Down Syndrome Information: A Personal Account
Danielle and I first met about 12 years ago. It was a fairly raw time for both of us, emotionally. I had just moved to a new city and was in a somewhat tumultuous and confusing place in my life and Danielle was recently recovered from open-heart surgery, the mending from which has been long, painful, and incredibly complicated.
She was a student at a school where I was working. The relationship we developed there would expand and transform in a very fluid way, and at a very steady rate, over the next several years, ultimately becoming one of the most significant in both our lives. She became a part of my family, and I became a part of hers.
Danielle was born with Down syndrome, and with a host of resulting medical and developmental problems. She came into the world a tiny, joyful baby and very immediately had that joyful countenance put through unimaginable tests.
Danielle is legally blind. She has no depth perception at all, and her acuity is nearly impossible to measure.
As a toddler, she spent eighteen months in what is called a “halo cast” after spinal surgery. A halo cast is a large metal device that encircles the face and skull and is bolted to the head at the temples. Metal bars extend down from the frame and rest on the shoulders, keeping the head and neck from moving independently of the rest of the body.
Danielle cannot walk long distances without her wheelchair. She cannot walk moderate distances with out her walker. She cannot walk more than a handful of feet without holding onto someone or something.
Danielle has a very serious heart condition. She takes medication every day, and has already undergone one complicated and painful open-heart surgery.
Danielle is developmentally delayed. She is not verbal, although she has some words and makes very communicative use of them. Developmentally, she falls somewhere in the three year old range. Her emotional engagement and intuitiveness, however, are so highly developed that they are off the charts.
Because of her medical problems, Danielle has had her life expectancy challenged several times throughout her life. It was not expected that she would live through infancy, and when she did, it was hypothesized by her doctors that she would not live past four or five years old. As she continued to outlive expectations, all the while her health status becoming more delicate and complicated, a simple truth became evident: Danielle was not planning to go anywhere.
It is my theory that Danielle is so emotionally and spiritually connected to the world, and to the people that she loves, that the complications of her body simply cannot compete with the force and will of her spirit.
And since her heart surgery, her body is getting a break as well. Although she is still very complicated medically, that procedure changed the playing field for Danielle, in the eyes of her medical team, and she is fully engaged in the game.
It was just after her long recovery from this surgery that Danielle and I entered each other’s worlds. We struck up an immediate bond, but as Danielle bonds easily with the world around her, it was not immediately clear to me how strong our connection was. As her life moved on, mine did as well, bringing us back into each others’ lives again and again.
When she chooses to connect with someone, Danielle has the ability to engage with people on a level that most are unfamiliar with. Although she is non-verbal, she is incredibly expressive and communicative, and is the most direct person I have ever met. If she wants you to remain in her company, she will remove your coat and your shoes, as she is clear on the fact that you cannot leave without them. If she is done with you, however, she will stand up and escort you from the room.
It is common among people with Down syndrome to possess very loving and affectionate dispositions. Danielle takes this tendency to the extreme. If she loves you, she can be made happy with nothing more than your company for as long as you can give it to her. Her ability to simply sit in a room with someone she is attached to is staggering.
She is also more empathetic than anyone else who has ever come into my world. She is like an emotional sponge, soaking up the joy and the sorrow of the people in her life. If she is with someone who is feeling happy, silly, mischievous, or experiencing any other positive and engaging emotion, Danielle will laugh until tears roll down her round, freckled cheeks. And if you are sad, or hurt, it doesn’t matter how effective the brave face you put on is to others, Danielle will sit down next to you, place a hand on your arm or leg, and just watch you with her big brown eyes swimming with support and empathy. She can sit this way for hours.
Danielle has been my hero and my strength so many times, for so many years. She looks at the world as a place of wonder and love, even when it can not understand what she is saying, or provide comfort to her in times of pain or distress. She casts people who are not positive forces in her life out of it, and holds those who love her close.
And she has the most profound respect for the magic of the Muppets, and the healing power of French Fries.
Because I have had Danielle in my life, I have a husband who loves me very much, friends who support me, and an extended family of loved ones with whom I am bonded to as closely as I am to those to whom I am related. All of these people came into my life because of my journey with Danielle.
She is my touchstone. She keeps me honest. She makes me grateful.
And she steals my French Fries.
More Information about Down Syndrome
Down Syndrome Information: What is Down Syndrome?
Down Syndrome Information: Diagnosis of Down Syndrome
Down Syndrome Information: Causes of Down Syndrome
Down Syndrome Information: Characteristics of Down Syndrome
Down Syndrome Information: What Special Care do People with Down Syndrome Need?
Down Syndrome Information: Frequently Asked Questions
