What I want you to know about how wonderful it is to have a child with down syndrome
What I Want You to Know is a series of reader submissions. It is an attempt to allow people to tell their personal stories, in the hopes of bringing greater compassion to the unique issues each of us face. If you would like to submit a story to this series, click here. Today’s guest post is by Nora.
Yesterday my son Kelly came with a special gift for me. He had carefully picked me a lovely bouquet…of dandelions. I have a bunch of kids, so this was not my first bouquet of dandelions, but it was my first bunch from Kelly. As I was putting the vase on my windowsill, it struck me how these particular flowers could actually be used as a metaphor for Kelly’s presence in our lives.
Kelly arrived after my 3rd uneventful pregnancy and uncomplicated home-birth. When he was born he did not make a sound. Not one sound.
He just gazed at me. Even though I knew this was not “normal,” it was absolutely amazing.
The midwife recorded his apgar and then gently suggested we head to the hospital to get him checked out. In retrospect, it is obvious that she knew right away that something was amiss, but didn’t feel it was her place to make the diagnosis, or maybe she just wanted to let us bask in the post-birth bliss for a while longer.
We decided to travel to a larger hospital over an hour from our home to get Kelly checked out. Having all of those post-birth endorphins raging through my body, I did not for one minute think anything was wrong with my baby. When we were finally seen at the hospital, the doctors all exchanged knowing glances, but I was still oblivious. Halfway through his examination, Kelly had an apneic episode (he briefly stopped breathing) and was rushed from the room. They left us sitting alone and stunned. A few minutes later a group of doctors returned to the room and gave us Kelly’s diagnosis: Down Syndrome.
All I can think of are cliches to describe the moment: I was blindsided. The wind was knocked out of me. The bottom dropped out. They all fit. The doctors left my husband and I alone in a stark, strange hospital room where we wept and held each other, stunned and disbelieving.
Kelly had to be admitted to the hospital to be monitored for a possible heart condition. I felt like my world was falling apart. How could this be? Why us? We can’t have a handicapped child…can we?
And yet, he was my baby.
In the NICU filled with teenie, tiny premature babies, there was jumbo Kelly (he was 8.5 lbs) lying there all pink and cute. Thankfully, he took to nursing right away and the wonderful nurses made sure we got plenty of private time. I was in love.
When Kelly came home to his brothers, I took the oldest aside to explain about Kelly. I was a bit nervous about this. Luke was 6 at the time and already very intense. I explained that Kelly might take a bit longer to crawl and walk than his younger brother had and that things would go at Kelly’s own special pace. Luke just looked at me, looked adoringly at Kelly and simply said, “OK, Mama.” He walked away and went on playing.
Those two words, “Ok, Mama,” taught me one of the biggest lessons of my life: We were still given a gift. It may not have been the gift that I was expecting, but it was still fabulously beautiful and if I shifted my attitude away from the drama and into the awe, all would be well.
Kelly is now 12 years old. He delights us everyday. Yes, he can be a challenge at times, but not any more than his “typically developing” siblings.
In fact, Kelly is our greatest teacher. He lives fully into the present every single day. He doesn’t lament the past or yearn for the future. He is just focused on what is fun this very second. He does whatever strikes his fancy most of the time and doesn’t give two hoots about what people think of him. Wear my sister’s black patent leather high heeled boots to the school craft fair? Why not, if I like them? Break into an impromptu dance in the middle of downtown when I hear some music I like? Why wouldn’t I?
This kid has it made.
Some people still feel pity for Kelly and/or our family because of his Down Syndrome. These are the people that do not/will not get it. I will never forget a visit I had with a local health professional. He was taking my health history and I mentioned I had a son with Down Syndrome. He sighed with a weight of sadness and said to me, “What a struggle.” Now when Kelly is skipping around singing or dancing to some music he loves, my husband and I just look at each other with a smile and say “Yes, what a terrible struggle.”
Another time, when I was pregnant with my fourth child, Kelly’s physical therapist asked Kelly’s older brother Calvin if he wanted a brother or a sister. Calvin quickly replied that he wanted a girl with Down Syndrome. While I found this reply completely adorable, the therapist surprised me by looking at me sympathetically and saying, “He doesn’t understand what that actually means.” Wow, I was floored. I didn’t have the guts at the time to respond, “No, you don’t.”
We should all envy Kelly. He is truly free. No one expects him to study hard and get a stable job and make lots of money and pay the bills and take care of the kids and blah, blah, blah… He never has to get on that wheel. Of course, none of us do, really, but things happen and the expectation is there and one-thing-leads-to-another and suddenly you have a mortgage and two kids and things ain’t so free anymore.
My point is not that a “normal” life is dismal. I happen to live one that is full of joy (even with the mortgage). It is just that this alternative life looks pretty appealing, too. We get so stuck in thinking that there is only one way to live and anything other than that must be inferior.
Like a bouquet of dandelions. Who says that cheery little flower is inferior to a rose or a daisy? Not Kelly. He just picks them and smells them and presents them proudly without caring one bit about the overall health of the perfect lawn. Then he will spend the rest of the day doing whatever strikes his fancy.