Today has been quite the day.... quite the week for that matter and it is only Tuesday. (at least I got to watch Idol tonight!) Tim is on nights, my kids are out of control and I am just plain exhausted with a full week ahead.
I met with a woman today from an Organization called, Beginnings. When you have a child diagnosed with hearing loss, Beginnings comes out to talk you through all the different things you need to learn about; from how hearing loss occurs, recommendations and setting up speech therapy. It was a 2 hour appointment and could have gone longer if I had wanted it to. I have a dvd to watch and tons of information to read and digest. I feel like I am back in college!
Anyway, I feel a little overwhelmed at the minute, so if I break down crying next time you see me you will know why. Tim and I are also strongly considering going to Chapel Hill for Natalie’s treatments instead of having them done here in Charlotte. They are top notch up there. The downside, is driving... (3 hour drive one-way) for ALL appointments including audiology. I talked to the pediatric audiologist on the phone from there who is also the director of all the audiologists and she has been referred to by some as an “audiological God.” They have a team that does all the testing and audiology side of things before implants and then after implants, a team that only does pediatric cochlear audiology, so it is so much more specific. We have an appointment up there the middle of June to meet the ENT and tour the facility and look at how their program runs. Yes, it is a PROGRAM...
Also, by going there, we may qualify for some funding to help with her $4000 + hearing aids which we are under the impression our ENT office doesn’t participate in that funding program.
Sigh...
But, I wanted to share this beautiful poem/story the woman from Beginnings left with me. It is best used to describe what it feels like to have a child with a disability. It is called Welcome To Holland.
Welcome To Holland
By 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 gondola 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 the 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 a while and you catch your breath, you look around...and you begin to notice that Holland has windmills...and Holland has tulips. Holland has Rembrandts.
But everyone you know is busy coming and going from Italy... and they’re 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.
COMMENTS:
I liked that poem. You are so strong and such a good mother. I think it would be hard to drive three hours each way for appointments with three kids to boot, but it does sound like and awesome place. I hope that you get help paying for those hearing aids. You are going through so much... it is ok to cry.
Wednesday, May 19, 2010 - 08:34 AM
That is just beautiful! What a comforting story to help us realize that sometimes thing don't turn out as planned, but that Heavenly Father has a very special journey for each of us. I've had this lesson reinforced many times lately. You are another wonderful example to follow!!!
Wednesday, May 19, 2010 - 01:47 PM
Oh Melissa - I am sorry you cannot go to Italy - but Holland will be a wonderful place, and don't forget you have all of your family and friends to explore this whole new experience with you! We will do our best to help out! My love to you and little Natalie and the rest of your gang!
Wednesday, May 19, 2010 - 09:17 PM
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