Our Babies

Our Babies
Luke and Claire

"Welcome to Holland"


By Emily Perl Kingsley, 1987. 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.

Sunday, May 23, 2010

Questions

Sometimes April and May feel like the longest months of our lives, while at other times we wonder where the time went. Two months ago we wondered what Luke would look like, how he would behave, and if we could handle the growing pains of being new parents. Family and friends constantly called, e-mailed, and stopped by to share in our nervous anticipation. Then, on the morning of his birth, a whole new dimension was added to our lives, a part we never saw coming.

When the doctors first gave us the news of Luke's diagnosis the joy of being first-time parents was temporarily shattered. The innocent anticipation of being first-time parents was instantly replaced with looming questions. How long would he have to stay in intensive care? Would he live a normal life? How were we going to tell our family and friends? More importantly, what would you all say?

Now, after countless phone calls and e-mails, meals, visitors from family and friends, we couldn't possibly be more grateful. Instead of looking at Luke's diagnosis as a misfortune, each and every one of you rejoiced in his arrival, prayed for a speedy recovery, celebrated his homecoming, and now each day you continue to follow his story here on the blog. In less than 5 weeks, over 3000 times you've all logged in to see Luke's progress and to offer your support and words of encouragement. For this, you will never know how much it means to us.
Last night when I was holding Luke in my arms during his 4 a.m. feeding, I realized several things. Luke looks just like his dad, widow's peak and all. He is a boy who likes his routine - feedings, play time, two poops in a row, and being snuggled back to sleep. Patrick and I can decipher his cries, handle getting pooped on, and make smooth trade-offs on responsibilities around the house. In five weeks, we have the answers to our simple questions from before his birth.

As is the case for any baby, the future remains uncertain. We may not know exactly when Luke will hit different developmental milestones, how he'll do in school, or what type of adulthood he may experience, but then again, no new parent knows the exact answers to those questions. Just as you all celebrated Luke's arrival with unconditional acceptance, your support allowed Patrick and I the chance to piece together our emotions and realize that not having the answers to these bigger questions is perfectly okay.

5 comments:

  1. Thanks for all the latest pics! Today's snapshot is one of my favorites...he looks so different! Maybe it's because his eyes are open! Good thing he likes his stroller, because Daddy LOVES Luke's stroller. I guess Patrick would just push it empty if Luke wouldn't adjust to it!

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  2. "Listen to the mustn'ts, child. Listen to the don'ts. Listen to the shouldn'ts, the impossibles, the won'ts. Listen to the never haves, then listen close to me... Anything can happen, child. Anything can be.” - Shel Silverstein...thought of this quote while reading your post. Love the truth in it not only for Luke and my babies, but for all of us!

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  3. He is so adorable! Love you guys

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  4. What a cutie! I can just hear my girls who are enjoying summer vacation right now! The girls are following the blog from home at this point. And yes, Patrick, I'm sure that the girls DID take notice of one of Baby Luke's latest ways to keep their Parenting education going! :~) I have not been able to read on a daily basis with the end of school things that had to be done, but look forward to reading along with my girls all the thoughts, experiences, and fun of your family throughout the summer! Keep smiling!

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  5. I just cried when I read this post! We all LOVE Luke and love you guys and would do anything for you. I can't wait to get down to Shreveport so I can see him!

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