Welcome to Holland

I found this on a support group page that a friend put me in touch with. I like how it describes some of the emotion of what it is like to have a child with a disability. It is still hard to tell people what it is really like. All the emotions that you do feel. How it changes your whole life. But it does a good job of making it more real. I also like how it talks about the disappointment that you feel when you find out about the disability. As a parent, you don't want to feel that disappointment in your own child, but the truth is that you have to mourn what it is that you have lost. That is something that we don't talk about a lot.

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 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.

2 weeks and counting

Coltons Implant surgery is 2 weeks from today. We received notification of his pre-op appointment the day before and it made it more real for me. As we get closer, I am starting to get the pre-surgery jitters. I am worrying about everything. I think that if I don't stop I am going to make myself crazy. We still feel that this is so important for Colton. As nervous as I am, I am still anxious for that moment when they will turn on the implants and he will hopefully be able to to hear my voice for the first time. I know that it will be a big transition for him. Hearing sounds that he hasn't heard in his 2 years of life will be overwhelming for him. I know that this isn't a "fix" for Colton. I am still going to use ASL and try to give him every bit of language that I can. But I am excited for this opportunity for him.

The bad news has been that Medicaid only approved 1 implant for Colton. We really need to implant both of his ears because of his auditory neuropathy. If we only do one, there is a high chance that it won't work well because his other ear would interfere because he does hear some sound. I have been told by other families that deal with auditory neuropathy that their kids describe it as "static." All these families have implanted both ears because the first ear wasn't enough. It is frustrating that medicaid won't pay for both ears. Especially because we are paying a monthy "spend down" to have medicaid. It isn't free for us. We are paying for it. They also don't care about the medical reasons for needing 2 implants. They just don't want to pay for 2. As of right now, we are still going to go ahead and do both. I don't know what that means for paying for it. I guess that is a battle we will have to fight later.

4th of July Family Celebration

The 4th of July has always been my favorite holiday. I love the history of our country. That a group of people got together and stood up for their rights and their freedom and won the rights that we enjoy today. With all the horrible things that go on in this world, I love to remember the good. I am so overwhelmed by all the good I saw. The people who waved out and shouted out Coltons name. By the woman on the side of the road who signed to us that she was so happy for our family. By the people who handed us money with well wishes. By the friends and family who stayed for hours in the rain and the sun. Who walked the long parade and carried cupcakes and cookies around the festival. The people who came to our booth and payed $20.00 for a single cookie. The 4th of July will always be a symbol of our freedom and for our family a reminder of all the wonderful people out there who give so much to help others.

Our crew getting ready to head out on the parade.

Colton didn't quite know what to think of the whole thing. He just wanted the candy that we were throwing out. But Hunter, Chase and Logan had so much fun throwing candy and waving to their friends in the parade.
The booth had so much stuff for sale. Most of it donated. I am so grateful for all those who worked so hard to make this happen.

Paypal

Thank you to KSL for doing a great story on Colton and the upcoming event on July 4. We are so excited to move forward with the implants for Colton and are so grateful to everyone who wants to help him. My husband has set up a paypal account to make it easier for some to donate. I have put a "Donate" button on the side of this blog under "If you Want to Donate." You can click that and it will take you to his paypal account. The information for his America First Account is also there if you want to do it that way.

We are so grateful to everyone who has helped us with this.

UpComing Fundraisers for Colton

Take a look below and check out our upcoming fundraisers for Colton.

4th of July Family Carnival and Parade

Monday, July 4 · 10:00am - 10:30pm

Location: Family Festival at DATC in Kaysville
550 South Main Street
Kaysville, UT

Hello all!! On the 4th of July this year we will be holding a fundraiser for Colton Goes Cochlear!! We will have a booth at the Family Festival in Kaysville on the 4th of July. 10 am to 10:30 pm. We will be selling cookies, suckers, brownies, vinyl-on-wood and vinyl on tile crafts, and jewerly. All proceeds go to the cost of Colton's surgery. Everyone come and check it out!!


Cool Down for the Summer with some Treats

Two businesses in Kaysville are participating in fundraisers for Colton! Mention Colton when you go on the date listed below and part of your purchase will be donated on that day. Please no coupons, stamping or gift certificates; this is for Colton!

Thursday, July 7: YogoTogo(240 N 300 W Kaysville, UT)

Saturday, July 9: Pa's Ice Cream and Candy Company (44 S Main St Ste 4 Kaysville, UT - by Academy Music)

We are so grateful to everyone for putting on these fundraisers for Colton. We appreciate all of your help.