This weekend I was organizing a notebook to keep track of the letters and information from the various doctors and specialists Owen has seen as well as the resources and curricula we continue to receive from TEIS (Tennessee Early Intervention Service). We have a coordinator from TEIS who comes to our home monthly just to check up on us and make sure Owen keeps on track with the goals we set for his development with regards to his hearing loss. We also have a developmental specialist, also from TEIS, who comes to our home once a week to work with us from a curriculum to show us how to interact with Owen in order to help him develop his listening skills. These are free services from the TEIS program, and I have been impressed so far. We also saw an audiologist/speech pathologist at UT this week who recommended we enroll Owen in speech therapy once a week there. TEIS works as a secondary to your medical insurance, so even though Cigna doesn't cover speech therapy, TEIS would pay for it. We just need to decide whether this would be overkill as adding another weekly appointment to the calendar could be pretty stressful and it sounds like it would be very similar to our weekly TEIS appointment, at least right now until Owen is a little older. So, we'll be talking to various people about that as we make that decision.
Anyway, the point of this is to say that in organizing this notebook, I found a story that the developmental specialist gave me at our first appointment and I just read this weekend. I thought it was pretty good and wanted to share it here.
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 your 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 supposed 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. -Emily Perl Kingsley
Now, Owen's disability is very manageable, and, in time, through the use of his hearing aids (and assuming his hearing loss doesn't get any worse) I imagine it will become second nature and we'll almost forget he has a disability at all. I also know that God prepared me for this journey throughout my pregnancy, as He kept telling me that somehow things with this child would be different. But, I liked the analogy in this story and I think it could be applied to other things in life besides raising a child with a disability. I am so very thankful for this life and these children I have been given, and I will try to remember when everyday life gets difficult that I am blessed.
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 your 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 supposed 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. -Emily Perl Kingsley
Now, Owen's disability is very manageable, and, in time, through the use of his hearing aids (and assuming his hearing loss doesn't get any worse) I imagine it will become second nature and we'll almost forget he has a disability at all. I also know that God prepared me for this journey throughout my pregnancy, as He kept telling me that somehow things with this child would be different. But, I liked the analogy in this story and I think it could be applied to other things in life besides raising a child with a disability. I am so very thankful for this life and these children I have been given, and I will try to remember when everyday life gets difficult that I am blessed.
3 comments:
What a touching, well said letter. I just have one question...what were you doing online at 2:43 AM?? :)
Owen is now sleeping until around 5AM, but I guess Kate was feeling left out of the action, because she woke up last night and yelled for Daddy. Of course, I wake up more quickly than James (and I didn't want her to wake Owen if she continued to yell), so I went to her and then I couldn't go back to sleep. Thankfully, James gave Owen his bottle at 5AM, so I finally went back to sleep around 5:30. But, sleep is getting better in general.
This is a great blog. I hope you'll consider adding it to the aggregator at Deaf Village (www.deafvillage.com) -- we'd love to have you as part of our community!
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