Warning, this is a long post. Grab the big mug of coffee.
Brooke’s post on finding out about Jonathan’s diagnosis of Down syndrome brought back memories of that surreal period; when we found out we were not on the road we thought we were on.
For me, everything was clicking into place. I was a late bloomer. I spent my 20’s skiing, rock climbing, and mountain biking in the mountains of New Mexico and the California Sierra. When Brooke captured my heart and dragged me to Green Bay, Wisconsin, only then did I get serious about my career. While she worked as a news anchor, I raced to complete my degree. Following school, I landed a job as an analyst and began a very successful second career.
Perfect Charlotte was born 18 months later and while I was contemplating graduate school, Brooke was contemplating another child. I was on the fence. I was wary of the risks. But we are a team, and it was important to Brooke.
My career was progressing well but it was clear to me that I was not going to realize my goals without an MBA from a top school. In the spring of 2002, I applied to the University of Chicago Graduate School of Business to attend the weekend program. This was the only competitive part time option for someone in NE Wisconsin. I waited for acceptance.
In July, I received the news: Accepted! In the fall, I would begin taking classes on Saturdays in downtown Chicago. I don’t think my feet touched the ground for 3 weeks. For me, this wasn’t just acceptance to a top school, but a personal achievement; and acknowledgment of my capabilities. This meant A LOT to me; this ski bum turned businessman to be accepted to a highly competitive top five program. It also opened the door to dreaming about what the rest of our lives might look like in terms of salary, location, status, and on and on…
Can you tell I’m competitive and ambitious?
So floating on this cloud, I followed Brooke into the doctor’s office for the ultrasound. These are nervous visits because when you go due to “advanced age” you know there is a more than small chance that you might get news you don’t want.
I can’t describe the vibe in the doctor’s office better than Brooke did in her post. Something was not right. When the geneticist finally came in with the stats “…hole in the heart…chances of Down syndrome….pinky finger curved…markers…” vision blurring, ringing in the ears, no. no. NO! this is not happening, I am not hearing this!
We needed… I needed certainty. The only way was an amnio. The Doctor assured us that by monitoring the procedure with the ultrasound it was very safe for the baby. I needed to know. We wouldn’t know for 10 days.
I recall this was late in the week, and we were heading to my family reunion the next day. I said to Brooke, “let’s go now.” So we called in sick and headed to western Michigan via the northern route. When you head to the other side of Lake Michigan, you can go through Chicago, or go across the top of Michigan. People, or no people. We didn’t want to see anyone, so the desolate north was a unanimous vote. We were less likely to see anything that would remind us of how ugly and cruel the world can be.
The pity party begins.
I have a nephew with significant birth defects. Before age 2 he had countless surgeries to reshape his skull, fix his hips, and on and on… To this day he remains significantly delayed and requires assistance for the most basic tasks. Caring for him has been a terrible hardship for my brother and his wife, affecting all aspects of their lives. It was this extreme vision I had as I contemplated a child with special needs.
The doctor warned us off searching the internet to find out about Down syndrome due to the few, but very misleading sources of information. So at this time, we were clueless. We told our family what we were dealing with–official results wouldn’t be known for a week. They were sympathetic, but no one knew how to process it. First, it’s not official so lets remain hopeful. And even if the baby had Down syndrome, no one knew what it might mean. We salvaged the week.
When we received the official results, I was devastated. I couldn’t see the future. All the dreams I had, the vision of where my life and career would end up was shot. (Remember my vision of special needs.)
I moped for several weeks. I let close friends at work know. Many said they were sorry. They were supportive, but no one knew what it meant. I reassessed graduate school. I decided that since the baby was due in December, I could at least complete, or nearly complete one quarter. So at least I would have that experience.
I can’t tell you how distinctly I remember this…and I hope it always remains vivid.
I popped into one of my co-worker’s cube and after some small talk, and during the update on the pregnancy let him know that the baby had Down syndrome. Without hesitation, he said “Congratulations! Those kids are awesome!” I was literally shocked at his sincerity. He didn’t say this to make me feel better, he said it because he believed it. After a moment I asked “oh yeah? How do you know about this?”
“I volunteer for Special Olympics every year. You have to get involved. I love these kids. They’re great!”
Over the next 24 hours I made a transformation that hasn’t reversed. I thought, maybe it will be great. All the odds of the health issues; what if (besides the heart issue) he wouldn’t have any issues? What if he is at the high end of the cognitive spectrum instead of not? Perhaps my own life–our lives, our plans–wouldn’t be interrupted as I feared.
I decided that until proved otherwise, I would assume that having a child with Down syndrome would be great.
Now I won’t pretend that I don’t have bouts of doubt and worry, but for the most part this attitude has carried me through. Of course, Jonathan makes it easy. Not a day goes by where he doesn’t fail to make me laugh out loud. His smile is infectious. His unembarrassed love for his big sister, mom, and friends causes me to pause and think “I need to be more like Jonathan.”
The tag line of our blog is Spreading awareness about the blessings of Down syndrome. This may seam odd to some. How can this be a blessing? Time will tell if we conclude that it is a blessing for Jonathan, but for those that know Jonathan, it is a blessing. Jonathan teaches us to love, to smile frequently, to see the beauty in all people. Don’t we all wish to have a memorable and positive effect on those who know us? Jonathan is seven and already has that box checked!
Jonathan has made me a better person. He has taught me patience. He has taught me to value the gifts that everyone possess, not just the standard measures of intelligence, status, education, job title. He is teaching me to be kind.
I’m still pretty ambitious. I finished graduate school. My career has taken off and I have reached many of my goals. Along the way, Jonathan has caused me to add other goals: to have a positive effect on others; to serve. These boxes are not yet checked complete.
If I were to have the same positive effect on someone that Jonathan has had on me, I would consider myself a pretty special person. One of the ways I try to do this is to say to every parent of a child with Down syndrome:
“Congratulations! Your kid is going to be awesome!” …and you know what? I’m right!