Finding out

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!

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5 Responses to Finding out

  1. Molly says:

    Yes! I love your coworker for saying congratulations. That is NOT something parents of kids born with SNs hear! and they SHOULD.

  2. Lianna says:

    My husband, Terry, and I chose to have an amniocentesis for the same reasons. We had to know. The prenatal testing (maternal serum screening) along with my 18 week ultrasound gave me a 1 in 20 chance of having a baby boy with Down syndrome. When we did find out that Gabriel does have Ds, we imagined the “horrible” of it.

    The nights were the worst times for me — especially the first couple of days after the confirmed diagnosis. Anyway, one night, my sister called me on the telephone. She had recently given birth to the most beautiful little girl. I remember gasping when I first saw pictures of Rachel because she is so stunning. At that time, Rachel was only three months old. She was “everything” I wanted in my own baby. My perception was that I would have this “horrible” baby. My sister did not. Life was not fair.

    Anyway, in reply to my lamenting to my sister, she said that there were no guarantees in this life that something would not happen to Rachel that could disable her in some way. Would she stop loving her daughter? This is her child.

    I think I will always remember that because it was the turning point for me. As hard as it is some days for *me* to deal with Gabe having Ds, it doesn’t mean I don’t love him or even that I would want him not to have Ds. I can’t imagine life without him just as he is.

    He has the most beatific spirit about him. I don’t know how I could have been so shallow during those first few days after our amnio results.

    We still get strangers coming up to us, and remarking on Gabriel’s smile. This has been happening since he was a wee baby. He’s beautiful. And more so, he completely and unabashedly shines and loves to love. I needed him more than he’ll ever need me.

    Just love this post! (Sorry for the long comment!)

  3. Sam says:

    This entry had me smiling. i am so glad there are people like your co-worker! SO happy that he was able to give you the perspective that changed your life.

    When I was pregnant with my first, our “routine anatomy scan” revealed several soft markers for DS. Thickened nuchal cord. Curved pinkies. Something else and something else that I will never remember because after the first few things, I shut down. I remember that ultrasound like it was 5 minutes ago. Very similar to your experience. Ultrasound tech happy and jovial one minute, quiet and serious the next. “Congrats, it’s a girl! Oh wait, what’s that.” He kept ducking out of the room. Bringing in another tech, and then a doctor who delivered the news. He said he wished he could ignore what he saw, but he just couldn’t.
    Within the hour we were sitting in a genetic couselor’s office, strongly being urged to get an amnio. Cross referencing the ultrasound with the quad screen and throwing statistics in our faces. We felt pressured. They urged us to get it done before the weekend, because if we waited one more week we’d get the results too late to terminate by law.

    Stop. What? Terminate? Our baby? Because of these supposed markers? The GC telling us we were too young to be saddled with a baby with special needs. A baby that would grow to be an adult that couldn’t function on her own, would maybe even need to be “institutionalized” for her whole life. Reeling.

    We left that night, broken and defeated, but determined. I loved this child and no one would take her away from me. I braced myself, put on my “It’s ok” face and called my family. Most of them were quiet, sad. My mother did for me what your co-worker did for you. She said, “Children with DS have bigger hearts than anyone in the world. No one is going to love you more. You are so lucky.” (ok now I am crying all over again, that was the single best moment of my life, I believe.)

    We skipped the amnio. We operated on the belief that the baby had DS (we had really bad odds when paired with all of the markers and the quad screen). We prepared. We loved. We had other complications, including a constricted pulmonary artery which resolved itself before birth. A special team was in place in the operating room to take her cord blood for testing. But when she was born, we knew instantly that she did not have DS, they were all wrong. But I think the important part of our story is the transformation that took place while we assumed that she did, the people we grew into. Ours stories still have the same outcome – beautiful, happy children with loving parents.

  4. Sarh says:

    I was so happy to read this today. We had an NT scan done at 12-13 weeks in m last pregnancy that raised some concerns. Our daughter had some signs of DS but also had one limb that didn’t grow right and a heart defect that we wouldn’t know the extent of till later. We were so unprepared for anything to be wrong because there is no family history and we were both just 25 years old. We immediately went the next day for a CVS because I can’t handle knowing something is wrong but not being able to prepare. I needed answers.

    We waited that long week and got the results, they showed that there was no chromosome defect in our baby. The NT measurement could also be high due to the heart problem, but we wouldn’t know till later. We took this as great news and carried on. I went in for another u/s at 15 weeks, only to learn our great news was not so great. Our little girl did have a heart issue (more discovered at 20 weeks) along with a bunch of others. She had a diaphragmatic hernia meaning her organs had moved up into her chest cavity, hindering her lungs from growing and pushing her heart to the right side of her chest. She also had only one Kidney and it didn’t appear to be working. There was almost no fluid, which would also stop the lungs from growing. From this early on, it was as bad as it could get.

    We cried, we prayed, and we went back for more answers a couple weeks later. The results were even worse. I hadn’t realized that was even possible. We knew there was no way she would be strong enough to endure all the surgeries she would need, as well as waiting for kidney and heart transplants. So we chose to do an amnio and let her pass if that was what happened, we wouldn’t stop anything.

    My husband was deployed and so he came home early, and just a few days later labor began at 21 weeks. Because the CVS showed no answers, we paid for extra testing with the amnio in hopes of more answers. Ruth had a rare form of downs where she did not have a whole extra chromosome, but extra DNA on the pair she had. They can’t be certain but said its unlikely she could have survived this. They don’t think it was something we gave her, which gave us peace, but you can only have so much peach. When she was born we also decided to have an autopsy to see the true extent of all her issues. We had been trying for over 3 years and got pregnant with fertility treatment. If this was something caused by our genetics, we would stop and go straight to adoption.

    Months went by and we finally got some answers, but nothing definitive. Its ok though, I am confident we will have a healthy baby. We aren’t sure if her issues were caused by the downs, but we will never know.

    My baby was born at 21 weeks, and she lived just a couple hours. I held her, and I prayed for her. Although she never walked on this earth, she has touched so many lives and I am so grateful to have carried her with me as long as I could.

    My husband and I are pregnant again, but absolutely terrified. I can’t do any testing till the middle of October and these weeks seem to drag on.

    Thank you for sharing our son and your stories, I am so appreciative. And I completely agree, he is a blessing.

    God Bless,
    Sarah
    Ruth Marie – Born to grow Wings April 18, 2010

  5. admin says:

    Sarah, thank you for sharing you and Ruth Marie’s story. Congratulations on your new baby! Please let us know how things turn out.

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