We're in Holland???

The first day of a babies life is so exciting.  Meeting siblings, family, mom and dad gushing with joy!  We had all that but also so many tears, fighting, and worrying!  The bright spot of my day was that Kierstin was coming to meet her brother!  I dreamed of this moment....my two babies meeting for the first time.  I had imagined her coming in my room with a big smile, I would gush with joy as she climbed onto my bed and reached to hold her little brother.

She was on her way to Buffalo and the hospital NICU was on restriction due to RSV.  They had a rule that no visitors under 16 could go in.  I had no idea of this rule until that day.  I had this Dr, who decided she needed to follow me around pretty much all day.  She was a Resident with absolutely no bedside manner.  She told me of this rule.  I said "My daughter will meet her brother before he goes into major surgery, and that is not up for debate"  So the hospital social worker came to see me (I love how the social workers feel they need to talk down to you, at least this one) and told me again of this policy, I stood my ground and said you can test my daughter if you wish, you may take the baby into another room, but they will meet and I am not allowing you to take him into surgery until this happens.  Finally they agreed that if she wore a mask and a gown she could enter the NICU to meet him.  Ok, now I am not sure why they felt the need to stress me over this while I was already under tremendous stress when later I find out they make exceptions like this from time to time.  Yeah that is just cruel!

I cried when they first met, not at all like I pictured it or how it should have been, but Kierstin masked up and got to see him!  She sweetly touched his leg and talked to him, I think Preston was comforted by that voice that he had been hearing oh so much while he was in my belly.  It was only for 5 minutes since that is all they would allow, but my children met that day and I will remember it always.

The next part of the day is a blur....I remember parts of it.  Saying good bye and praying over our boy outside the OR.  I was crying and I remember him whacking me in the eye with his IV....like he was saying, "knock it out mom, I am going to be fine!"  I prayed that God would send angels around him to watch over him in that room and I think that he did.  I remember Eric and I going back up to my hospital room to wait for him.  Kierstin was there.  At one point that annoying resident came in and I asked if they had done the blood test to determine if he did in fact had downs syndrome.  She decided to tell me then oh yeah the results came in from the amnio and he does.  That was an hour and a half into his 3 hour surgery....I know, nice that she could not wait to share that information.  I remember her then attempting for me not to have the blood test done having the geneticists come into talk to me (while he was still in surgery) to talk about Downs Syndrome. 5 people apparently are needed for this...I still demanded the blood test and then kicked out 3 of them.

Finally word came that surgery went well and we could go see him.  He was sedated but looked comfortable, I could not hold him the rest of the day or the next, but I sat by his bed crying, praying, thinking.  That was the worst thinking....thinking about the life I had dreamed of for him and how I would need to give up that dream.  I did not study Downs Syndrome, I was convinced my baby would be fine.  I did not know what all that meant.  I knew a few people with DS.  They were sweet and so happy, but this was my baby.  How would I protect him from this cruel world?  How would I explain this to Kierstin?  How do I explain it to him?

I think this poem explains it all...

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved
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.