Allison on "Stormy"

Our second daughter, Allison, has Down syndrome, or Trisomy 21. Having Ally in our family for the past 23 years has transformed all of our lives. We have all done our best to love her and help her grow. To thank us, every day she gives us a warm blanket of love, joy, peace and understanding; gifts that far outweigh what little we have given her. Her older sister and younger sister as well as her Dad and Mom, all love to be around Ally, our “buddy”.

There have been times where we had to rearrange our lives to be there for Ally. But none of us have suffered permanent scars from this; in fact, we have been very blessed. For instance, our oldest daughter, Julie, is now working on her PhD in biophysics and molecular biochemistry at a top-notch university. She was inspired to “find the cure for Down syndrome” when she in grade school. We showed her the karyotype of Ally’s chromosomes, and she was fascinated. Years later she is working to define the pathology linking the 21st chromosome to Alzheimer’s disease. This research may help in the prevention of Alzheimer’s disease for everyone, including people with Down syndrome.

I asked Julie to describe what it was like to grow up with Allison. She said, “To me, Allison demonstrates the purpose of life: unconditional love, honesty, perseverance, and joy. Allison’s gift to me is her love and example. She has pushed me to find my own contribution and purpose.” These are not the words of someone who felt that Allison was a burden to her; quite the opposite is true.

Our youngest daughter, Amanda, always loved volunteering in Allison’s special education classes in junior high and high school and at a summer camp for special needs children. She became head coach of Allison’s Special Olympics softball team (they have won gold and silver medals at the state tournaments) and helped to coach her basketball team. As a result of these experiences, she is now working on her undergraduate degree in Special Education. Amanda is an honor student, and has been elected president of the student teachers association.

Both of our other daughters have received great blessings by knowing Ally; she has positively affected Julie and Amanda’s whole lives. While growing up, our three girls were very attached to each other and they still are to this day. They continue to make time to visit each other, even without their parents! We are so proud of all three of our girls.

Ally (as we call her) has a way of reaching into people’s hearts and melting them. Many times through the years, we have seen her classmates, teachers, paraprofessionals, personal care attendants, doctors, nurses, therapists and even her principals and work supervisors become very fond of her. Sooner or later they come up with their favorite story about Ally. For example, this year she has been going one morning a week to the Humane Society to volunteer. Her group’s assignment is to socialize or play with the cats and dogs, to make them ready to go into people’s homes. Cats have always been easy for her to relate to, so she is a star here. But the dogs she is not so sure of. She refuses to go up to them, preferring to sit quietly and let them approach her. Smiling, her instructor enjoys telling us how most of the dogs eventually do find their way over to her. Even the most timid dogs, including one old blind dog, find their way to where she is sitting and allow her to gently pet them. Once again, we can only marvel at the love that she brings to the world.

Ally has her playful side, too. She totally loves to tease us, tickle us and find ways to make us smile. Her favorite family activity is having supper with her family and watching her favorite movies such as “Mary Poppins”, “Flipper” and “Angels in the Outfield”. She also enjoys visiting with her grandparents, aunts and uncles and cousins.

She used to be a lot more stubborn, especially when we wanted her to do something and she wasn’t interested. But now that old stubborn-ness rarely arises, and she is much more flexible in her approach to life.

Ally has had some health issues, which we have been successful at finding medical treatment. God has guided us to the right doctors and programs to be able to help her.

There have been other kinds of difficulties, mostly related to finding the right kinds of services, but with prayers and perseverance, God has helped us find them in the end. We have had our little crosses to bear: occasionally there have been odd looks from strangers, or nasty comments from people who should have known better (even from extended family members). People occasionally ask whether we had the testing. I just say, “No, it wouldn’t have made any difference. We would have wanted her anyway.” I figure I can do my little part to teach the correct attitude to have. When we are in public, most people that encounter her look upon her with a mixture of joy and pleasure. I guess that they are just surprised that a person with Down syndrome could have a happy, even joyful life. It is just a wonderful thing to see.

Ally is currently working at a day program, which she thoroughly enjoys. She does many different assembly tasks, for which she receives a legitimate paycheck. At that program, she also takes classes in math and reading, does exercise, and volunteers at the Animal Humane Society. She enjoys riding her therapy horse, Stormy, at her weekly riding program. In addition, she also goes to TOPS meetings with her friends, does softball and basketball with Special Olympics, and attends regular church services with her parents and friends.

Ally is a very healthy, active, responsible and contributing young lady. She has an important place in the world, with a family, a job, and many friends. She knows how much we love her, and in return she has taught us how important it is to completely love others just as they are, not as they “should” be. When she was very young and occasionally while growing up, I frequently would ask God, “Why did this happen to me, Lord? I have a brother with special needs, and now I have a daughter. It just isn’t fair.” The light of understanding seemed so far away. But, during her years with us, I slowly realized that God has given our family an opportunity to enjoy her amazing gifts and talents.

We are all glad that our family didn’t miss the pleasure of knowing Ally. In the past couple of years as I see the beautiful person she has become, my daily prayer now is, “Thank you, Lord, for the gift of Ally, and protect her from all evil.”

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-The support, information and encouragement provided by the PPFL parents is not meant to take the place of medical advice by a medical professional. Any specific questions about care should be directed to a health care professional familiar with the situation.