Emanuele is now 10 years old. His mother Stella shares how the experience of raising him has filled her life with joy.
Maria Stella Barone is 54 years old and happily married to Marcello, an anesthesiologist. They have three children — Francesco (28), Gabriele (20), and Emanuele (10). An elementary school teacher, Barone taught in a Catholic school in her city of Messina, Italy, for 17 years. At the birth of her second child, she left teaching to be a full-time mother, her longtime desire. She is actively involved in her local parish where she works as an extraordinary minister; and she is a Franciscan tertiary. She and her husband are involved in pastoral outreach to families. Aleteia recently spoke to her about her new book and what she has learned from being the mother of a child with Down syndrome.
You have published a book, Precious in My Eyes, that we have also cited as one of the most beautiful books for women. Can you tell us more about it?
After the birth of Emanuele, I wanted to publish a book about my particular experience as a mother “with an extra chromosome imprinted in my soul.” It is just a declaration of love that I give to my child, telling him his story, from conception until he began to go to school at age six. It’s a story full of pathos about the ups and downs that I lived at that time. I thought of writing it to help all those parents who are suddenly catapulted into an unknown world and are full of fear.
Tell how you lived this motherhood at the beginning … what were your fears and anxieties?
I did not have any help initially and I had to find “the way” on my own. I went through a personal hell that lasted 50 days, and at the end of this path I finally saw the light and I understood many things. I did not want to do the amniotic fluid test because I have always been against abortion. So I waited for this child, aware that at my age, he could have arrived in a “different” way than normally expected. I realized at his birth that one is never really prepared for the disability of one’s child. His syndrome, or rather the suspicion of it, was communicated to me on the day after delivery in a brutal way. I had no idea what the syndrome involved. Everything that is unknown scares me, and I had catastrophic news from doctors about what the future would hold. I felt totally inadequate and unprepared.
What changed? And what does your child teach you?
Over time, after that transformation started on the 50th day, I understood thanks to the faith that Emy is a great gift from God, a very personal gift for me. For me, Emy is a “living” book through which God speaks to me, making me understand, precisely through the bond between me and Emy, the filial relationship between me and Him. Emy taught me patience; He taught me that we must be happy for the small joys of every day. I often ask him:
“Are you happy?”
“And why are you happy?”
“Because my Mommy loves me!”
He taught me, and continues to teach me, to understand what counts most in life: being a person who has an intrinsic value, not for what he has or what he can do, but only because he is a person created by God, precious in His eyes and able to arouse immense love. Because of this, I especially like to help others reflect on the fact that disability is only in the eyes but especially in the heart of those who see it and judge it negatively! I always say that my son is only “born” with Down, that it is only a birth condition and nothing more. After a painful journey, I came to see in him what he is: simply my son! Our children are not their syndromes, but children to love; no illness or syndrome will succeed in making us love you less!
Do you have any advice for mothers who are about to welcome a child with Down syndrome?
I do not like to give advice directly, but I would like to help you understand that life is wonderful even with its difficulties and you must always try to make it as much as possible on a human scale. So what does it matter? To love, love, and continue to love this child who has been given to you. And then inquire as much as possible so that through therapies, methods, and other helps, you can improve his quality of life, clearly always accepting the point that you can reach, respecting the skills of your child if he does have certain skills. If not, you do not have to make it a tragedy. I will love him anyway because he exists.
And to those who are tempted to end the life of their disabled child when they discover his disability through a prenatal diagnosis?
To all those mothers who fall into anguish at the news of their unborn child’s syndrome and perhaps feel the temptation to abort, I say, have the courage to carry on the pregnancy because you will be amazed by the joy and the wonders these children will bring into your life.
You know, there’s a risk of directing our grievances towards society. What can we do to avoid victimization or recriminations?
I do not like victimization or complaints that we “special” parents are often given to expressing. It would be better to use our energy for more constructive things. For example, we can work for the inclusion of our children in today’s society, from school to the world of work, trying to make others understand that their dignity is sacred and that even if their abilities are different, their opportunities must be equal to all the others. Respect is the foundation for everything.
I do not like the desire to “compare” our children with the skills of “normal” people because thanks to God we are all different and everyone is what he is and in this diversity is beauty and completeness!
How did this deepen your faith?
In my adventure, begun 10 years ago, I must say that I have been helped a lot by my faith, by the living and personal relationship I have with God, who is my Father and who can only want my good. And even if sometimes I cannot understand, I must always trust Him and entrust myself to Him, like Mary. Like Mary, every day I sing my “Magnificat” for all the wonder that God has accomplished and is fulfilling in my life through my sweet Emy …
How do you keep your peace and your good mood?
A personal secret of mine for keeping peace and good humor — and now it will no longer be a secret! — is to live life naturally, to raise these children in the same way as my other children.