Thursday, January 21, 2010

Check out my new teeth

I took this photo today during Alex's double therapy session. She has physical therapy once a week and then once a month we have a home visit from a teacher of the visually impaired. She comes to help us learn the best ways to enhance Alex's sensory experiences and learning.

I think we've mentioned this before, but just to give a little history, Alex's vision is fine however she does have some issues with eye function most likely caused by her Spina Bifida. Early last year her PT noticed she was having difficulty looking to her right side along with some other issues so she had a vision test and functional vision evaluation done. She was diagnosed with two functional issues and the doctor recommended we take her twice a week to an infant and toddler class offered through Anchor Center for Blind Children. It's a non-profit organization dedicated to providing early intervention and education to blind and visually impaired children throughout Colorado. The center is amazing. It was built in 2007 and it's about 2 minutes from our house. When I took her there for her initial visit last summer they had us wait in a dark room filled with lights, textures, and sounds. As good as this option sounded to us (and Alex too who I'm sure would like to be around kids her age) we couldn't risk Alex being exposed to so many germs. We've settled for home visits for now and maybe this summer she can attend class.

Did you check out those two front teeth. Alex got those for Christmas :)

Saturday, January 9, 2010

Welcome to Holland


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.


I've read Welcome to Holland before but Aunt Genell recently emailed it to us and I thought it would be appropriate to share as we start a new year. This past year has been a big one for us and felt like a roller coaster ride. So many ups and downs and so much we didn't anticipate (like 9 ER visits, 7 inpatient hospital stays and over 50 outpatient visits). We knew that having a child with special needs would be different and would take adjustment. We also knew we'd have good days and bad days. Despite spending so much time at Children's, if you've followed our blog you can tell we've had far more good days than bad, and the bad days just make us appreciate the good ones even more.

It's true what Emily says about learning a whole new language and meeting new people. We've definitely had a medical crash course the past year and we continue to learn the language of insurance and medicine. We've met some very amazing people. Alex has had extra special care from Miss Leah and Miss Amanda and so much support and prayer from The Holmes family hundreds of miles away. There are so many people that have helped us along this journey we couldn't possibly name them all here. But there are a special few (outside of family and close friends) that have inspired and touched us in a special way: Trevor, Amber/Alli, Lacy/Autumn, Jenene, The Day family, and everyone from SFC. Thank you all for helping us along the way.

We look forward to a new year, growth and most of all Hope.