Moments that Matter – Big and Small December 14 2014

The art of living in the moment can in part be deemed by taking a moment to reflect on the good things that have taken place. Today we look back to the book launch of the Hailey’s Dreams Princess Books celebrated with a Royal Scavenger Hunt.

It was a mix of fun (on a bitterly cold December day) incorporating the spirit of Hailey’s list of 32 life dreams. Guests scoured the City of Fredericton gathering clues about Hailey’s dreams to win prices, going to an author reading, watching a featured video, getting a royal makeover and kids popping their heads into a stand to have their picture taken in the royal scene – all wrapped into the thrill of a royal tea party.

What of the books and Hailey’s on going dreams?

Hailey’s dreams are moments to be shared and treasured. Amid tears, laughter, and dogged persistence with a tribe of supporters, all but one dream has come true. With the risk waiver required for riding in hot air balloons, it is likely that this dream will remain outstanding. When the opportunity presented itself for me to ride in a tethered balloon this fall, I took it as a must-do as a tribute to the single remaining dream for Hailey. There is much to reflect on from the inspiration of Hailey’s dreams. Having the stories on paper and beautifully illustrated helps to give us a glimpse into the insatiable spirit and zest for like that Hailey has. It is indeed a story of inspiration. It’s a reminder to think big. It’s a reminder that small things can have a big impact.

For Hailey’s parents, publishing the books was important to convey their appreciation for the overwhelming support that came from so many, on so many levels. Hearing about the seemingly endless kindness was an instigating motivation for me to find a way to tell the stories.

The books also serve as a means of raising some funds for the foundation set up for Hailey and to bring awareness to the MLD (Metachromatic Leukodystrophy) disease.

More than anything, the books are meant to share Hailey’s heartwarming story and collective acts of kindness.

 

What is the toll of MLD on Hailey now?

Earlier in the year it became necessary for Hailey to have a feeding tube put into her stomach. The progression of MLD seemed to be reaching an alarming stage. Some may have understandably viewed the feeding tube as a bad indication. I know I did, not knowing much about the benefits. Certainly it carried something of an emotional weight. In truth, the feeding tube eased a great burden of getting Hailey the nutrition that she needed. While she had lost most of her ability to chew, she was still able nibble on the foods she liked but with the worry of daily nutrition removed.

There have been many months of relative stability since then. The family has maintained an active life, albeit modified to Hailey’s physical limitations. There have been many joyous moments beyond the 32 dreams, not the least of which was traveling to Ottawa for Hailey to be the flower girl at her Aunt Becky’s wedding on Easter weekend.

How do they keep active?

Hailey’s parents are champions of maintaining an active life as a means of creating happy moments and in keeping a healthy perspective on the realities of restricted mobility. The challenges of getting around, including going to routine doctor appointments, were eased in May when they received a used wheelchair accessible van through a dear friend.

They carried on through the summer with the enjoyment of swimming. Hailey returned again to the animal camp which you will know from reading the Hailey’s Dreams Princess Books is one of her favourite things.

How is Hailey included at school?

School routine ranks high on the priority list of keeping a balanced life. Hailey loves being around people. The principal at her school will tell you, “Hailey is like family to us.” The teachers and students are very protective of Hailey and care deeply for her.

In the early days when Hailey was losing her mobility, the school had to rearrange classrooms to get around the issues of the older building that did not accommodate disabilities. They quickly installed a make-shift ramp as a temporary solution. The ramp, by the way, opened the possibility on a broader scale for other community members with restricted mobility to enjoy coming to the school for such things as Christmas concerts.

In the long-term, they needed an investment from the government to live up to their commitment to make all schools accessible. Next month Hailey’s school will receive a much needed installation of a wheelchair accessible elevator. That’s a moment all involved are anxiously awaiting.

As a side note, Together We Rock is an organization with some great informational tools for the promotion of inclusion and accessibility for people with disabilities. http://togetherwerock.com/

What is next for Hailey?

Recent weeks have brought new worries with Hailey as she contracted some form a flu virus and setting her back to a certain extent. Hailey’s inability to talk complicates the ability of her caregivers to know what is needed and even whether she might be making a turn for the worse. As much as we might will it all away, the reality of taking each day as it comes remains a constant.

That said, plans are made to escape the winter woes with a trip south in March. Looking forward to precious moments can be as beneficial as savouring the day-to-day and reflecting back on treasured moments. I treasure the moment I heard Hailey laugh when I showed her the illustrations in Princess Pinch Me and as I read part of it to her at the book launch. And, too, I treasured seeing a picture of the moment Hailey’s best friend read to her about the dreams they shared together.

Your kindness toward Hailey and her family carries great value. Thank you for every moment of that you do and have done.