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Raising two children with Down syndrome: My imperfect life is just perfect for me

I never had a perfect life; actually my life has been always complicated and challenging. My mother passed away with cancer when I was 16-years-old, and from that point I assumed responsibility for my little brother, two years younger than me. I don’t think either of us ever fully recovered from the pain we experienced through the years, watching our mother die a little bit every day. We both made terrible mistakes in our path of growing, and we missed the love and guidance that only a mom can provide.

For years, I didn’t treasure the special moments that regular people do, such as Christmas, birthdays and other holidays. For me, they were always overshadowed by heartache, worries and bad news.

To grow up with those feelings is not ideal. They do turn you into a stronger person, but also into an empty and hopeless individual at the same time. The loss of my mother left me with the worse injury that a person can have the feeling that you don’t deserve to be loved.I never felt prepared to become a mother, so it wasn’t in my plans to get married or build a home. I always visualized myself as the successful, lonely professional, who would enjoy a glass of wine every night and cherish my freedom. But one day I met the man of my life, and he transformed my dreams for the future. He wasn’t the perfect guy either; he was just a regular man recovering from a divorce and the guilt of having lost custody of his two children. We were two damaged souls, so of course, we were a good match. He didn’t want more children, and I didn’t want much from him. But even with that silent agreement, after a year I got pregnant and we both felt happy and ready for the next phase of our lives.

Our perfect first child

I always knew he was a boy and 24 weeks into my pregnancy, I learned also that he was coming with Down syndrome. For some strange reason, that idea was always in my mind since the day I saw the two pink lines on the pregnancy test. But I avoided finding out, even when the doctors suggested I have an amniocentesis.

We decided to call him “Emir,” which means “leader” in Arabic. He was born on April 29, 2004. I saw the Down syndrome in his eyes immediately after the nurse placed him in my arms. And once more in my life, love was disguised as sorrow.

Our leader; Emir, was born with 8 pounds, blonde hair and beautiful light blue eyes

He started growing and we learned a lot from each other. He taught me how to smile again, to enjoy the little things and to discover the real perfection that only the love of a child can bring to your life. At that point love was not painful anymore; he healed my heart.

Our perfect second child

I fell in love with the idea of being a mom again; I loved my son and was ready for children. There’s nothing more perfect than finding that you are perfect to someone else, no matter how broken your heart may have felt once upon a time. Motherhood gave me that feeling of perfection.

My second child was a well-planned and wished-for gift. I dreamed of her, and I asked God for her like this: “God, I want her to be perfect. I want the perfect daughter for us and the perfect sister for Emir. I want her to be the happiness of our lives.” So I called her “Ayelen,” which means “joy” in Hebrew. I took a deep breath and thought about asking Him to please not to send her with Down syndrome, but I couldn’t do it. I felt like I would be rejecting my son, who was the only good thing that had happened in my life until then. So I shut my mouth and waited.

Right at nine months, Ayelen arrived in our lives. She was born chubby, beautiful, strong and perfect. The only unexpected detail was that she was also born with Down syndrome. I felt disappointed, sad and mad with God. How could He have done this to me again? Why was He always killing my hope?

Ayelen was born 2 weeks before expected with 8 pounds and bright blue eyes as her brother

There I was, crying again on what should have been one of the most perfect days of my life. So I decided to take my children and walk away from God and from everybody else. But it took me only few days to come back to Him and thank Him for bringing me so much love.

My perfect life

There have been some very tough times while raising my two kids. Not everyone is willing to look beyond their almond eyes and believe, as I do, that my kids are perfect in their imperfections. The world moves faster than they do, and not everyone is willing to give them the time they need to catch up. But guess what? I have learned to move through life at the right pace for us. And thanks to my kids, I have healed my heart and I have finally been rewarded with the love I never thought I deserved.

Emir & Ayelen, July 2012 at the park.

These less than perfect kids are just perfect for me. Actually, I think we’re a great match. They teach me, every day, how to live and love, while I give them the best of all that I already know. I can only be grateful for having them in my life, and for taking me to a new level of spiritual growth where I have learned that the definition of perfection is unique and special for each human being.

I now believe that children with special needs can come randomly into any life. And for those open to their limitless capacity for love, they have the power to touch our souls, teach us to love with no boundaries, and fill our lives with more love than we ever thought we would receive. 

Read more of Eliana Tardio writing about raising children with Down syndrome and everything in between at elianatardio.com (in Spanish)

Follow her on TwitterFacebook, and Pinterest.

 

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