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Leaning In to Motherhood: When You Learn You Have a Child with Special Needs

Disponible en Español aquí

Lean In as defined by Sheryl Sandberg: Women who “sit at the table,” seek challenges, take risks, and pursue their goals with gusto.

Everybody expects to have a perfect child. We want our children to be loved and accepted. Facing the reality that your child may be born or diagnosed with special needs is not an easy task. That’s when leaning in to motherhood is finding the strength and passion to beat your own prejudices for understanding that there is no child more perfect than yours, regardless of their abilities.

I was five months pregnant when the doctor told me my baby would have Down syndrome. It was the same day I also learned that he was a boy. I felt sad and guilty for bringing him into the world with a disadvantage, but I never thought of giving up on him. I cried and prayed during the next five months. I told God things like, “If you exist, take away that extra chromosome,” or “If you really love me, don’t let him be born into such a tough reality.”

My mind and my heart were filled with fear, resentment and doubt. I didn’t know if I was going to be able to be a good mom to a typical child, much less for a child with special needs. A couple of times I felt strong enough to look on the internet, and type the words that were so painful for me to accept: “Down syndrome” But every time I did, I only got depressing information and difficult prognoses.

I used to sit on the porch of my house in the stillness of the night, trying to quiet my own voice, looking for a sign that would help me understand: Why me? Why him? Why us?

Still, I always loved that child, and even knowing he was not the perfect child who everybody wants, he was perfect to me. He was my child, and since the first day I knew he was growing inside me, I loved him, and I knew his love would change my life forever.

Even in the womb he was sweet and loving, moving slowly and gently. He was always swimming inside me; it felt like he was cuddling and stroking my tummy. I didn’t imagine how he would look the moment they placed him in my arms. I had no clue how a newborn with Down syndrome looked; I was only sure that he would be the cutest child in the whole world.

Finally, when the day came. I didn’t want to get the epidural or any other kind of anesthesia. I was determined to feel every moment of his arrival and to receive him with a smile.

His first day of life in the world.

I took him in my arms and I smiled to him, I gave him a kiss and without saying a word, I handled him to the nurse, who had to take him to intensive care because he was not breathing right. For the next couple of hours, I didn’t give up hope that there would be good news. When the doctor called me to the NICU, I walked slowly, repeating in my mind, “God, please do it. Take off that extra chromosome.” But He didn’t; and even though I already knew my son was coming with Down syndrome, to hear the doctor confirm his diagnosis was more painful than I ever expected.

He was lying in a glass crib with lot of machines attached to him. I had to push aside some cables in order to hold him in my arms. He was breathing from an oxygen mask as the doctor and the nurses were trying to explain to me more about Down syndrome. I remember asking them when I would be able to breastfeed him. The doctor asked me to not to put pressure on myself, as sometimes babies with Down syndrome are not able to breastfeed or eat. I cried.

Some days later, I asked again to nurse him. The doctor repeated the statement again. I insisted. He removed the oxygen mask and handed my son to me. I placed him on my breast and he started to nurse, while my tears wet his little face.

That was the moment that forever changed our lives and our futures. From that moment, I knew our lives would not always be easy, but they would always be perfect in their challenges and triumphs. I understood we would always find people who didn’t believe in him, or in us, but that I would always give him the chance to show what he could accomplish. I realized that no matter how long it took, every day he achieved a new goal would always be our best day.

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And I learned that I would always be the best person for him, and that he would always be fed by my love, my faith and my hope.

And that’s how we all are today. We are not perfect. But we are happy people.

Three years after my son was born, I got another great surprise when my daughter was born with Down syndrome too. I felt sad and confused, but I already knew she was ready to show the world how able she could be, even when others only wanted to focus on her disability.

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Today, I raise two kids full of abilities. I have nothing other than love in my life. And actually, I don’t need anything else.

Editor’s Note: We’re celebrating Mother’s Day by celebrating leaning in to motherhood, and by recognizing the extraordinary women that are our own mothers. We hope that it will inspire you to thank your own mother, or the mother who most inspires you. Find more letters and stories about leaning into motherhood here. And, of course, find your own Lean In inspiration at LeanIn.org.

 

Follow Eliana Tardio on facebook and twitter.

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