Thursday, October 16, 2008

I've been thinking...

I know. That alone is a scary thought.

But, seriously. I've been thinking a lot lately. I've been in quite a funk the last few weeks. I've been trying to figure out what the problem is. Why can't I seem to keep things under control like "normal" people? Then, all of a sudden, it hit me. Our life is so unbelievably far from "normal." Way back when, right after Olivia was born, I distinctly remember our pastor coming over to talk to us about Olivia's baptism. One of his final questions to us was, "How is it going being the parents of a special needs child?" Our response at the time - What do you mean? She doesn't really have any "special" needs. She's just like the other kids. Just a typical old run of the mill baby.
Oh, how times have changed.
I've always liked the analogy of Emily Perl Kingsley's description of being the parent of a special needs child in "Welcome to Holland."

WELCOME TO HOLLAND
byEmily 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.
I, personally, can't relate to the part about always longing for Italy and the pain never going away. Quite frankly, I could really care less if all of our vacations were to Holland. Maybe that's partially because we'd already been to Italy twice. We've gained so much by getting to go to Holland. We haven't lost a thing by missing out on Italy. Regardless, those of you who have only been to Italy have no idea what your missing over here in Holland.
It's wonderful. Busy, but wonderful. And we wouldn't have wanted to go anywhere else.
I think the last few weeks have just been too crazy. Pneumonia. Aspiration. Leaky mediport. Completely severed mediport. Then, on Monday, the doctor calls and says the hospital here is not able to draw her weekly labs in the correct manner, so we have to have them drawn in Peoria. Medicine at 6, 9, 12, 3, 6, 9, 12. Is this milk thick enough? Is she still aspirating? Why did she just cough? Why does she still sound "wet" sometimes after she eats? Olivia's therapists call to set up appointments and they have to remind me that Brooklyn has preschool, so that time won't work out. Geez. I can't even remember that Brooklyn has school!
I needed to take a step back an put my focus back where it belongs. Then, last Sunday at church, Pastor referred to a familiar verse from the Bible. I grabbed my checkbook (first thing I found to write on) and wrote it down on the back.
"I can do everything through Him who gives me strength." Philippians 4:13
Brooklyn asked what I was doing. I said I just needed to write this verse down, because sometimes Mommy forgets. So, I'm back on track. We just happen to be going through a season of life where Olivia's special needs are fairly significant. So, yes, people. I don't always have things under control. I do lose it every once in a while. This time it's just been for an extended period of time without much of a break.
I love you loads punkin'...but could you just slow things down a bit?!?

5 comments:

Janel Dranes said...

Thanks for the reminder. Having a special needs child of my own, that poem "Welcome to Holland" has always inspired me. I found it many years ago in an Ann Landers post. It sums up being the parent of a special needs child so well. Sometimes we just need to sit back and be reminded of how blessed we are. Thanks again!!!

Anonymous said...

Hang in there, Julie, this too shall pass. I think that as parents, especially mommies, we feel like we're supposed to be superheros and that we aren't living up to those expectations when we show any sign of weakness. It's good to be gently reminded that we can't do it all, nor should be we expected to. So you forgot about Brooklyn's school, at least you didn't forget Brooklyn :-) I don't often comment, but I do keep up & it tore at my heart to read your posting because you were so often the "Wonder Woman" of the PICU all those weeks up there-I always 'Wondered' how you did it? It makes me feel better to know that you too have "those" days. I don't think it's fair to call Livvy a 'Special Needs' child, she's got to at least be a 'Special, Special Needs' child, if not a million more 'Special's tacked on there. There's a reason she was picked for you and you were picked for her and I know that you know that. Find comfort in knowing that it's okay to be forgetful and feel as though you can handle no more. It's always the hard stuff that stands out in our minds and not all of the millions of great things that we do in our lives. YOU ARE HUMAN, just remember that. Please take time for yourself (I know, like when are you supposed to do that?), but try. Tell everyone I say 'Hi' and give Livvy a big hug from me.
Erika Tibbs, former PICU RN

Anonymous said...

Thanks for sharing "Welcome to Holland"; it is a wonderful analogy. It will certainly help me with my diverse learners in my classroom.

Judy said...

You always have seemed like "super mommy" to me. I always marvel at how you keep all the medical lingo straight and how Jack and Brooklyn seem so well adjusted despite it all! But I'm glad to hear that you need to take a deep breath once in awhile! You deserve it! God knew exactly what he was doing when he placed Olivia in your lives. He knew that Olivia was just what your family needed and that you and Zac would be the best parents for Olivia. This random verse in Exodus came to mind when I was reading your post. Moses was out in the desert with all the Israelites (after they had left Egypt) and they were being attacked by someone (Don't remember who). God told Moses to stand on a hill over looking the battle and hold up his staff to ensure victory. That staff had already parted the Red Sea, so Moses took this instruction seriously, but as the battle waged on Moses couldn't hold up the staff any longer. He couldn't do it alone. This is how the story continues "When Moses' hands grew tired, they took a stone and put it under him and he sat on it. Aaron and Hur held his hands up- one on one side, one on the other - so that his hands remained steady till sunset." God has also placed lots of people in your lives to help "hold up your hands." Let them!! I'm sure you get tired of asking others to help, but I'm certain that no one minds! Sometimes you might just need to find your own rock to sit on and let others "keep your hands steady", and if that means someone else remembering about Brooklyn's preschool, then don't worry about it!! You're doing great!

Anonymous said...

Julie,

You are amazing. I am typing through my tears. What an awesome mommy.