took part in “Miguel’s race.” They sent me the pictures and a teacher wrote me that she was moved because during the relay race they helped her run and in the end the whole class rejoiced together. It showed that diversity can become normality.

Does she have a best friend?

 

She has several good friends, one in particular who often invites her over in the afternoon. Differences start to become noticeable especially at this age. But when they play her schoolmates make sure that it’s at her reach, they increase the level of difficulty very gradually. Now she is into Scouting, obviously this requires some preparatory work: I commend them for welcoming our yearning to make the other kids know Lucrezia for who she is.

How are the days with Lulu?

Everyday life is enriching and never boring. There’s always a lot to do, ranging from going to the psychologist to the speech therapist, connected with her extra chromosome! And there are also ordinary activities like doing homework along with the activities of a girl her age. She’s a very determined child.

How do you imagine the future?

We’re already thinking of what will be “after us.” It’s a painful subject. She’s an only child and we have no relatives in Rome. It isn’t only a thought, for when we will grow old, and we won’t be able to take care of her as we do today. It’s also the thought of “after us” for her, without us.

It hurts me to think of the day when this life for her will end, and she will be left alone,

when she will be living in some institute or in a hospital, in utter loneliness. It scares me, and I take consolation in the thought that it will happen a long time from today. I’m afraid she won’t be told how enriching and important her life has been for us all.

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