My husband and I are blessed with two very special daughters. I’m sure most parents think the same of their children, and I would concede that they are probably right. However, I would like to share the story of our girls and let you decide for yourself. Let’s start with Rebekah, our lovely 16 year-old Annie look-a-like. Rebekah was born with a rare genetic disorder, Chromosome 9p-. In short, she is missing a piece of the short arm of her 9th chromosome.
We were fortunate that the doctor’s who delivered her recognized immediately that there were abnormalities in her appearance. Of course to us she was beautiful and there was absolutely nothing wrong with her. She was born with a full head of red curly hair and beautiful brown eyes. However, she was also born with the two front plates of her skull already fused together, an event that doesn’t normally occur until after a child reaches puberty. There were other signs, such as long fingers and toes. Because the doctor’s recognized these anomalies so quickly, we were able to speak with a geneticist even before leaving the hospital and knew of her diagnosis within days of coming home. This early diagnosis enabled us to seek early intervention for her development. She had speech, occupational, and physical therapists from a very early age.
Rebekah didn’t crawl; she scooted along on her bottom. It was many a pair of pants or shorts that we had to replace because she had rubbed a hole in the bottom rather than the knees. We have faced challenges and trials over the years, including cranial/facial reconstructive surgery at 6-months of age to correct the fusion, as well as developmental delays. Today, Rebekah is a 16-year old young lady wanting many of the things other 16-years want like a car and a boyfriend. She is also a huge San Antonio Spurs Basketball fan.
Sarah was born 4 years after Rebekah. We faced challenges when Sarah came home as well. The first week Sarah spent in daycare resulted in her contracting RSV. This led to immediate admittance in the hospital and subsequent stays when she developed other respiratory problems. My first Mother’s Day with Sarah was spent in a hospital room as the doctor’s pounded on her chest trying to clear the mucus that built up.
As an infant and toddler, we were constantly trying to find ways to get Sarah to gain weight because in addition to the respiratory issues, she also had reflux and rarely kept an entire bottle down.
Both Rebekah and Sarah have been encouraged to participate in sports and activities. As a result of the early therapists Rebekah had, we were fortunate to be invited to participate in some of the early activities with Kinetic Kids, a program for children with disabilities. Rebekah has enjoyed gymnastics, t-ball, basketball, and soccer through these programs. She is also in track and field and bowling with Special Olympics. Throughout all of these activities, Sarah has been Rebekah’s cheerleader, always encouraging her to try her best and getting on the field when necessary to help her face the challenges.
Sarah also tried many sports before she found the right one for her. She tried cheer, dance, gymnastics, golf, and tennis before she quite by accident “fell” into diving. Rebekah likewise has been there to cheer Sarah on and encourage her to strive for more difficult dives. Rebekah has even expressed a desire to give diving a try.
So, despite the challenges our daughters have faced, they continue to grow and thrive together. My husband and I have now come to the realization that both of them are stubborn and determined to go through life on their own terms. They are also fiercely protective of each other. Despite Sarah being the younger of the two, she is often in the role of older sister, watching over Rebekah, keeping her safe, and guiding her to make right choices. While none of us know what the future holds, we are confident that our daughters will continue to face challenges together, will stand by each other, and will maintain the special bond they have.
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