I believe that the eyes are windows to the soul. Alex made eye contact from the day she was born. When looking into her eyes, we couldn't help but notice something very magical. She had an amazing way of drawing us in with her eyes...right to her soul. She made it easy to see a perfect person, a true gift from God. She stared right at us with a calm, but intense look, a very peaceful but deep gaze... like an angel assuring us, "everything's going to be OK." Ironically, I think that looking at her beautiful face and into her comforting, warm eyes is how we were able to cope at first. I swear her crystal blue eyes would twinkle. Sometimes she would fix her eyes just past me and I would say, "Alex, are you talking to your angels?"
Not too long ago, doctors encouraged parents of children with Down Syndrome to institutionalize their child. Many of these children were denied much needed surgeries and consequently, many did not live long. (Life expectancy in 1983 was 25.) Many were denied the most important thing in life...a loving family. How sad that people with Down Syndrome were kept from society because their worth and potential was so wrongly determined by others. Some parents did, however go against the mainstream thinking. They raised and loved their child, recognizing the true value of a human being. We are thankful that Alex was born in a place and time with more acceptance, opportunity, support, and advanced medical care. 20 years ago, doctors did not expect that people with Down Syndrome could learn so well, graduate high school, hold a meaningful job or live to a normal age. I try to look into the future and think that 20 years from now, more advances will be made and the expectations will be even greater. I hope that more people will open their eyes and their hearts to the true meaning and value of every life.
Even though we are living in a time of such advances, there are still those who lack faith, and have difficulty looking into the future with hope. Some of the professionals we met with seemed to focus on the limitations we should expect with our daughter, painting a future of struggle and hardship. Besides those first few weeks after finding out Alex had Down Syndrome, we have yet to experience any struggle and hardship different than raising any child. We unconditionally love Alex for that special soul inside and know that her worth is not defined by how quickly she can do a puzzle, or how many colors she can identify, or the age she learns to walk. It is sad that all too often, worth and value are judged by IQ or performance or looks. Sadly, we are living in a world where people have the option or "choice" to pick and choose and judge which life they think is worthy of birth. Alex has been a blessing...and maybe she picked us.
Although we unconditionally love Alex, we were not just going to sit back and quietly accept a future of limitations. We wanted to give Alex every opportunity we could to help her reach her goals...to crawl, walk, communicate. So, besides our weekly physical therapy session, and education session provided by the county, we explored alternative approaches. We would do this for any of our kids that were struggling academically, medically or developmentally. I don't think there is a limit to a child's potential. Advances in medicine, science, and nutrition are ongoing. There is so much about the mind and body that is a mystery. Different therapies are being explored to help people with Down Syndrome lead healthier, happier, more productive lives.
Incredibly, Alex had her heart repaired at 6 weeks old. I am constantly amazed with modern medicine, the talent of the surgeon and an 8 pound baby who can withstand open heart surgery...(Click here to read about Alex's Heart Surgery.)
Alex has been doing great developmentally. Speech is her greatest challenge. She has also been incredibly healthy. She crawled by 10 months, took her first steps at 15 months and was walking everywhere by 18 months. She climbs, runs and jumps. At two years old she knows so much...objects, animals, body parts, flash cards, etc. She loves books. She is very social and has a sense of humor, She is beautiful, energetic, motivated, determined, exciting, fun, sweet, so lovable and she gives the greatest hugs and kisses. We thank God for our little angel Alex and her good health. We feel strongly that our extremely loving family and friends coupled with optimistic, innovative doctors, teachers and therapists have helped us and Alex be at such a great place today. Please read about our journey. We hope to not only share our story, but to give hope and encouragement to anyone out there dealing with these words, "your baby has Down Syndrome."
I never imagined that we would learn life's most important lessons with such intensity and clarity...and all from this little girl. Alexandra Rose, "Alex," joined our family 20 years ago on April 4, 2002. Alex has Down syndrome, also known as Trisomy 21. She has deeply enriched our lives. She is a thousand rays of sunshine.
"For You created my inmost being; You knit me together in my mother's womb. I praise You because I am fearfully and wonderfully made; Your works are wonderful, I know that full well. My frame was not hidden from You when I was made in the secret place. When I was woven together in the depths of the earth, Your eyes saw my unformed body. All the days ordained for me were written in Your book before one of them came to be." (Psalm 139:13-16).
The following was written in 2004 when Ally was 2. Now (2023) she is almost 21. She attends a college program, cheers on a college cheer team, sings with a college choir, loves to travel, always has summer part time jobs, has a very full life!
