You want to be alright, you gotta walk tall

Our thank you card to all the people who joined the J-Walkers and to the Lowcountry Down Syndrome Society members and volunteers who make the Savannah Buddy Walk the event of the year.

Enjoy…

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What a day!

There are some days that will be forever etched in my memory; days which I can call up from beginning to end that will always bring a huge smile to my face.  My wedding day was one of these.  So were my children’s birthdays.  Lowcountry Down Syndrome Society’s 5th Annual Buddy Walk will undoubtedly be another.

First of all, it was the perfect day weather-wise.  :-)   75 degrees and sunny!  Already I’m pinching myself thinking how blessed we are.  I’m also always so impressed and humbled by the huge volunteer army that comes together for our Buddy Walk.  They are there before dawn, putting up tents, tables, banners and posters, blowing up balloons, working side by side without complaint.  They come, not only from our organization, but from area colleges, high schools, churches and businesses.  A few volunteers take several hours, placing large poster sized pictures of each of our children along the walk route.  This year, we had 75 of these beautiful photos in our collection, including for the first time, pictures of area adults with Down syndrome and other intellectual disabilities who are part of a new program we launched this year called NIGHT OF CHAMPIONS.

Jonathan, Max, Ian...and Jonathan (in 2D)

NIGHT OF CHAMPIONS was a standing room only awards ceremony and dinner that Lowcountry Down Syndrome Society sponsored back in June. It came about because of the tremendous success of our Buddy Walk.  Make no mistake – if there was no Buddy Walk, there would be no NIGHT OF CHAMPIONS.  Because of the incredible generosity of our community, we’ve been able to create this new awareness campaign designed to pave a brighter future for our children.  According to the National Down Syndrome Congress, only twenty percent of adults with Down syndrome are working in the community.  As an organization, we want to improve these statistics.  So back in June, LDSS honored six area adults with Down syndrome and other intellectual disabilities who ARE working in the community – and their employers.  We also honored one talented teen equestrian and his riding stable.

Night of Champion Honorees with Master of Ceremonies Jamie Deen

At precisely 9:45 Saturday morning, this distinguished group gathered again on the steps of the beautiful new band shell in Forsyth Park.  They were our special guests, along with our master of ceremonies, local restaurateur and author Jamie Deen (yes y’all – Paula’s son :-)!)  In fact, one of our NIGHT OF CHAMPIONS recipients, Bill Lester, mentioned to Jamie that his mom shops at the Publix store where he works, but that she often comes into the store “in a mask. “  Jamie said – “That’s no mask – that’s just my mama without her TV hair and makeup.” :-)  ( Boy, as a former news anchor,   I can certainly relate to that! – I, too, often went to the grocery store “disguised” in a baseball hat, sweats and no makeup. :-))

Night of Champions Honorees in front of 3,752 Buddy Walkers

I will never forget the look on our Champions’ faces, as they waited to be called on stage.  Especially Stacy Pierce, from Zaxby’s in Pooler, Georgia.  Her smile was huge and she was literally beaming.  Honestly, it was like she was lit from within.   I couldn’t stop looking at her and smiling myself.  Then there was Jamie Deen’s son, Jack, a preschooler, who joined his Daddy at the microphone.  Jamie’s wife Brooke told me, “Jack wants to be just like his Daddy.”   Brooke and Jamie should be proud of their son and proud of themselves for including him in the Buddy Walk and exposing him to the notion that “we are all different – that’s what makes us the same!”  All of us at Lowcountry Down Syndrome Society hope the Deen’s had fun and that they want to come back year after year.    Jamie (and Jack) did a fantastic job.  So did our Champions, including high school student and star horseback rider Michael Holton and Bill Lester, who both addressed the crowd.

Bill came armed with a pair of huge scissors that his sister, Laura Simpson, lent him, to cut the ribbon to begin the walk. (Laura is director of Special Events for the Savannah Convention and Visitors Bureau – CONNECT SAVANNAH – and a NIGHT OF CHAMPIONS cochair.) When she offered us official ribbon cutting scissors for BUDDY WALK this year, I was expecting a big, fake cardboard pair.  When I saw they were real, I offered to carry them for Bill while he walked up the stairs to the stage to make his remarks, but he was having none of that.  (Nothing against Bill – it’s just the natural mom of young kids reflex in me – “ooh – be careful with those scissors – don’t trip – that’s very dangerous, honey – watch out – be careful!”)  But Bill was a man on a mission.  He was there to make his remarks.  He was there to cut the ribbon.  He was wielding his BIG OL’ SCISSORS – He was in charge!  And he did an excellent job.  Thanks CHAMPIONS and your families for all you do for Lowcountry Down Syndrome Society.  We have been so honored to have met each and every one of you and we are so grateful that you were willing to come to the BUDDY WALK and give back to LDSS.

Bill Lester welcoming the walkers (with the scissors)

The walk starts......NOW!

After the ribbon cutting, the walk began – and what a walk it was!  There were more than 3,500 of us!!!  Can I say that again?  – more than THREE THOUSAND FIVE HUNDRED people – walking side by side, shoulder to shoulder, to celebrate the lives of our loved ones with Down syndrome. I’m so proud of our “sleepy little southern town.”   I remember reading about Lowcountry Down Syndrome Society’s FIRST Buddy Walk after a newspaper google search five years ago, from my desk at work in Wisconsin.  It was during the time I was doing research for our move to Savannah.  I remember being so impressed.  Year ONE – they not only got newspaper coverage – they got more than 1,000 walkers!  Now, four years later – to see it continue to grow like it has – and to be a part of it myself – is truly humbling.

J-Walkers queing up for the walk

Also humbling – the J-WALKERS!!!  GO J-WALKERS, GO!!!   I cannot say enough about our team and the love and support you all show for Jonathan and our entire family.  There were 117 of you!!!  Can I say that again – ONE HUNDRED SEVENTEEN J-WALKERS!!!  For both our first timers and our veterans, thank you, thank you, and thank you!  There were our close friends and neighbors, church friends, Phil’s work colleagues, Jonathan’s and Charlotte’s school chums and school staff members.  There were also a few people we don’t well at all who just wanted to be on Jonathan’s team after hearing about the event –how amazing is that?

(Some of the) J-Walkers post walk

There was also Jessica Kiss, the morning news anchor from WJCL-TV who joined not only Jonathan’s team this year, but Lainey’s Leapers, the team of BUDDY WALK chair John Bogardus and his wife, Candy, who founded the Lowcountry Down Syndrome Society.  Jessica has been a great friend of Lowcountry Down Syndrome Society for a few years now.  She is four months pregnant and glowing. Several weeks ago when John and Candy came into her studio to do a BUDDY WALK interview, she shared with her television audience that  if she were to find out she was carrying a child with Down syndrome, that would be fine with her.  That public proclamation is in itself great Down syndrome awareness and Jessica, I’m personally grateful to you for that.

Jessica Kiss and Jonathan

Then –speaking of grateful, there were the J-WALKERS who traveled from OUT OF TOWN to support our walk!   Nevin Strite is the chairman of the Augusta, Georgia BUDDY WALK.  He and his wife, his three boys and mother-in-law joined us.  Nevin is a huge DEEDAH fan who is doing amazing things in Augusta to get the film in the hands of the medical community.  Nevin, we are so humbled by your creativity, your passion and your help in getting DEEDAH out there.  And we were so honored that you and your beautiful family came to walk with us.

And speaking of honored – we cannot even begin to express how honored we were that the chair of Atlanta’s BUDDY WALK,  Jennifer Thanepohn, and her family came to stay with us – and to walk with us.  Jennifer and Bobby are also huge DEEDAH supporters.  Jennifer and I met at the Downsed conference in Atlanta back in September and instantly hit it off.  So did our children and husbands.  The Atlanta Buddy Walk was six days before our walk, so Jennifer and her crew were ready for a little well deserved R& R and downtime in the hostess city.   (Instead, they walked into the lion’s den of insanity that was my house on Friday evening – see my previous post. :-)) But they rolled with it and made our Buddy Walk even more special.  Jennifer and Bobby, your support and encouragement for everything that’s happening here in Savannah is high praise indeed.  We are in awe of your energy and all you have done for Down syndrome awareness in Atlanta.  We have fallen in love with your family and feel like we have known all of you for years, instead of months.

The Thanepohn's (at the Crab Shack after the walk)

Also, a big thanks to Jonathan’s first grade teacher Becky Kirkonnell, who showed up despite out of town guests and her son’s homecoming game.  And Jonathan’s paraprofessional, Rae Ann Upton, who came after her son’s game was over – and brought him along. Jonathan’s principal, Dr. Ethel Bowles, was also there – cheering on Jonathan, as well as Joshua Tobias and Whitley Divine, who also fielded teams, and who are kindergartners at Jonathan’s school.  Thanks, too , to Dee Harriott, Julie Outz, Seale Navare and Anna Pierce, all staff members at May Howard school who are ALWAYS ready to cheer Jonathan on (and keep him in line :-) ) – in the classroom and beyond.    We appreciate all you do for Jonathan and are so proud to call you J-WALKERS!

Rae Ann Upton, Jonathan and Becky Kirkonnell

Jonathan's principal, Dr. Ethel Bowles

We’re also proud that two friends and church members, Laura Link and Marty Susie, baked two amazing cakes for the BUDDY WALK bake sale.  Your cakes raked in a total of $70!  Thanks for lending your special talents in the kitchen to the cause.  Jamie Deen also showed up with a big ‘ol, big ‘ol pecan pie!

Laura Link's cake with Buddy Walk footprints

We also couldn’t be prouder of the student athletes from Savannah College of Art and Design.  Every year they show up early to help us set up.  The girl’s lacrosse team did an amazing job “tricking out” our pirate ship this year. I was in charge of outfitting the ship and thanks to these great girls, all I had to do was open a few boxes, give a few minimal instructions and they took it from there.  Thanks, too,  Master Jaime Martorell of Ultimate Martial Arts (Jonathan’s karate teacher and fellow Lowcountry Down Syndrome Society parent) for hauling your pirate ship out to Forsyth Park this year.  Thanks, too, for dressing up like a pirate!   -AAARRRGGGHHHHHH!

Jonathan’s karate teacher Master Jaime and his very patient wife Allison

One more word about the SCAD athletes – One of the greatest things about the Savannah walk is that they clap and cheer for our children as they pass them on the walk route.  You guys can’t even know how special and encouraging your chants are to Jonathan and all the other children.  THREE CHEERS TO YOU!!!

Savannah College of Art and Design (SCAD) athletes cheering on walkers

Three cheers as well to all our volunteers who always make the Fall Festival portion of the Walk so amazing.   From church groups, to local high school students, to SCAD professors and art students, your generosity meant that we were able to man 20 kids activity booths this year – face painting, pumpkin painting, craft tables, the pirate booth, princess for a day and kiddie tattoo parlor just to name a few.  I defy anyone to tell me there was something more fun going on for kids that day in Savannah :-).

Fall Festival volunteers

Then there’s Laura Schurman, who until this year, ran the pirate booth along with her husband and family.  This year, they wanted a “break.”  But with the Schurman’s, that doesn’t mean skipping the event.   No, it means taking a break from pirating, and creating something new.  Something exciting, big and new.  Laura, your BOO-TIQUE (all five tents of it) was AMAZING and so are you!!!  Laura and her high school volunteers spent hours turning kids into spooky and scary sprites.  Jonathan couldn’t stop looking himself in the mirror after his monster mohawk makeover :-)."I look awesome!"

Thanks, too, Brett Michaels, the owner of Tradewinds Ice Cream and Coffee (not the Poison front man :-) ).  Brett and his crew came out to the walk for the first time this year, providing walkers and volunteers with free coffee and ice cream all day long! :-)   Jonathan and I are also grateful to Brett almost every Monday.  Jonathan does his homework there most Mondays, while we wait for Charlotte to get out of dance nearby.

Brett Micheals of Tradewinds Ice Cream

Another first for the Savannah Buddy Walk – a Coast Guard flyover!  Our friend and neighbor, Jim Emrich, piloted the chopper that flew over Forsyth as a Coast Guard tribute to the Buddy Walk.  Jim’s new boss, Tim Tobias, is the new Coast Guard Commandant here in Savannah and is the proud father of kindergartner Joshua, who happens to have Down syndrome.  Thanks to Tim and Jim and your crew members for honoring our event in this special and memorable way.

Coast Guard flyover

Also a Buddy Walk first – it was the first Buddy Walk for several of our Lowcountry Down Syndrome Society families, including Jewel Taylor and her children Jai-Lyn, Eric and eleven month old Jasmine.  Jasmine, who has Down syndrome, was eight months old when Jewel first attended one of our meetings.  It was the first time anyone had really congratulated her on the birth of her daughter.  Jewel is also a huge DEEDAH and Jonathan fan.  It has been such a thrill for me to see the impact Jonathan has had on Jewel and her hopes and dreams for Jasmine.  Now her hopes and dreams for her youngest child are very much in line with what they are for her eldest children, as they should be. :-) BTW – BUDDY WALK day was Jewel’s birthday!  Happy Birthday, our dear new friend!

Eric, Jasmine, Jewel and Jai-Lyn Taylor

Finally, I personally can’t say enough about the Lowcountry Down Syndrome Society Board and executive committee.  John and Candy Bogardus, Wendy Fears, Kristin Nyce, Joe Marchese, Ben Spitalnik, Brian Hussey and Kevin Sheehan, I am so honored to know you and your families.   Thanks, too, to ALL our member families who also work so hard to make the BUDDY WALK a success.  We have all been brought together by the precious gift of these children that God has put in our lives.  May we continue to have the strength, the passion and the courage to do the right things for them and to help make the world a better place.

Buddy Walk organizers in blue t-shirts

After this year’s BUDDY WALK, the day that I will continue to look back on and smile about for years to come, I can honestly say, “We’re on the right track!”

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winners

Hi all.  We are working on the epic Buddy Walk post and it occurred to me we hadn’t chosen the winner from the post last week.  So with no further ado…

Congratulations to Elissa Lindsey, and to reward persistence and passion, Veronica Navarro.

Watch for the Buddy Walk post in the next couple days.

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The Buddy Walk Blues – NOT!

Leave it to an elementary school teacher to put it all into perspective with a children’s book.  “It sounds like Alexander and the Terrible, Horrible, No Good, Very Bad Day!” This was Jonathan’s first grade teacher, after I told her about the day I had on Friday – one day before the Buddy Walk.  It was the kind of day that makes you forget everything about what you’re doing and why you’re doing it – and then makes you kick yourself for being such a jerk.  From the moment it was clear the kids were going to miss the school bus, I was in full-on whirling dervish freak out mode, realizing the items on the to do list were too long and that the day –  and my temper  – were way too short.

I actually had high hopes that I would be able to keep it together on Friday, although in hindsight, knowing my anal retentive tendencies, was probably way too much to ask of myself.  I knew that sometime that afternoon, a crew from a local air conditioning vendor was going to pull up to my driveway to install a new a/c unit.  Yes, two days before the Buddy Walk, our a/c went out. (Last year, two days before Buddy Walk, I had to have a ROOT CANAL, so I guess all things considered, I am fortunate that this year, the work was on the house, not on me.  Although last year, I actually quite enjoyed the chance to recline in a chair listening to innocuous elevator music for about an hour.    BTW – you pretty much know you need to do something about the stress level in your life when a root canal is a good excuse to chill. :-))

But back to the a/c situation – Of course the a/c broke down just as we were preparing to welcome out of town guests into our home for the Buddy Walk.  And not just any out of town guests (like my brother from South Carolina who visits all the time – sorry Thad, I’m not saying I take you guys for granted – I’m just saying that you totally know what to expect from me in terms of hospitality on the day before a major event – pretty much NOTHING :-) – and you roll with it – and I love you for that!)  But this year, Thad and his family weren’t coming for the Buddy Walk.  The CHAIR OF THE ATLANTA BUDDY WALK, Jennifer Thanepohn, and her family were.

We had met the Thanepohn’s in person at the Downsed conference in Atlanta back in September and our families instantly hit it off, so when they said they were interested in coming down for OUR Buddy Walk, one week after THEIR Buddy Walk, I unhesitatingly invited them to stay with us.  And if you know me, you would know that this was a pretty uncharacteristic move.  Although I love to entertain, I also know how I can be before a big day that I’m in partly of – or completely in charge of (just ask Thad – or better yet, ask Phil ;-)).  Let’s just say my usual response would be, “Oh – you want to come down for Savannah’s Buddy Walk?  I could suggest a few convenient hotels.” :-)  “Why would that be?” you might ask.    “Oh – I don’t know – just something about the fact that my head will probably be spinning around and green stuff will be coming out of my mouth ala the Exorcist at right about the same time you’re planning to arrive in Savannah!  ;-)”) However, I had opened my mouth back in September (before any sign of green discharge had begun to build up) and had uncharacteristically extended the hand of hospitality.

So now it was just hours before their arrival and my house was filthy.   (OMG –where did all this dust come from – and these cobwebs – should I try to pass it off as Halloween décor?  ;-))  Six loads of laundry I had done two days before still needed to be sorted and put away, the bonus room where I was planning to put the parents was trashed since it normally serves as the children’s play room and not a guest room, toilets needed to be scrubbed, kitchen and bathroom floors needed to be washed, beds needed to be made and my office and the kid’s rooms still needed to be picked up so our guest’s children could have a nice place to sleep versus dirty underwear piles.   I still had to finish the opening remarks for our Master of Ceremonies, Jamie Deen,  and wrap up the entire opening program with our Buddy Walk chairman; coordinate the timing of a Coast Guard helicopter flyover; make numerous calls and emails coordinating Jonathan’s team, the J-WALKERS; make calls and emails regarding our news coverage and make calls and emails to our special opening ceremony guests. Oh yeah, I still had to buy face paint, brushes, glue, googly eyes, craft wire, washable markers, mums, scarecrows, sanitary hand wipes and numerous other items for the fall festival portion of our Buddy Walk.  And then, I also had to go to Wal-Mart to buy poster board and print off a dozen new pictures for Jonathan’s 2010 Buddy Walk Wall of Fame poster.

And it was at Wal-Mart that things started to unravel.  Actually, it was three days before when things REALLY began to unravel. I was on an excellent pace for BUDDY WALK before then.   But early in the week, Charlotte became sick with a sinus infection and had to stay home from school for a few days. Then on Thursday, I was stuck at home for most of the day waiting for the a/c tech to come to my house to assess the damage.  That’s why I was finally out and about on Friday – one day before the walk – doing all the things I had planned to do over the course of a week, in one day.  So here I am at Wal-Mart and the photo project that should take five minutes is taking an hour after an equipment malfunction.  (And let’s just say that although the person at Wal-Mart who was trying very patiently to try to retrieve my order from the broken machine, was nice and polite, her middle name was not exactly Hewlett- Packard.)  When it became clear she was not going to be able to fix it herself, and that someone at Hewlett-Packard probably was, we moved onto another machine.  By this time, the a/c guys are calling, wondering where in the heck I was.  (I suppose I should have enjoyed that call – I can’t ever remember a service truck crew waiting for ME – how many times have I waited for THEM?)  Anyway, I pull out of Wal-Mart, get home just shy of 2:00, show the a/c guys to the attic and start my Buddy Walk calls and emails.

They take much longer than I can possibly imagine.  At 4:00 I walk down to the bus stop to pick up Jonathan.  The house (which should have been Leave it to Beaverville hours ago) has still not been touched. I still have calls and emails to make.  I tell Jonathan he can play Wii or play outside with his friends until I finish my work and then he has to go upstairs to clean his room.  I wrap up, yell outside for Jonathan and he refuses to come in.  I practically go nuclear.   He comes in only after I come out, to physically retrieve him.  He huffs his way upstairs and TOGETHER we quickly pick up his room. At this point, I’m just looking to clear some floor surface for a child’s sleeping bag, not for any MOTHER OF THE YEAR bonus points.   I then unload the dishwasher, put away the dishes from breakfast, wipe down the kitchen countertops and table, scrub the downstairs toilet and rinse the sink and start making the bed in the bonus room – realizing now that I can kiss any thoughts of anything remotely resembling HOUSE BEAUTIFUL away.  I’m now hoping the guests will arrive just as it turns dark so they won’t be able to see the dust. :-)   But I’m also starting to feel better,  telling myself – these folks are easy – it’s always me that’s so hard (on myself.)   I know the Buddy Walk is the top priority and by now, almost all my Buddy Walk stuff is done.  I also know that if anyone is going to understand what I’m going through – it’s the chair of another BUDDY WALK.

By this time its 6:00 and they call to say they’ll be here in 50 minutes.  I stink, still haven’t showered and realize that although I’ve made their beds, the guestroom pillows are up in the attic where the a/c guys are working.  I’m thinking – no problem.  50 minutes to go.   I’ll take a quick shower, head up to the attic to get the pillows. Everything else is done.  We’ll order pizza.  The kids and I can make our BUDDY WALK posters tonight, we’ll be able to visit and catch up, and I’ll stop sweating the house and start enjoying their visit.  “Get over yourself, girl! :-)”  BUT HERE’S WHEN IT GETS REALLY FUN!

The a/c guys take a break and I slip into the attic to get the pillows.  Let’s just say that your attic in Savannah in the summer is not where you want to be (thus the rush to get the new a/c unit in the house.)  It is blistering hot up there.  In fact, I haven’t been up there since July, when our last out of town guests arrived.  I went up there for just a few minutes to grab their pillows and to put them back when they left.  Problem is, when they left it was so hot up there that I shoved the pillows into a few hefty bags and just threw them up there – anywhere.  I couldn’t get out of there fast enough – it was that hot.  So here I am on Friday, rummaging around for the hefty bags filled with pillows, wearing my big old clunky MBT fitness shoes which kind of look (and feel) like I’m wearing a big white anvil on my foot.  (These are not ballet slippers.) So I straddle two beams in my big ol’ MBT’s – oh thank Goodness – I see the bag of pillows!  And then it happens.  As I reach for the bag, my right foot slips off a beam – and the floor beneath me gives way!  I fall on my butt onto the beam where my left foot is, imagining what it must be like to be an Olympic gymnast who just blew her big beam routine.  I catch my breath and after I stop swearing I almost start giggling because I can’t believe what just happened and what I’m seeing beneath me right now – (HOLY MOLY!!!) – Charlotte’s green shag rug.  Yes, I crashed through the insulation and the drywall through the ceiling in Charlotte’s room!  I rush downstairs to assess the damage and kind of shake my head thinking how lucky (but how stupid)  I am, call Phil (who’s picking up Charlotte from dance) to give him a heads up on what to expect when he gets home, get the mini shop vac to clean up the fallen plaster and head into the shower.  By this time, it’s 6:20.  They’ll be here in a half an hour. (Oh yeah, I put the pillows in pillowcases and place them on the guestroom bed.)

Mommy broke that one.

Phil comes home, takes a look at Charlotte’s room, and shakes his head ala Ricky from the I LOVE LUCY show – (“Lucy – what did you do all day???!!!” – looks like you and Ethel got involved in another episode of CRAZY HIGHJINKS!!!”)  Phil,  probably knowing it’s best not to mess with me right now, calmly agrees to wipe down the tub in the kid’s bathroom which the guests will be using,  while I get ready –  and I’m now feeling much calmer as well.  Ten minutes to go – okay so I don’t have time to blow dry my hair before the guests arrive and when they get here it’ll still be wet,  but who cares?  We’re chilling at home tonight and these are awesome, low maintenance, easy going people.  BUT WAIT, THERE’S MORE!

Ten minutes to go and I decide to light a pumpkin scented glass potted Yankee candle that someone gave me for my birthday.  It has been sitting on the kitchen counter top waiting to welcome in fall ever since then.  I pick it up, it slips out of my hands, and CRASH!  It shatters all over the kitchen floor and I cut my left thumb.  YES, THE HITS JUST KEEP ON COMING!  Phil brings down the shop vac and scolds me for my bad language. (Yes, I have to admit, it was not pretty :-))  I yell to him to let me take care of it, simultaneously vacuuming and wiping the blood from my thumb.  After the glass is gone, I head upstairs to get a band aid.  Then I hear, “HELLO!”  The Thanepohn’s have arrived.  The a/c guys are still there.  Debris is strewn all over the front lawn and the driveway.  The front door is wide open since they have been going in and out all day.

But none of that matters.  The kids instantly reconnect and head upstairs.  The husbands also reconnect and head off to pick up pizza.  Jennifer and I reconnect and five minutes into our chat, she stops talking, looks at me and says, “What’s that on your arm?”  “Oh, that’s just a burn I got while cooking dinner with the kids on Wednesday.”  “Brooke – that’s a THIRD DEGREE BURN!  You need to treat that.”   (CAN I JUST GO UPSTAIRS AND PULL THE COVERS OVER MY HEAD AND PRETEND THIS DAY DIDN’T HAPPEN NOW?)  We laugh about how we’re too busy to take care of ourselves.  She points to an old ankle injury of hers as a perfect example. She tells me to dig up some Neosporin.  I head back upstairs.  She heads to her car to retrieve her first aid kit.  (She’s a former paramedic and comes fully equipped with everything needed to fix me up in no time.)

The a/c guys finally leave.  Our guys come home with pizza.   We all sit down to eat.  We laugh, we talk.  Then we make BUDDY WALK posters and I’m starting to relax. The kids are in the kitchen creating their own personal tributes to Jonathan and his team, the J-WALKERS.   I sit down in the living room with the adults to make my poster.   It’s something I had planned to do early in the week – something that “had to be done before the guests arrive.”   But now they’re here and I’m forgetting all the crazy stuff I do and say and worry about that doesn’t really matter – completely focused on making the poster and completely focused on what the BUDDY WALK is all about – honoring Jonathan and his fellow extra chromosome brethren.   For the most part, it had been a terrible, horrible, no good, very bad day.  But the clock was winding down and so was I.  And I awoke the next morning to one of the best days ever. :-)

2010 pictures for the Jonathan poster

DETAILS ON THE BEST SAVANNAH BUDDY WALK EVER TO FOLLOW!

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Why I walk

Tomorrow is Savannah’s Buddy Walk.  We have frequently bragged about our local group, the Lowcountry Down Syndrome Society, and the terrific job they do with awareness in the Savannah area.  I am amazed that after only 5 years, they attract 3,000+  (will it be 4,000 this year?) to the Buddy Walk.  It really is something to see.

Brooke did a count last night and we have 97 people signed up for the J-Walkers.  I suspect it is actually higher than that.

WOW!

As Jonathan grew up, I always wondered how he would be received by others.  Would friends drift away because it was too uncomfortable to be around a child with special needs?  (How ignorant I was!)  What I have learned is that to know Jonathan is to love him.  He simply charms everyone he meets and makes friends where ever he goes.  Our headcount at the walk is but one data point.

But it’s not just Jonathan.  Nearly all the children–and adults–with Down syndrome I meet have a wonderful view on life, have a wicked sense of humor, and want what we all want: to be respected, to be happy, to work, to impact the world in a positive way.  They are a joy to know.

I read this editorial last night and it captures so eloquently why parents feel so strongly about the use of the R-word.  Every time it is heard it reminds us that our children are in a category that is not respected and valued.  Its unchallenged use allows society to continue to demean people who need our help, but instead are ridiculed.

I imagine that if any one of the 97 J-Walkers heard someone with intellectual disability referred to a re**rd, they would gently grab their arm and say, “That’s not right.  Please don’t use that word.  These children of God deserve our love and help, not our ridicule.”

So this is why I walk.  Because once you know Jonathan or any other child with Down syndrome, you can’t help but become an advocate.

Thank you to all you J-Walkers, and to everyone else who walks.

Leave a comment.  We’ll give away another Deedah to a random commenter.  If you can’t think of what to say, leave the name of the Buddy Walk team you joined, or leave the name of your home town.

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Wordless Wednesday…and Buddy Walk plug

Jonathan making friends

Jamie Dean at the filming of the Buddy Walk Promo

Jamie Dean at the filming of the Buddy Walk Promo

The Savannah Buddy Walk is this Saturday.  Sign up for the J-Walkers here (up to 8:00 PM on Thursday), or at Forsyth Park starting at 8AM on Saturday morning.  J-Walkers meet at 9:50AM just left of the stage.  Look for the J-Walkers sign.

See you there!

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now and the future

“Jonathan, what do you want to be when you grow up?”

“A policeman.  with a dog.”

“Oh cool.  Like a German Shepard?”

“No. with a puppy.”

***

Every couple weeks, I ask the kids what they want to be when they grow up.  It’s a great exercise to sample what the kids are observing about the world around them.  Lately, Charlotte’s most common answer is “art teacher.”

The innocent and limitless view of the world is wonderful.

***

Yesterday, a good friend and I were talking about our kids and where we thought they would end up.  He asked me “what are your expectations for Jonathan as far as education?”    I responded that we expected him to go to college.

When I observe Jonathan, I have no doubt he will do it.  He is doing very well in 1st grade, is developing good habits with homework and genuinely takes pride when he does well on tests.  (In his first marking period report card, he received two perfect scores and in no subject did he receive a score lower than a 76%.  Yes, I am one of those dad’s who brags about how great his kids are!)

How fortuitous that I should wake up this morning and while scanning my favorite blogs, come across this post about this very subject.

This would not even be dreamed about a few short years ago.  The expectations, along with wonderful teaching aids, are helping our kids reach their full potential.  Karen Strite is compiling a nice list of aids on her blogHere, Here, and here.  Keep up the great work, Karen.

***

I love the idea of Jonathan ending up with a story like Tim’s.  Look at this inspirational story of a wonderful person who has put together a successful career.

***

Deedah was shown last Thursday night at our PTA meeting.  There were about 100 parents, teachers and children in attendance and the film was very well received.  We were fortunate to have Sharon Sand, the school district Senior Director of Curriculum and Instruction in attendance.  She has expressed interest in getting the film into schools throughout the district.  In addition, our local school board member (and good friend,) Greg Sapp, was there and wishes to show the film to the school board.

Thanks to the PTA board for hosting and allowing us to show the DVD.

We have wonderful fans who are getting Deedah shown all over the place.  We love to hear about where it is being shown.  If you have an event, we would be happy to promote it anyway we can.  Thanks for your continued support.

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Wordless Wednesday

Thank you Stayce Koegler for the beautiful pictures.

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How does this story end?!

Last Wednesday was not a good day.  The first three days of each month are exceptionally crazy. We have to close the books at work; early mornings, late nights, lots of stress.  I was already worn out when I picked up Jonathan from karate and Charlotte from dance 7:00 PM on my way home from work.  As soon as both kids were in the car, they started bickering.  This time, the source of conflict was a single magazine in the back seat, and whose side it was on.  Back and forth it flew.

A few loud, sharp words from me and it stopped.  And I immediately felt like crap for loosing my cool, and was very frustrated with the kids.  I want bliss and happiness when I am around the them and when we all sit silent and mad at each other, it feels like a wasted moment we will never get back.

We headed straight home for dinner (Brooke, thank you for having it done and ready to serve.)  My annoyance continued as we didn’t sit down for dinner until 7:30.  I ate dinner quickly, cleaned up the kitchen, and escaped to my chair to chill out.

Charlotte joined me to work on homework, and being very tired and grumpy, was not bringing her A-game.  So she was peppering me with questions that she could easily answer an hour earlier.  It was after 8:00 PM–normal bedtime–before Jonathan finished his dinner.

Jonathan then came over for his nightly lobby for a fudge bar, a treat which requires “eating a good dinner.”  He started talking in great detail with wild hand gestures about how he had eaten all of his rice and peas by spreading them around, then pushing them toward the close side of his plate–Charlotte: “Daddy, this sentence doesn’t make any sense.”–“hold on Charlotte, Jonathan’s talking”–then ate six bites and finished almost all–“Daddy, what does qualify mean?”–“Charlotte..”–and the gravy…blah, blah.. Finally, I blurted out in frustration, and angry with myself before I even finished talking:

“JONATHAN! HOW DOES THIS STORY END?!”

Jonathan paused for just a moment, then said, “with a period.”

Charlotte and I burst out laughing, and Jonathan, never one to miss a good laugh, immediately joined in.

Evening salvaged.

Later, I relayed the story to Brooke.  She said, “That’s my boy.  He’s been working on sentence construction at school and homework.  ‘Jonathan, don’t forget the period.’ ”

***

You can still post a comment for your chance to win a Deedah DVD on Brooke’s Buddy Walk in NYC post.  As of Saturday AM, you have a VERY good chance of winning.  …and check it out, we had a Rock Star show up and post a comment!

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Down with NYC

Sometimes in life, I just pinch myself, as I stumble upon something so serendipitous, so in the right place at the right time Forrest Gump-esque, that I just can’t believe I’m there.  Such was the case two Saturday mornings ago, when this Savannah girl found herself all alone with her camera in Times Square.  I had flown into New York City the afternoon before with one of my BFF’s to celebrate my birthday. (Yes – I am still milking the BIG 5-0 almost one month later :-))

Times Square

The day before we left for New York I was checking the National Down Syndrome Society website for something unrelated and found out that the New York City Buddy Walk was that weekend!  The website also invited folks out to Times Square before the Buddy Walk to view the annual NDSS video featuring amazing pictures of children and adults with Down syndrome. So while my BFF slept in, I hoofed it to Times Square for the 10:15 unveiling of this year’s video. Every year, a few thousand pictures are submitted, but only two hundred are chosen.  Imagine the thrill of the families who gathered to watch their child on one of the biggest screens in one of the most famous corners of the world!  They came from all around the country, this group of parents and children brought together by excitement, pride and an extra chromosome.  When the video started rolling, a rolling wave of applause and laughter began, as each family looked up to see their star.  The video is not only a visual love letter to children and adults with Down syndrome, but also a gentle reminder to society at large that people with Down syndrome are unique individuals.  The diversity of the pictures was inspiring.  Young, old, black, white, students, workers, friends, athletes, musicians, beloved family members.   As I looked up on the screen, I thought, “Jonathan – I love your peeps!”   You can check out this year’s NDSS video at www.ndss.org.

Show time

Waiting for the video

***

From Times Square, a few hundred of us boarded awaiting buses to head up to Central Park for the NYC Buddy Walk.  (Thank you, Becky Switalski of NDSS for getting me on the bus.  Becky is the NDSS National Buddy Walk Director and has been a huge help in getting our Buddy Walk off the ground in Savannah. )

My BFF met me at the park and we both started clicking our cameras, taking it all in.   As someone who has been involved in two different local Buddy Walks for the past seven years, it was great to be in the Big Apple, where it all began in 1996.  The opening ceremony was inspiring, with an amazing young dancer with Down syndrome kicking things off and pro snow boarder Kevin Pearce and his brother David addressing the crowd.  You may remember Pearce’s story from the Olympics.  Pearce, one of the United States’ greatest snowboarding hopefuls, was unable to compete because of a severe head injury suffered before the Olympics.  He says his younger brother, David, who has Down syndrome, has been instrumental in his recovery.

  • The Buddy Walk warm-up
  • David Pearce holding banner on right side with snowboarder brother Kevin (left)
  • Kevin and David Pearce
  • Actor/musician and NDSS board member Chris Burke was also there, introducing a high school girl who is an NDSS ambassador this year.  She delivered a great speech.

  • Chris Burke with Buddy Walk ambassador
  • My BFF snapped a picture of Burke and me along the walk route.  Chris said he remembered meeting me at the National Down Syndrome Congress in Orlando in July and that he enjoyed “Deedah” very much.  Thanks, Chris!

  • Chris Burke and Brooke
  • Check out the team banner made of Buddy Walk t-shirts

    Cool shirts

    cutie pie

    I was also happy to meet Pam Sandonato from NDSS, who has also been very helpful to the folks in Savannah who started the Lowcountry Down Syndrome Society’s Buddy Walk five years ago.   A lot of time, energy and passion has gone into the country’s now 275 :-)! Buddy Walks.  As a mom, I’ll always be grateful for the folks in NYC who got it going.

    Brooke and Pam Sandonato

    And as a birthday girl, I’ll always be grateful that the one weekend we chose for our Big Apple girlfriends getaway, was THIS weekend – the weekend set aside each year to celebrate and honor our loved ones with Down syndrome.  TALK ABOUT ICING ON THE CAKE! :-)

    Linda, Brooke and Roselle (Thanks BFF's!)

    Icing

    And what’s icing without a present.  Leave a comment and we’ll choose one at random and send a Deedah DVD.  Sappy, witty, kind or just say hi; we want to hear from you.

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