Eleven?

Wow. January 3rd is here and once again, I am realizing how much I neglect this blog. Sorry blog, I will try and change that.

Back to January 3rd, a date permanently etched in my mind forever, still very vivid. That is our "Welcome to Holland" day (I will explain that later), eleven years have now passed since that day.

January 3rd, 2000, it was a Monday, just like this year. I was having what was to be a routine ultrasound as the doctor was unsure if the baby was breech or not. My husband was unable to come and at the last minute my sister, who was working not too far from the hospital, decided to join me for a baby peek. I will forever be grateful that God sent her to be there with me. We found out via that ultrasound that we were going to be walking a road that no expecting parent thinks they will ever have to travel. The road of a birth defect, in our case Spina Bifida. I had heard of this defect before, but was not educated on it. Well, an education we got, a 16 day crash course in "How much your life is going to change and sorry about your previous dreams for your family" type crash course. The very next day we were down to The University of Iowa Hospitals and Clinics. We heard many things from paralyzed from the waist down, bowel and bladder issues, learning disabilities, wheelchairs, bracing, surgeries, etc etc. All VERY overwhelming and very much not where we thought we would be. Many Dr. visits, ultrasounds and meeting specialists happened in that 16 days, almost every appointment my sister, Dawn joined us, to take notes, we were there to listen. I had a couple amnio's done to test for lung maturity. The plan was to have the baby as soon as the lungs were mature to prevent any further damage.

Backing up a bit. Spina Bifida is where the spinal column does not form properly, leaving the nerve endings unprotected in the spine. It is also one of the most highly aborted birth defects. Our baby had a sack that was on his back that contained spinal fluid and all those precious nerve endings that control the lower extremities, bladder, bowels, muscles, all those things that most take for granted. Our baby had an opening of 6 vertebra that were not formed, T12-L5, that's a large hole in such a little person.

We went in on Tues, January 18th for an amnio, we were told if the lungs were mature, they would call us and to be there the next morning for delivery. Sure enough we got that call. We had made the decision to have a c section to deliver, for the safety of that sack of nerves, so they would not possibly be damaged in a natural delivery. We did have a Dr. try and tell us a natural delivery was an option, I still cant for the life of me wonder why he would think we would want to damage those nerves, nerves that may be ok and still able to function properly when they were put back during surgery.

Delivery went well, minus the student nurse that passed out. Mr Jarrett Christopher entered the world at a whopping 9lbs 3 oz 20 inches long. I got a quick view of him as they needed to take him to the NICU to be evaluated and watched. As soon as he was stable and prepped, they were going to close the back up. He was 7 hours old when he had his first surgery, 7 days for the second. He had a 16 day stay in the hospital before coming home. Let me tell you, leaving your baby for the first time at daycare is NOTHING compared to leaving the hospital without your newborn.

Many surgeries, prosthetics, tests, wheelchairs and therapies have passed. All have changed our family in so many ways. And in so many ways I cannot even begin to explain how grateful I am to get to walk this road. This young man is too soon to be 11, I can't grasp how that does not seem right, that much time has not passed since that day we found out about our new path. But it has. And he is a remarkable boy, tender hearted, funny, smart, has many people who know him, and has a smile that will melt your heart, not to mention eyes that draw attention. Even though there were many times I have asked God, why us? I know I wouldn't change it for anything.

Back to my Welcome to Holland reference, there was a poem that I came across after we found out of our new road we were to be walking with that name here it is and I love it each time I read it still.

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.