To suggest that Thanksgiving 2012 was a special time would be a gross understatement. Rather than stuffing ourselves with turkey and watching the Detroit Lions somehow lose another game (I digress), my family packed up to travel to Montreal to celebrate a Make-A-Wish event granted to my daughter Kacy. Many of you have read before about the special 10 year old that I get to live with and be inspired by each day. For those that don’t, Kacy was born with a rare genetic disease called Cystinosis (Sis-Ta-Know-Sis). [You can read more about Cystinosis at the end….there are too many other exciting parts to this story to get detracted by the details of the disease – and besides that’s how Kacy chooses to live each day.]
On Thanksgiving morning we (Kacy, my wife Jen, son Matt home from The University of Kansas and son Jack) were picked up by a stretch limousine for our trip to the airport. It was early, but the excitement of what was to come took away most of the sleepiness. Now you know that a trip to the airport isn’t always without hiccups or delays….but after a short weather delay we were off to Montreal for 5 days. Our trip would be capped off by meeting and seeing JUSTIN BIEBER in concert. In case you are not into current pop music, think Elvis Presley, Michael Jackson, or perhaps Madonna during your youth. Yep – he is that big – the current king of pop and the love of many young girls (and some older ones based on the reactions during the concert).
Our family spent the initial days visiting Montreal’s sites like the Bio Dome, IMAX theatre, and many fine restaurants (we even visited some not so fine ones). We walked the city for miles – laughed a lot – got some exercise in – even got our share of sleep. Kacy would have been fine staying in the hotel pool every waking hour – it’s one of her favorite things to do.
The Big Day
Monday was the BIG day – the day to meet JUSTIN. Needless to say, Kacy was excited from the moment she woke up. She began planning her day – her hair – nails - the outfit (you can’t wear just anything you know) and planning what she might say when she met JUSTIN.
Our directions were to be in the hotel lobby at 3:45PM sharp….Kacy was ready by 1PM….and at 3:30 we made our first steps to the evening’s event. Once again we were greeted by a very friendly limousine driver who escorted us to the limo for the short drive. Because we were early (their dad is a planner) the driver paraded us around town for a bit to give us a Hollywood experience. While they may not admit it, Matt (18) and Jack (17) especially liked the attention.
As we approached the Bell Center, the location of the concert, crowds had already gathered and they wondered could it be JUSTIN in the limousine? My son Matt, who has a slight resemblance to JUSTIN (if he shaved and was 5 inches shorter), decided to have some fun with the crowd. Wearing his hat pulled down and cracking the window just enough for the mob of young girls to catch a glimpse he started waving. At one point a group of girls began screaming as they raced to catch the limo. I am not sure what would have happened if they had caught us!
As we found the entrance and got out of the limo we began to feel the “hugeness” of the JUSTIN phenomenon. Girls started taking pictures of Matt until they finally realized he was much too tall to be JUSTIN – but we had fun with it anyway!
After standing in line to get our tickets at Will Call, we were escorted (really whisked) to the front of the line to go in the special door. We were greeted by Justin’s manager Kenny. For those that have seen the JUSTIN BIEBER movie – you would recognize him. Kenny was a very unassuming and friendly man who treated us like his guests. From there we were lead through the back hallways of the stadium…..past masses of people just hoping to catch a glimpse of JUSTIN. As we walked by the crowds, I knew people were wondering, “Who are they? Are they famous? Why do they get to go back there?” On our trip back stage we witnessed the massive amounts of equipment that the Bieber tour travels with - it was truly astonishing – who coordinates all of that? (sorry you are getting the story through a middle aged man’s perspective not Kacy’s)
Our back stage travels ended in a make shift greeting room – this is the place that Kacy would meet JUSTIN – can you feel the excitement!? As you might imagine, you don’t get to walk in and see the star right away, some waiting is to be expected. We just didn’t know if it would be 10 minutes or one hour before JUSTIN came in.
As Kacy waited, somewhat patiently, for JUSTIN to arrive she periodically tip toed to the room entrance to see if he was in sight. At one point she sat down and said, “I just know my face is going to be as red as a heart.” Kacy was definitely excited…..and nervous. Then, the waiting was over; JUSTIN BIEBER arrived into our room!
JUSTIN arrived carrying his young brother in his arms. I thought Kacy might have seen a ghost, her face was so white – not the red she was thinking (that did come later though). JUSTIN immediately sat down between her and one other girl receiving a Make-A-Wish event (Berkeley from London, Ontario). Justin asked their names – what they liked to do – and gave out some hugs. The next 10-15 minutes (I think – time kind of stood still) were filled with exchanging gifts and lots of picture taking. Kacy, wearing an “I Love Justin” t-shirt had another shirt made for JUSTIN that said I Love Kacy (I bet he hasn’t taken it off yet!). Ok – he wasn’t really interested in putting the shirt on – he has an image to uphold – I get it. JUSTIN’s team provided the girls with gift bags of their own containing a shirt, photos and other Bieb items – needless to say they were a big hit.
The girls snuck in a few more hugs and then it was time for the star to get ready for his concert. The VIP treatment continued as Kenny escorted us back stage and we entered the front of the stadium – row 6 to be exact. We settled into our seats and quickly put in ear plugs – we being the parents – Kacy and Berkley figured they could go to the stage for an even better view and no way were they going to drown out any of the noise … er I mean music. As an aside – I never imagined just how loud 40,000 screaming girls could be – let’s say for some of us the ear plugs were necessary. As you might expect, the concert was a huge hit and Kacy never sat down once. Watching her smile during the concert was worth any potential permanent hearing loss!
Our entire family cannot express our thanks enough to the Make-A-Wish Foundation and their dedicated volunteers. From their first visit to ask Kacy what she might want for her Wish, to taking care of every detail to ensure a spectacular experience, they were true angels.
We have been back home for almost a week now and the residual smile from the JUSTIN experience is still plastered on Kacy’s face. A Wish cannot cure Cystinosis or any other disease – but it certainly impacted Kacy as well as all of us that continue to be inspired by her.
Cystinosis is a rare disease that is typically diagnosed prior to age 2. Cystinosis is a genetic metabolic disease that causes an amino acid, cystine, to accumulate in various organs of the body. Cystine crystals accumulate in the kidneys, eyes, liver, muscles, pancreas, brain, and white blood cells. Without specific treatment, children with cystinosis develop end stage kidney failure at approximately age nine. Cystinosis also causes complications in other organs of the body. The complications include muscle wasting, difficulty swallowing, diabetes, and hypothyroidism. It is estimated that at least 2,000 individuals worldwide have cystinosis, though exact numbers are difficult to obtain because the disease is often undiagnosed and/ or misdiagnosed.
About Make-A-Wish Michigan
Make-A-Wish Michigan grants the wishes of children with life-threatening medical conditions to enrich the human experience with hope, strength and joy.
Since 1984, Make-A-Wish Michigan has granted wishes to more than 7,000 special children in Michigan. Of each dollar spent, 80 cents goes directly to granting wishes for children with life-threatening medical conditions. Funding comes from individual contributors, special events, corporate donations and sponsorships, foundation grants, workplace giving programs and planned gifts. These wishes would not be realized without the dedication and support of the volunteers, donors, and staff, as well as exceptional leadership from the Board of Directors. For more information visit www.wishmich.org