What the Piece of Paper With My Son's Down Syndrome Diagnosis Should Have Said
I was cleaning out my closet today, sorting through old clothes, photographs, boxes of odds-n-ends. The kids were happily running around the house playing with each other and being about as loud as a herd of elephants wearing microphones. They came running into the closet, scampered around the mess for a moment or two and then turned to run out. Gabe bumped into the chair that I was perched upon, so I had to let go of the box I was holding to steady myself. I reached down to pick up the papers that had been scattered and stopped.
I recognized it instantly. It was creased and wrinkled. There was a spaghetti sauce stain on the corner and ink smears where my tears had fallen onto the paper. I opened it up, smoothed it out and took a deep breath. I knew what it said, I had read it enough times that I practically had it memorized. It was given to me tucked inside a manila folder and placed in a binder alongside pamphlets and informational flyers. It was a paper, one that altered the course of my family’s lives.
47, XY, +21, abnormal karyotype. Analysis shows three copies of chromosome 21 (trisomy 21) in each metaphase cell examined consistent with the clinical diagnosis of Down syndrome.
Common manifestations include mental retardation, cardiac abnormalities, small stature, gastrointestinal complications, hearing and/or visual disorders and hypotonia. Social development is typically more advanced than intellectual development.
There is a greater than 30% risk for fetal loss in the second half of pregnancy. There is an increased risk for chromosomal abnormalities in subsequent conceptions.
It said to me that my child, my son, was abnormal on a cellular level. That he would face physical and intellectual challenges. That there was a chance I would not get to meet him. And it said that it could happen again.
It said things that made me not just cry, but sob uncontrollably. Things that made me go through the next several weeks worrying about the safety and well-being of the baby growing within. Things that painted a drab and dreary future of abnormalities and complications.
Oh, how wrong was that paper.
What it should have said was:
Congratulations! It’s a boy. His cells are more unique than most of the ones we see. Inside of each and every one of those microscopic discs is an extra twenty first chromosome. While the addition of this extra chromosome may make it more difficult for him to do all the things that children without Down syndrome do, it does not mean that he can’t. It does mean he will find his own way to do them, and he may do them at different times than children lacking this extra chromosome.
While this little extra piece may seem daunting and overwhelming, included within it are some amazing things! There is a laugh that is contagious; it can fill a room and make even the most somber person smile and chuckle. There is a determination that will sometimes test the limits of even the most steadfast parents. But that determination will be used to accomplish many things! There is an infectious joy that passes from this one little person to all those around them. There are hugs and cuddles and kisses and snuggles that are absolutely unbeatable.
There are lessons tucked away inside that additional twenty-first chromosome. These lessons are best taught by the little one who carry them. Lessons on acceptance, unconditional love, empathy, compassion and selflessness. Lessons that makes us view the world around us in a completely different light. Lessons that makes us stronger as parents. Lessons that remind us not to rush and to take time to enjoy the little things in life. Lessons that accumulate to make those around this little being just a little bit better.
Inside of this chromosome, there is an extra dose of resilience and drive, humor and personality, understanding and patience. There is strength, forgiveness, steadfastness and even temper! There is sweetness, fierceness, willfulness, and stubbornness. There is rhythm and dancing, silly songs and imagination. There is intelligence and brilliance, ability and accomplishments.
This chromosome’s effects are not just isolated to the one whose cells contain it. It will impact and touch all those who encounter this child. Hearts will be softened, perceptions altered and lives changed by this sweet boy. It will change you. You will learn more about yourself than you knew before. You will be an advocate, a voice. You will find a strength you didn’t know existed, a boldness that may even surprise you.
With this information may come a feeling of fear, worry, anger, disappointment, uncertainty or even guilt. It can be challenging to imagine what life will be like caring for a little one with so much extra inside of them. Take some time and be patient with yourself. Remember that the baby you are carrying is still the same baby; you are just one of the lucky ones whose child contains a little extra amazing.
So congratulations, it’s a boy!
A version of this post originally appeared on Hand Me Downs.
Have you seen the first film with a national release to star a person with Down syndrome? Check out the film “Where Hope Grows” today!