Some of you remember the poem that I posted when Amelia was first diagnosed, "Welcome to Holland." This is it.............
(((Welcome To Holland
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 to Italy. You buy a bunch of guidebooks and make wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may even 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 suppose to be in Italy. All my life, I've dreamed of going to Italy."
But there's been a change in flight plans. 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 guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would have never 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, 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 go away, because the loss of that dream is a 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. )))
This post is blunt and truthful. While I do feel blessed to have Amelia, I need to take a moment to vent. Today I realized that "I am in Holland." Yes, it has taken me this long to really interpret and fully realize that this journey with Amelia is going to be different and at times difficult. We went to the Atlanta Speech School today to tour the toddler class that Amelia will be in next year. Amelia is going to need lots of therapy this next year in order to get her to really verbalize. I started thinking to myself that all of us parents that sat in the room together today are in "Holland." While it is comforting to have a support group, I just keep thinking that I DON'T WANT TO BE IN HOLLAND. I don't want to be the "chosen parent", I don't want to be the "God must think you are special and can give you only what you can handle." I don't want to be in Holland.....I just want to be in "normal Italy." I worry about how our family with handle everything and I worry about how Amelia will handle everything when she is older. I dread the day when Amelia will have a moment where she will say that this is not fair. I don't want to be in Holland but I know that over time I will be ok here.
-Scarlett
p.s. pictures are from music therapy and Grandma Plunkett took Amelia to school this week.
I'm glad you finally hit the angry stage. Took you long enough. ;) Welcome to Holland. We have lots of tall, cute, blond men here. At times it ain't so bad.
ReplyDeleteHonestly though, I just wanted to let you know that I've spent the last three and a half years wishing away autism. For a long stretch, we read a book every night about making a wish on a star. Every single night I would whisper to Laney, "I wish there was no more autism". Just last night I had a talk with Charlie about what he thinks about his sister being "disabled". He said that "sometimes it's annoying but I still love her." How big of him, right? Then I asked "Do you think I treat you both fairly? Do you think you're being cheated of something because you have a sister with autism?" He got teary-eyed and said "whew... that's a tough one. I know you love us both and even though we're different, it feels like you treat us both the same." Charlie has the most open giving heart and I think so much of that is owed to his sister's "disability". He's protective and caring and incredibly empathetic.
My point is, just last night, Greg and I lay in bed talking and I said to him "I've spent the last three and a half years wishing all of this away. And now, I don't think I would trade it if you asked me to. I have the kids I have *because* of their strengths and shortcomings, not in spite of them." It truly *JUST* occurred to me that I don't want to leave Holland. I've been sad, mad, pitiful, pissed, disgruntled, frustrated, depressed and angry since I've moved in but I've finally made my home here and I'm happy. I've become proud to be the "chosen parent".
I hope it doesn't take you three and a half years to move all your stuff in but I know you'll get there eventually. Along the way, if you need help speaking the language, I'm a great listener. ;)
hugs,
Meredith
I never had intentions of being in Holland either, but when I think about being somewhere that was not planned there is no one that I would rather be there with then you! You are the strength and backbone of our family (not just cab driver) you have provided for our children in ways that I am continually amazed. Our family will continue to handle this with incredible passion and faith. Just remember for every trip that you trade in your also missing out on a chance of a lifetime! The song I think about when I see Amelia is Garth Brooks “Some of Gods greatest gifts are unanswered prayers”. We have to remember not to be taken down by all the smaller things or we may miss out on the miracle in front of us. Look at how loving your other children are (outside of their beating each other), how accepting, how protective, and how much they will grow from their sister. All of this is a tribute to you and how wonderful you are in teacher and caring for our children. I know this is tough, hard, and stressful, but at the same time I feel that we have grown immensely as a family and I feel like Amelia has already helped me to become a better man and a more appreciating father and husband. I love you for all you do! You are truly amazing!
ReplyDeleteI read this essay a while back, and I don't know how much I related to it then, but I do more so now. And I agree. I think we'll be okay too, but it takes so much time to adjust. It's hard, and it's not always fun, and I'm tired of being the only "bad guy" who works with Blair and makes her practice all the time. Now we're on the verge of implanting and entering a whole new world of fear -- and good days too!
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