My Sunshine.....Rebeka's Story

Welcome my dear friend, Adlin, as she shares her daughter's story.  One little girl's big, bold heart that breaks down all the barriers that Down Syndrome puts in front of her.  In honor of Down Syndrome Awareness Month, I present to you My Sunshine....Rebeka's Story.

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ANGEL.

PRINCESS.

SUNSHINE.

When I was pregnant with my first child, my sisters (14 at the time) decided that the baby needed a nickname, since they couldn’t very well call the baby ‘it’, or the impersonal, ‘the baby’. So, a new family tradition began. Baby Bump number one became Angel, Baby Bump number two became Princess, and Baby Bump number 3 became Sunshine.

Fast forward to the end of Sunshine’s pregnancy, June 24, 2004.

Strapped to a table
                curtain separating me from my body,
                                feeling scared and disjointed.
                                                  Emergency C-section.

The doctor brings out my baby, and a flurry of activity erupts. I look at my husband, Manny, and he’s beaming. I begin to relax. Then I hear the words…

“She has facial features of Down Syndrome. We’ll have to send her for testing.”

Again, I look to Manny for his reaction. I see confusion, fear. I start to panic. I’m too caught up in the increased activity.

Why are they taking so long to bring me my baby? 

The nurses and a new doctor are all around my little one at the tiny table they laid her on. After a few minutes, the doctor tells me that her heart isn’t working correctly and they have to send her to NICU. She’s brought to me to give her a quick kiss as they whisk her out of the room.

My eyes are greedy to take her in the hot second that she’s there. She has her father’s skin tone, hair color and the biggest eyes I’ve ever seen on an infant. She’s beautiful!

“I love you. God protect you, Rebeka.” I whisper as they take her away.

Rebeka is taken by helicopter to Miami Children’s Hospital. She is in NICU for 38 days. Flat lines three times. She has three holes in her heart. Develops asthma, severe acid reflux from the heart meds. My little girl has joined us on Earth equipped with a team of nine specialists! She comes home, only to go back a month and a half later for open heart surgery. And through it all, is the calm peace that she’s going to be OK.

Life takes on a slightly surreal feeling. We are now so accustomed to acronyms that we sound like we’re speaking a different language. We’re in a different specialist’s office four days of the week. I am lugging around an apnea monitor that is always connected to my ever sleeping, four pound ball of Sunshine. Heart meds are around the clock.

Then, one day, as I’m holding Rebeka, she looks at me and smiles. I’ve waiting over six months for a smile from her. I burst into tears. I hold her to my chest and cry like I’m mourning. And I am. I am mourning the first six months of my child’s life. Between diagnosis, treatments, appointments, surgery and nights that I was too afraid to sleep, for the fear of finding Rebeka not breathing in the morning, I have never stopped to really think about the miracle in my arms. Doctors prognosis’ of what she’ll never be able to do, of preparing us “in case she doesn’t make it”, all the emergency room visits, all the hospitalizations. They have all robbed me.

When you are told your child has DS, that’s all you see. 

Then God touches your sight, 

you can look past the condition and see the child. 

And what I see inspires me to no end!

Rebeka brings a strength and courage with her. To see her tiny frame take it all and still take a breath; to have her chest split open and heal in three days; to watch her struggle to drink milk and still get a whole bottle down. Everything I take for granted, my Becky has to fight to do. And she does it like a champ.

She is determined, never quits. She is unconditionally loving, always positive. Sweetness personified. Has instincts sharp as a razor, she can feel you out in a heartbeat. Her smile and her actions bring instant happiness. Courageous. Strong. Innocent. Pure.

There are things Rebeka might never do. I don’t worry about those things, let the doctors worry. I’m too busy praising God for the wonderful accomplishments she has had through Him so far! She inspires me to live fuller, love deeper, laugh more often. She has taught me to live each moment like it was our last one.

Seven years later, I sit and watch my Becky twirl and dance. I watch her interact with her siblings and her friends, the joy on their faces and the love in their eyes. Her nickname, Sunshine, could not be more accurate. She brings Sunshine into everyone’s life that is in contact with her. She makes days brighter. And as October approaches, and the Down Syndrome Awareness sign goes up on my garage door, I think about the most important lesson she has taught me.

ACCEPTANCE

Accepting that things are not always the way we think they should be. They are perfect on their own.

Accepting that God has everything in His sights.  All we have to do is sit and wait for Him to reveal His plan!

Accepting that every human being is deserving of the same respect and love.