Our first trip to Holland

And my second ever post exactly one year ago, a follow-up to my first post.  I actually posted 3 times on this same day.  I guess I had a lot to say!

Welcome to Holland

On September 11, Luke Nicholas and Olivia Lynn joined our family at 12:10 and 12:11 a.m. Pete and I were overcome with joy and emotion and couldn't wait to share the news. Since it was the middle of the night, we only called our immediate families. So far, all seemed okay until they told us Olivia would need to go to the NICU right away because she was having trouble breathing. Then came the moment that I will never forget. As the nurses were working on Olivia and preparing us to say good-bye to her for the time being, Dr. Gomez, the neonatologist, came to my bedside as I lay in recovery, still quite foggy from the pain medication. "I want to talk to you about Luke. We see some markers that would suggest he has Down syndrome." I cannot to this day imagine the look on our faces. Laura, Luke's nurse in delivery, helped us out for a bit after he came home from the hospital and became quite special to us. One day I would like to ask her to recount that moment because I honestly can't remember much past those words... "he has Down syndrome." I do remember Pete asking the doctor to give us a percent chance that the diagnosis was correct. Dr. Gomez was very kind and gentle, but she was a younger doctor and you could tell this may have been her first time breaking such news. She went on to say that they couldn't say for sure until the genetic tests came back from Mayo Clinic in a few days, but maybe it could be just that he's premature and the markers (crease on the palm, flat bridge of the nose, extra space between his toes, etc.) were false. In hindsight, I can see that they likely all knew for certain, but she gave us false hope for the next few days as we waited for the genetic results. I remember when I finally was able to sleep a little that night, closing my eyes and praying like I've never prayed before. "Please, God, let everything be okay. Please, God, tell me the doctor just doesn't know what she's talking about." For the next few days we waited, worried, hoped. Of course, there was still also the worry about Olivia as she was in the NICU on oxygen support, while Luke was actually on the regular mother/baby unit with us.

We knew the news was not good when a handful of doctors, social workers, and specialists came into our room and asked our visitors to leave. The results had come back from Mayo and Luke was diagnosed with Trisomy 21, the most common form of Down syndrome. As the neonatologist proceeded to explain exactly what that meant, I clutched Pete's hand as I tried to breathe. Breathe, just breathe, in and out, in and out. We tried to take in everything she was saying, but our minds were racing with all of the thoughts that I now know, after talking with other families who have been through the same experience, are completely normal. Will he ever get married? Will he ever be able to live on his own? How will other kids treat him? He won't ever go to college. How will this affect Jackson and Olivia? How could this have happened? How could our doctors have missed this when we were seen every week for high level ultrasounds by a high risk specialist? As I think about this last question, I tell myself that it really wouldn't have mattered. Unlike 90% of women (90%!!) who abort when given a prenatal diagnosis of Down syndrome, I would not have even considered that as an option. But it would have given us more time to prepare for and process the news.

We had told very few people there was even a possibility that Luke had Down syndrome, not because we were ashamed, but because we were holding on to the slightest hope that the doctor was wrong. Now we were faced with the arduous task of saying those words over and over... "Luke has Down syndrome." This was more difficult than we could imagine. One of the first things all of the doctors, specialists, and other parents said to us was that we would go through a grieving process. That we would be grieving the loss of what we thought our family would be, what we thought our life would be, what we thought our child's future would be. At first I thought that sounded a little dramatic, but I've come to realize that they were absolutely right. So the first step in the grieving process is denial. Well, when you're in denial, it's quite difficult to speak those words over and over. We faced the question of whether or not we even needed to tell people. But then would it seem as though we wanted to keep it a secret? All of these things weighed on our minds like a ton of bricks. Then, as we were trying to process how our lives would be changed forever, there was the fact that Luke started having serious health complications and was transferred back to the NICU the same evening the news was confirmed. I couldn't even begin to wrap my brain around the fact that he had Down syndrome because, at that point now, we were so worried about his health.  Thankfully, Olivia was doing much better and was released from the NICU just 2 days after Luke had been transferred there. We were so excited that she was released home with us when we left 5 days after their birth. It was such a bittersweet day, though, as Luke's journey home was a bit longer.

One of the first people I called when we found out Luke had Down syndrome was my friend Sharon. Her sister also had a toddler and then had twins, one with Down syndrome. I knew that she would be a great person to talk to and would know just the right things to say. She came to the hospital right away and brought us a lovely poem that I read almost daily. Whenever I'm having a bad day, this poem reminds me that our journey might be unexpected and different than what we'd imagined, but it doesn't mean it won't be just as beautiful.

Welcome to Holland

By Emily Perl Kingsley

I am often asked to describe
the experience of raising a child with a disability
to try to help people who have not shared
that unique experience to understand it,
to imagine how it would feel.

It's like this......
When you're going to have a baby,
it's like planning a fabulous vacation trip - to Italy.
You buy a bunch of guide books and make your wonderful plans.
The Coliseum. The Michelangelo David. The gondolas in Venice.
You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives.
You pack your bags and off you go.
Several hours later, the plane lands.
The stewardess comes in and says,
"Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? 
I signed up for Italy! I'm supposed to be in Italy. 
All my life I've dreamed of going to Italy."

But there's been a change in the flight plan.
They've landed in Holland and there you must stay.

The important thing is that they haven't taken you
to a horrible, disgusting, filthy place,
full of pestilence, famine and disease.
It's just a different place.

So you must go out and buy new guide books.
And you must learn a whole new language.
And you will meet a whole new group of people
you would never have met.

It's just a different place.
It's slower-paced than Italy, less flashy than Italy.
But after you've been there for a while
and you catch your breath, you look around....
and you begin to notice that Holland has windmills....
and Holland has tulips.
Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy...
and they're all bragging about
what a wonderful time they had there.
And for the rest of your life, you will say
"Yes, that's where I was supposed to go.
That's what I had planned."
And the pain of that will never, ever, ever, ever go away...
because the loss of that dream is a very very significant loss.

But... if you spend your life
mourning the fact that you didn't get to Italy,
you may never be free to
enjoy the very special, the very lovely things ...
about Holland.