This morning I received a call from the Executive Director of ASPIRO. He asked me if I would consider being a member of the Board of Directors! I feel so honored to serve my community in this way. I encourage you all again....be involved!! It is a wonderful way to influence people in such a positive way!! Your input and enthusiasm means so much to so many!!

Giving Back

The organization that offers therapy and services to my son is called ASPIRO. They are really awesome. They have been our biggest cheerleaders and an incredible source of advice, assistance and education. ASPIRO organizes our local Buddy Walk and other events throughout the year. Their annual fundraiser this year had the theme; Jewels, Jeans and Jazz. It was held at the Oneida Country Club on October 16th.

I joined the planning committee this year because I wanted to give back to the people and organization that has helped my family so much these past two years. I was new to the committee, but was available to do whatever they wanted me to do. Through the course of events, meetings and so forth, I ended up being voted in as the spokesperson for the evening. I was to give a speech about my son. I may sing every week in front of hundreds of people, but speaking is a different ball game! I'm not nearly as comfortable. This evolved into me giving the coordinator photos of Nate by himself and with our family.

As I approached the podium and began my presentation, the slideshow of Nate's little life flashed behind me. I read to them my essay "Welcome to the Magic Kingdom". You could have heard a pin drop. After my speech was done, the host invited James up to the podium, and he had a special guest with him...Natie! After hearing all about him and seeing him on the big screen, everyone cheered when they saw his beaming face! The event host then said, "the cost of offering therapy and assistance to Nate is approximately $6,000 per year, and ASPIRO currently has 86 children in their program. So, that being said, who will donate $5,000 for the efforts of ASPIRO in this community?"

Our committee had never done anything like this before.

We had hoped to raise $5,000 total in this portion of the event.

In 10 minutes, the wonderful people of Green Bay donated $20,000 to ASPIRO!

After all was said and done, including the silent auction and raffle tickets, our fundraising efforts raised $46,000.

This was up 15% from last year.

It was hard to make it to the meetings, because I work full time.

It was uncomfortable being asked to speak.

It was emotional because I'm talking about Nathan, who is my heart...and each time I went over my speech I wept.

I didn't want to cry in front of hundreds of people. (I didn't).

I was just willing, and even though very inconvenient and uncomfortable....would never hesitate to do it again.

It was so worth the effort.

Nathan is so worth it.

I encourage you to take part in your local community efforts because your life will be touched in a whole new way!

Happy Birthday Natie-boy!

You are loved beyond measure.

You are adored by all who know you.

You are the end of the rainbow, my little boy.

Happy Birthday!

Plans to prosper you.....

The original Hebrew word in this passage is "shalom".

The NIV is the only translation that reads,"prosper".

Although prosperity is a derivative of the word shalom, it's fairly down on the list. In this particular scripture "peace" is the translated context.

Do I hope that God's plans for me, for my husband, for Nate and my family include prosperity?

Sure.

Why not.

But my true joy is found in the peace that God has planned for me and the ones I love.

I desire peace for Nate more than prosperity, more than anything except his salvation.

Glory Baby

There are many times when I am with my family that I feel like I'm missing someone. Quite often, in these moments I will actually do a quick head count...and even after everyone is accounted for, I still have an emptiness in the deepest part of my heart. I lost a pregnancy in May 2006. I believe in the wisdom and council of my pastor, and don't believe I lost the child. I look forward to seeing our little glory baby one day in heaven. Have you ever miscarried? Do you ever have that feeling that someone in your family is missing? You are in heaven, little baby Kocian. But you are missed here, in our home...with your brothers and sisters. We miss you everyday, we miss you in every way, but we know there's a day when we will hold you... we will hold you. And you'll kiss our tears away, when we're home to stay, can't wait for the day, when we will see you... we will see you. So baby, let sweet Jesus hold you, 'til mom and dad can hold you.... you'll just have heaven before we do. (from "Glory Baby" -Watermark)

Nice way to get a tan!

wordless wednesday

Queen for the day

That's how it's done in these here parts...

(So far...cookies and cream fudge for breakfast)

Happy 12th Hannah!

Busy Days

Andrew starts high school...omg

Hannah heads out the door for her first day of 6th grade!

Maddie on her way to 3rd grade

Nate checks in with Elmo...

Hey wait! Where did our summer go?

like father....

...like son.

Much to our surprise and delight, Nate crawled to the piano bench, pulled himself up to a stand and starting playing us a song!

cheap thrills

Wordless Wednesday

my first attempt at sushi!

Yum!

My friends Becky and Tim came over tonight, and we made tuna and crab sushi. We all love it so much, but none of us had ever made it before. It was surprisingly easy to make, and totally delish. James looked on with a mixture of disbelief/disgust at the fact that we were scarfing down raw fish-but it really was good! Any sushi lovers out there?

Welcome to Holland?? I don't think so....

I mean no disrespect to Ms. Kingsley, and at the risk of ticking off lots of my friends who read my blog, I'm afraid I must emphatically disagree with "Welcome to Holland."

Don't get me wrong....I mean, I understand the essay.  I get the concept that you plan on one thing and end up with another, but it's phrases like "slower-paced" and "less-flashy"that make me shake my head... so I'm going to get it off my chest once and for all.  And let me start with...

I will never agree with the statement... (that for the rest of my life) I was "supposed to be somewhere else" and that "the pain of that will never, ever, ever ever go away" or that (my son's life with a disability) is somehow perceived as a "very very significant loss of a dream."

HuH?!?

Even if Emily feels this way, wouldn't one "ever" be enough? (never ever ever ever ever ever ever ever ever )

And for her, I guess her dreams for her child were extremely grand, because the loss of them wasn't just a loss, it was a very very significant loss.

Is this redundancy and emphasis necessary?

Nobody that I know brags about being in "Italy" and how "wonderful it is there" while I am stuck in Holland looking at the windmills.  

A change in flight plan? Yes. But there I must stay? um....okay....but I must? or....I get to! 

Alright so I've picked it apart enough.

I've read the essay a hundred times and I've never agreed with it.

I get it, but I don't agree with it.

Maybe I'm the only one.

Maybe not?

So in case I'm not alone, I will suggest a different destination...one that I feel better defines my personal experience with being a mom to a child with a disability. 

Here goes....

People never ask me what it's like having a kid with Ds, but if they did, I would say-

Welcome to the Magic Kingdom

If you've ever planned a trip to the Magic Kingdom, you know by reading about it and hearing other people's stories that you are going to a place like no other. This is a place where imagination and fantasy are a reality at every turn.  You are told that once you enter the gate the magic begins, and that feeling of elation and joy remain with you as long as you are there.  

You can hear about it and read about it and anticipate it all day long, and you think you're prepared for it because you've done so much work planning your trip.  But the moment you walk down Main Street USA for the first time for yourself, you realize you had no idea how incredible this place really was.  There are no words to describe it, because there is no other place on earth like it. There is not one detail left undone; not one stone out of place; not one person out of uniform; not one chip in the paint, or piece of gum on the ground.  It's more than you had imagined, because the colors and sights and sounds are beyond anything you could have dreamed up yourself.

But your realize there's more for you to do here.

You thought you were here to just enjoy the park, but you realize there is work for you to do, and while you are delighted at each and every turn, you discover....

Liberty Square-and you stand a bit taller and walk a bit more proud knowing this place allows you freedoms and choices you didn't know were available.  And if you find that there is a restriction that you don't agree with, you now know there is a place like Liberty Square, where you are allowed to make that freedom a reality for you.  Your confidence in this takes you onward to...

Fantasyland-where you get on a little boat and travel the world, only to realize it is a very small world indeed, and that there are hundreds of thousands of people just like you!  You spend the next part of your day humming that little tune....as you take the Skyway to 

Tomorrowland-where you spend time dreaming of the future and all the possibilities and potentials that you learned about and demanded at Liberty Square.  

And while you're there experiencing the most incredible joys of your life, you realize something else about yourself....a mother bear inside. You've been at the park long enough now and it was bound to happen...you felt that tinge of discrimination and injustice. You didn't know that hearing the "r" word was going to offend and hurt so much.  You want to start a campaign to end it!  And off you go to Frontierland-the place where you can pave the way where no path exists; tearing down trees and prickly bushes all the while loudly proclaiming your defense and allegiance, your pride and adoration.  You boldly go where no one has yet gone before you, and you marvel that your efforts can make the world a better place not just for yourself and the ones you love, but for others that are at the park with you, and those that will visit after you.

It's Adventureland at its finest. 

 

Like my friend Tim said when he read the essay....we've come a long way in our thinking, our language, information and knowledge since 1987.

Raising my child with a disability is like discovering freedoms, dreams, adventures, hopes and opportunities that I didn't know even existed.   And I can't get on the bandwagon fast enough. I can't buy up enough travel guides and maps and I devour each and every one. I go online and share with my new friends who have also been to the Magic Kingdom. I can't talk about my son enough and if I could get away with it, he would be the topic of every conversation. I am happy. Encouraged. Delighted. Never alone. I have experienced depths of love deeper than what anyone ever told me I would. I never want to leave this place.

I am not supposed to be anywhere else on earth.

I have not experienced a loss of any kind.

Nathanael James is a GIFT. 

"Jill, that was our CREAM SODA!"

That is what I heard in the middle of the night from my friend Becky, after hearing the raccoon scramble through our campsite.

Here's how it went down:

Becky and her husband Tim went camping with us in Door County over Father's Day weekend. (FUN!)

Their pop-up was parked next to our tent.

Earlier in the evening, I spied Jones' Cream Soda at the store, and Becky grabbed a 6-pack and we couldn't wait to stick it in the cooler! (YUM.)

We stayed up late. James heard rustling in the trees so he shined the flashlight zing! to his far left! in a flash!  and there he was....a stinking raccoon...just 2 or 3 feet from us...waiting for a snack! So we put all the food away in the truck, put the coolers under the pop-up...and my last thought of the night was..."I wonder if the raccoon can open up the cooler?  Will he grab our hamburgers?"

At about 1:00 AM we hear more rustling, louder than before. At first I think it's one of the kids getting up, but no...  then I hear laughing from the pop-up, and we start laughing, and James gets up, (unzip the sleeping bag, unzip the tent, zip the tent..) and shoos the 'coon away again!

Back in the tent, unzip the door, zip the door, zip the sleeping bag...whew! Finally, some peace.

But now this bugger comes back a third time, and this time with a vengeance! A few thumps, clunks, dragging....and I know for sure now that a raccoon can open a cooler....and then the giggling again, and then Becky half-whispers, half-yells, "Jill! that was our CREAM SODA!"

brotherly love, too

My friend Monica posted a really cute picture of her two sons hanging out together, and I couldn't resist copying her with one of my own....don't we just love our boys? I was going to save this one for Wordless Wednesday, but Monica's cute pics inspired me tonight :) (Andrew will be off to bible camp next week....and we'll all miss him too!)

Wordless wednesday

Honest Scrap

Thank you so much to my blogging friend Ria, who has so graciously awarded me with the Honest Scrap.  

Accepting this award, requires that I do the following: 1) Say thanks and give a link to the presenter of the award. 2) Share "ten honest things" about myself. 3) Present this award to 7 others whose blogs I find brilliant in content and/or design, or those who have encouraged me. 4) Tell those 7 people that they've been awarded HONEST SCRAP and inform them of these guidelines in receiving it.

Ten honest things about myself:

1. I am over-the-moon crazy about my son Nate, who has Ds, and I WOULD NOT change who he is for anything in the world.
2. I am unashamed of the Gospel of Jesus Christ.  
3. I like to redecorate my house, and will do so into the wee hours of the morning.
4. I love to read, and can spend hours and hours engrossed in a novel.
5. I am sensitive and get my feelings hurt easily.
6. I don't wash my hair everyday.  
7. I eat the wrong things late at night (esp if I stay up redecorating....or reading)
8.  I would rather go to a thrift store than the mall.
9. I used to work at Disney World when I lived in Orlando and no, I don't miss it, and no, I don't want to move back and no I haven't lost my mind.
10. I drink entirely too much coffee.

Alright then....I hereby bestow this award to....

James:  www.ipumpin.blogspot.com

Pastor Jerry: www.upnorthwisdom.blogspot.com

Tony: www.tonypiantine.blogspot.com

Becky: get a blog, girlfriend... :) (this could be your reason why!)

Vanessa: www.sacrificeofpraise08.blogspot.com

Jennifer: www.thebankscottage.blogspot.com

Monica: www.monicacrumley.blogspot.com (she gave me my very first blog award! See Monica's link next to my lemonade award!)

Wow it's too hard to pick only 7.....!

(can I send one back to you, Ria?)

Mom...er...NATHAN'S new toy

I  can't wait to put Natie on here every day for his PT! He was on a treadmill a few times at Deanna's house and did really well.  I have a fitness center at the clubhouse where I work, and I told James we could bring Nate there a few times a week too. But now....oh yeah....we got some walkin' to do!

wordless wednesday