Thursday, February 24, 2011



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.
c1987 by Emily Perl Kingsley. All rights reserved

I found this "poem" in the things our nurses at The Med gave us when we left for Dell Children's. Connie, one of our nurses, wrote us a sweet note about her son,13, (he was born deaf) and how she was given this when he was born. It was comforting knowing she knew some of what we were going through. 

I found it about a week after we left and have thought about "Holland" every day since.
Those times when there's a loud noise outside and Auggie doesn't react
or when I'm vacuuming 
or when I was reminded of being pregnant and thinking how Auggie wasn't bothered by the loud music at the bar
or when I noisily walked up to him in his crib and scared him so bad he almost cried
or when I think about our friends' kids
or when I'm out at the store by myself and see other couples with their little babies 

it all just seems so hard so I push it out of my mind.

I don't like thinking or talking about Auggie having TCS but I know if I don't talk about it, I won't be able to hide my feelings much longer. I've slowly opened up to some people- mostly through emails and texts- but seeing some of Julie's Facebook Notes have made me really think about who I should talk to. (Thank You Julie B.!) I've been trying to write in my personal paper journal more... making it less about what has been going on in my life and more about how I've been feeling but I figured if I'm going to start feeling emotionally better, it might help to write some in our family blog and talk to someone.

I understand it is not the end of the world that Auggie has TCS but it's like Kingsley wrote... I was just expecting something different... much different. I was expecting the overwhelming joy of having a baby and to have all the happiness to surround our family for some time after Auggie was born. Have all our friends and family come over and "oooh" and "ahh" over the little baby. Be able to Baptize him in the same church Tim & I got married in and have a nice celebration, again, with those same friends and family. Instead we had so much stress and some bad news crowd the happy event of his birth. He has only met a handful of people and his cousins have hardly gotten to see him. I also understand that Auggie could have a much worse case of TCS... I am very grateful that he doesn't. It is still just really hard to deal with the fact that our little boy will have some hard times ahead of him and Tim & I won't be able to relate to him as much. I know people have been through much worse and dealt with it differently but it is still hard (for me, at least) to go through. 

I'm at the point where I'm tired of being fake happy. I'm tired of saying everything is great. Of course, I couldn't be happier that our little Auggie bear is sleeping great and eating well. I just know something is different inside myself. There's always something nagging at me on the insides. I'm tired of feeling anxious when people come over and most of all I'm so tired of crying. 

So this is another time I'm going out on a limb. If you know me well, you know I don't pour out my emotions for anyone... This is hopefully the first step towards a happy Kelsey.


Gramma was here Monday through Wednesday. It was nice having her in College Station since she spent the last 2 weeks in Krum with Nathan, Jamie & Zach. Nathan had his 2nd birthday over the weekend (can't believe he's TWO!). For his 1st birthday Tim & I were the only ones in the family to make it up there (Dallas had all that snow again)... and then for this year, we were the only ones in the family to not be there. 

Tuesday, Auggie had his last RSV shot. Er, well, it was supposed to be. The nurse said since the hospitals here were still receiving RSV cases, they are coming back in March for another round for their patients. I guess we'll see if our insurance will approve another shot. I can't believe how expensive it is for just one shot!!

The speech therapist comes tomorrow so we'll see how that goes. And then March begins our month of doctors appointments- Dietician, ABR hearing test, 4 month check up, Craniofacial check up.

Auggie checking out the light on the "key"

Smiling for Gramma

Sleeping great for Daddy while Mommy & Gramma go shopping

In memory of a little girl named Maddie who loved big bows
Well, mostly Kelsey on this one ;)


  1. The hardest moments, for me, were walking the maternity ward halls after my c-section, holding onto my husband, and seeing all those giant beautiful portraits of new born babies decorating the walls. I wanted to rip them all down. We were both so solemn, in our own little world, resentful, and mourning the perfectly health baby we were so desperate for.

    Two years later, I'm so busy with perfectly, wonderfully, normal, terrible toddlerhood that I just shake my head at how scared I was. If I only knew! lol


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