Mark's Starlight Wish Trip - Nov 2008

Wow. It made me cry, too. I so remember how it feels not to hold your baby, only to hold his hand or touch his arm. Just gut-wrenching, but then so sweet when he is finally in your arms. You've made me remember some things in my past, too (I don't even think I wrote about it in my TR). What strong, healthy boys you have now, though! You have all truly been through fire. I love the way you look at life, Alison.

And congrats on getting to be part of the BigGive!!! Those Disboutiquers are miraculous with fabric and pixie dust!
 
This is such a touching story! I am extremely honored that you have welcomed us disboutiquers to add some pixie dust to your trip!

Both the boys were so darn little and cute! What precious pictures!
 
Dear Wonderful DISBoutiquers (and other Wish Trippers who are also reading - don't stop, this tells you more about the background to our Wish):

I have also asked Jessica to post this on your site/thread because I have learned from other Big Gives stories that checking out your site is akin to searching through your mother's clothes closet in the weeks leading up to Christmas.

I just wanted to send you all a message to say thank you for taking us on. Throughout this Wish experience, my husband and I have struggled with accepting the unconditional support from our Wish Granting organization, our Wish Granter Shelli, and now your wonderful group. We know that life presents many challenges for our son Mark, and he faces those challenges with such grace, courage and dignity, yet it's all just part of embracing the day to him. He's taught us so much about life.

My husband and I are tremendously proud of Mark, and Douglas too. As a twin sibling of a boy with a signficant physical disability, he makes many sacrifices too. He's had to accept less of my time, had to wait while Mark catches up, had to accept that our family just can't do all the things that other families do. He watches while others shower Mark with attention, and struggles with feeling a little bit jealous of that...then struggles with feeling guilty about those emotions too. How we hope that he'll see on this Wish Trip that there are wonderful people out there who want to show him that he is very special too.

Hopefully some of you have had a chance to check out our pre-trip report (http://www.disboards.com/showthread.php?p=27462017#post27462017), and you will have learned that our Wish child Mark and his twin brother Douglas were born over 3 months early. They have both struggled with medical issues, but it is Mark who bears more acutely the legacy of their prematurity. Mark has cerebral palsy. He cannot stand independently but uses a walker very proficiently for getting around. A number of medical issues plagues his early days, including reflux so severe that he had surgery to correct it, and a feeding was placed to supplement his nutrition. We still use it at night-time, and I have time for trolling the DIS while waiting the 2 1/2 hours while it runs (sometimes I am smart enough to doze!).

Many Wish families I have encountered through the DIS boards have been devastated by heartbreaking diagnoses for their children. How wonderful that so many of these stories have taken a happy turn, and we pray that these children - and all the Wish children - enjoy long, healthy lives.

For us, our journey leading up to this Wish Trip began almost 10 years ago. Living with medical issues and disability is just what we do. And so, it is so "normal" to us, that we are so touched by your embracing us by inviting us to be part of your Big Give.

We're not an easy family. First, we're from that frozen tundra north of you all...we send you those cold winter winds, hockey, and some pretty fine musicians and comedic actors. Well, there's a lot more, but you get the point. I know that shipping to us is as a hassle, and we so appreciate you seeing past that. Second, we've got boys who are starting to struggle with the fine line between "cool" and "precious". How did they get to be this old so soon?!? Third, our boys are teeny, especially Mark. In fact, right now Douglas has no long pants other than sweats because I haven't faced the challenge of shopping with him! Tomorrow we go to Old Navy and Gap in search of more adjustable elastic pants!

I mentioned that Peter and I initially struggled with accepting a Wish. It all started one day 2 years ago when I called Starlight Starbright Canada. I had some accessibility/child with disability at WDW questions that I hadn't found info on. We were planning our first trip to WDW. I was clear that I wasn't enquiring about a Wish for Mark, just requested their expertise. The Starlight contact insisted on learning more about Mark, told me that he definitely qualified for a wish, and then assured me that accepting a wish wasn't so much about accepting a financial gift, it was about giving your Wish child - and siblings, and parents too - an opportunity to create memories together. A time to take back some moments of childhood that had been lost.

And still, we struggled. We are fortunate to be able to save and plan for vacations - the challenge is finding places/activities that work for us all. We believed that surely there were other families who needed this more than we did.

It's been a very tough year for Mark at school and socially. He's entered a stage when he's no longer that "cute little boy in the walker." His brother stands by him, but he has but a handful of friends. Really, only 1 family is comfortable having him over, so we host here most of the time. Mark's classmates are enjoying greater independence and opportunities that he may never have. He lost some of the gleam in his eye. He seemed tired and sad. He just didn't have the same spark. It was as if he'd started to understand that this disability thing was tough, very tough. We wanted to have soemthing to really look forward to, something to bring back the spark.

And so, we signed the papers Starlight Starbright had sent us and never looked back.

We're facing a busy year. In a few weeks, work starts on a huge renovation of our home, the end result will be lovely, and will provide a fully accessible environment for Mark, including an elevator. Finally, we will give him the chance to move around his home without having to ask anyone to help him! But...to do so, we need to get everything, I mean everything out of the house. Yes, we are moving out for 5 months, but thankfully, to our neighbour's house across the street. They are being "snowbirds" down in Florida for 5 months. In fact, they arrive the same day we do...and we move'll move over the day before we leave for the Wish Trip!!!

This has been far too long a message and thank you for still reading. I will be posting more on the pre-trip, and I hope you'll pop over for a visit (see link above). In the meantime, please know that your support is so appreciated. Knowing that you have continued your Big Give and knowing that we are part of it brings a special joy to each day. I simply cannot wait to see what the boys think when they find out!!!

Blessings,
Alison
 

Alison, you've gone and made me bawl like a baby!! First the pictures of your fragile, beautiful, little baby boys and now the letter! Thank you so much for sharing their story. I am so glad you are letting us be a part of your magical vacation. :hug:
 
Allison
I found you as I lurk on the DisBoutique thread. I hope your family has a wonderful time at the World.
 
I've been enjoying your TR so far and look forward to hearing all about your trip. Your boys are amazing fighters and so are you!!! :) We are going on our Wish trip for our DD3 in December, so not too long after you guys. I've been thinking about starting a TR but for now I'm just learning from the pros. ;)
 
Allison, I just wanted you to know I admire how you are such an awesome mom. Please keep posting I love reading about your beautiful family.
 
Hello! NEWSFLASH!!! We saw (from a distance) Mickey and Goofy today!!! Today the "What will you celebrate?" Disney park tour came to Toronto. I had read about this elsewhere, and learned that there was going to be some kind of Disney event happening downtown, but we had no plans to participate.

However, we did have tickets for tonight's Blue Jays/Yankees game, courtesy of our wish-granting organization, Starlight Starbright. The boys and I took the bus and subway (and a lot of walking...great job Mark!), as we were going to meet Peter at the Rogers Centre. And what did we see just outside the stadium? The Disney Parks tour vehicle, where they had obviously been ginving out freebies, signing up people for free park admission on your birthday and so on. And rats, we had missed it. We could see as we walked into the Rogers Centre that quite a lot of people were sporting Mickey Ears - they looked like the "Year of a Million Dreams" ears, but may have been different.

The first pitch was thrown by a Make a Wish child! He was driven out in aN SUV, out he popped with Mickey and Goofy too! There were a number of promotions for the "What will you Celebrate?" campaign, lots of Disney on the sign boards and so on. Mickey and Goofy were on hand to celebrate the 75 Millionth fan attending a Blue Jays game - he and his family won a trip to WDW and season tickets for next year!

All in all, it made a fairly dull game quite a bit more excited and certainly had the boys jazzed up about our upcoming Wish Trip. The boys made a point of snuggling with their Disney stuffies (Goofy for Mark, Mickey for Douglas) which makes me very happy...first, that at age almost 10, I love that they still snuggle their stuffies some, and second, that they're excited as I am about this trip!!!

Have a great night!
Alison
 
What fun! We LOVE baseball around here! I remember seeing a sneak peak at the stadium when they were building it! It looked so awesome! I always wanted to go there for a game, but never got to. DH now isn't such a baseball nut like me and so we'll probably never go. Oh and the fact that we are probabaly 20 hours from there now doesn't help much!
 
Good morning! The mail just arrived, and there's a package for the boys...and I just know it's the first package from the BIG GIVE!!! The boys have no idea what is about to start happening to them...but I do!

The package is from Jill. After some early reservations, my husband has been getting much more interested in the Big Give after I showed him a few pix from other families. He realizes know how happy the boys are going to be when they receive pixie dust!

So...much as it's going to hurt me to do this, I'm going to wait until he gets home to show the boys and have them open the package. Peter is a busy man and he misses too many of the fun moments, so I want him to see this one as it happens!

We'll get the camera out and I'll post more about the unveiling as soon as I can!

Wow...I guess this means we're really going on this trip...Big give package and it's the day for our final payment for the add-on to our trip...must be coming up soon!!!

Alison
 
I am so excited! Jill just mailed that saturday! I am so glad you got a package! Another hopefully will be arriving soon since I mailed mine first! LOL! I think only the day before, but my stuff ALWAYS takes 2-3 weeks to get to Canada for some odd reason! But I KNOW the boys are going to LOVE these and so glad they arrived first!!!!

I think it is great you are waiting for Peter too!

How is the house moving going! I cannot imagine moving out for a few weeks but everything will so great when you'll can move back home!

Have a GREAT day!
 
Oh you're good! I don't know that I could wait!! Can't wait to see the goods! :rotfl:
 
I'm so glad the package arrived. I hope the boys like what's inside. Can't wait to hear more about your trip.

- JILL
 
Well, I think I can wait for Peter, but we'll just have to see.

Here's a little more detail about our upcoming renovation. We live in a 1920's centre-hall plan brick Georgian home, with an attached garage (sized for 1920's cars!) and den above. In broad terms, we are demolishing the garage and den and rebuilding it (basement and 2 levels above ground), then wrapping that addition (on all floors) around to the back of the house, halfway across the house. The driveway is being resloped for drainage and to make it easier for Mark to gain access. The new entrance is halfway between the grade of the basement and the first floor, so it's a few steps up to the mainfloor.

At the new accessible entrance will be a small mudroom, the steps to the main floor, and access to the elevator. The elevator will stop in the basement, at street level, main floor and second floor. On the basement level, we're adding a lot of playroom/hangout space for the boys and converting our current playroom into an exercise room (Mark benefits from a treadmill too!), adding a bathroom and updating our 1920's laundry room. On the main floor, we're adding an accessible bathroom, widing some of the halls/doorways, and the new addition will house a kitchen/family room. Upstairs, the elevator will stop in Mark's "suite" consiating of a fully accessible bathroom (w/roll-in shower etc), a little study space and his actual bedroom. We're also converting our current master bedroom/sunroom into 2 bedrooms, 1 for Douglas and the smaller one for my office. The current 3rd bedroom will be the entrance/clothes storage for the new master (I just cannot call that space the dressing room, but that's really what it becomes) and the new space in the addition becomes the master bedroom and ensuite bathroom. Finally, after 9 years in this house that we love I get an ensuite again!

So, as you can see, it's a BIG job. Preparation of the site and demolition of the garage/den starts at the end of next week, so that's all got to be packed up and moved. We can live in the house for the month of October, but it won't be pretty. Everything has to be packed up, most of it being stored in the living room during construction. One real challenge is the lack of main floor bathroom for Mark, so that's a lot more assistance/lifting. We move out of the house at the end of October...in fact, there's a good chance that our stuff (and maybe us!) will move over the day before we leave for WDW!!!

When we get back from Mark's Wish Trip, we'll be at the new place, which as you may have read is right across the street. Our neighbours are going to Siesta Key in Florida for 5 months. When they return, we should be able to move back into the house, while finishing up continues outside. I just hope the kitchen/family room is done, and the elevator functioning. With that, they can take their time on finishing bathrooms or whatever. Well, not really.

So, that gives you an idea of what we'll be going through in the next several months. and now you can see why I am going to be SO excited when that plane moves away from the gate!!!

Alison
 
Wow, you house will be so wonderful! It will be worth it in the long run but my oh my, you are in for some excitement for the next few months! I am working right now on the next installment of my TR...waiting for pics to download.

Denise
 
Hello! I am so sorry that I haven't had a chance to post before now!!! It's been a rainy, gloomy day around here, so my husband Peter wan't cycling. I put him to work purging and packing pre-reno, and it seems he can't make the decision to part with anything without my agreement! While we've been doing this, the boys have been playing etc and this is the first time I have gotten near the computer all day.

THE BOYS WERE ABSOLUTELY THRILLED WITH THE SHIRTS!!! Jill, thank you ever so much! The boys were so excited to hear that the package came from a fellow Disney/Orlando fan. And they simply could not believe that you made that yourself. (No, I don't think they have ever seen me with a needle in my hand, I can barely sew on a button!) I did take some pictures, but I haven't uploaded them or anything yet. I'll do that as soon as I can, but it won't be before tomorrow. They loved the puzzles and luggage tags too. That WISH trip logo is so cute!

For someone who wasn't too sure, Peter certainly was impressed last night. OK, I'll admit it - I think he was kind of jealous of those cute Bart shirts! Maybe we'll let him buy a souvenir shirt, but it will never be as precious as the shirts custom made for Mark & Douglas with love and pixie dust. Thank you again, Jill!

Tonight, Peter and I are driving out to celebrate with friends whose own reno is just finished. They renovated and added onto an old schoolhouse in the country and I'm told it is stunning. I'm hoping it will give us motivation as we carry on with our own reno.

I'll post pix as soon as I can!
Alison
 
Hello! I am so sorry that it has taken me SO long to post this update. I’ve posted before about our upcoming renovation and we start on Monday! The first stage will be to prepare the site and demolish the garage and the den…yes, the very room in which I am sitting, writing this message. Someone is supposed to come on Friday to run a cable line through to my dining room so I can set up my office there.

But to more exciting things…Yes, the first Big Give package arrived on Friday (oh, how embarrassing that it’s taken this long!). The boys were so surprised when I explained about the DISBoutiquers and the Big Give and that they are part of it all. I think some of this stems from Mark’s disability and medical issues having always been just part of the fabric of family life for us. Part of what makes this Wish Trip so special is that it’s a time to recognize that we do face this together and now it’s time to enjoy a little magic together!

So…the first package came from Jill and it was a HUGE hit!

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At this point, they were still pretty incredulous and it was all just sinking in. The package was well wrapped, so Peter had to get out a knife and help out. First items out were 2 Simpsons mini-puzzles!
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Mark decided he wanted to get a closer look…

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And then we found some wonderful luggage tags, specially made just for us!

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And to top it off, wonderful Bart Simpson t-shirts, perfect to wear when we ride the Simpsons Ride at Universal!

Sorry, they didn’t try them on when I had the camera out. I promise to do better! Mine are not the skirt twirling types!

Here’s Mark
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And Douglas

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Here’s a close-up of each of the shirts

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I have shown these shirts to a number of people and they are amazed by the quality, that a "real person actually made that?!?" and most importantly, they are so touched by your generousity.

Thank you, thank you, Jill!

Oh my, gotta go to the door...the mailman is back!!!

Twinmum
 
Your pictures aren't showing up in your post, so I just went to your photobucket account and peeked around. I love all the pictures of your boys. They look like such sweet kids, and handsome too!

Jill did a wonderful job on those Bart Simpson shirts!

Jill and Jessica: Did you guys mail these things out first class or priority mail? I just shipped a package today with first class mail. I hope it gets there soon! I'm not TOO far from Toronto, so hopefully it won't take too long.
 












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