Asking For Help and the Power and Promise of Hope

 
This is the story about asking for help, the power and the promise of hope, about two sisters, lots of glitter and curls, and how fairy tales can come true. 

I have this standard joke I make, when people ask about our family’s summer vacation plans.“ The Cleveland Clinic” I joke. Serious , when I consider the expense, time and planning these trips require.  

There is also an Arizona ranch we visit, making great family memories sharing unplugged long weekend time in a log cabin, painting watercolor pictures, visiting with the horses and connecting with nature and each other. These visits too few and far between, are still a medicine for the soul. Visits to the ranch are often spontaneous escapes designed to heal and soothe, refresh and recharge. 

In between these trips, we do what we can to make our own family fun, see the latest movies, visit local kids hang outs. Lately though, it has been more challenging. There is the gap between Zoe’s interest level and actual age, the wheelchair accommodations necessary,  O’s physical stamina, heat issues and navigating crowds.. and sometimes it just doesn’t happen the way we want it to, or work out very well when we try.

One night, cruising online for activities for kids with special needs- I stumbled across a web site for HopeKids.org. It sounded familiar, and I know over the years friends have suggested Make a Wish or other providers, and it never felt right, asking for help. Maybe it was facing the truth, admitting we just can’t do it all.  I wasn’t even sure about Hope Kids, but I filled out the form .

I have been looking for activities where Zoe could meet other kids with medical challenges. She is very social, and smart- and I think its important that she is not always the only kid in the room with wheelchair or walker. That she sometimes sees other kids with challenges pushing the envelope too.  

Fast forward to the email invite received in my inbox. Hope Kids- VIP Event invite to Disney Princess On Ice, Meet the Princess , Royal Makeover  The day would begin with a royal makeover, and limo ride to a “ real” castle- Radio Disney entertainment, dessert bar, Meet the Disney Princess on Ice  in person.. essentially all things Princess for a Day. We would also receive passes to the Ice show the following day. Definitely a “quality of life justification” for missing school.

I started with O, showing her the invite, curious about her interest level. She was definitely “ all IN”  excited to share the news with her sister Zoe. And that’s where the lesson started. Somehow along life’s journey, I had forgot about the simple idea of having something to look forward to.. the excitement of anticipation and how necessary it is for kids too, especially kids who face such physical challenges everyday.  

Zoe was beyond excited, both girls were and for two weeks before the event- told most people they knew about their special invitation. Where they were going, what they would do, who they would meet. And each time I heard them tell their story, I learned that lesson all over again. How necessary excitement and anticipation were, the out of the ordinary special occasions and the power and joy of  looking forward to something special. The happiness of sharing this special time even overpowered the flu bug that struck our house, the tiredness they shared that followed. I was amazed at how they kept coming back to the Princess day to come,they had circled on our calendar. 

So when the day approached, we set out with excitement- I wasn’t sure what to expect, but in my mind- the medicine had already worked. One of the best unexpected benefits for that day was the shared experience of two sisters,having a great time together- just having fun, feeling special, being spoiled. The girls do doctors visits together, worry for each other in time of illness, do labs together- now they were feeling special together in a new and unique way they had never experienced. 

The girls started their day with full make overs, hair, makeup and nails. They traveled by limo to a beautiful castle reserved just for the Hope Kids royal party.  And that day I saw a look on Zoe’s face I have never seen before.. ( astonishment, joy, excitement and happiness ) This was the look as she watched out the limo window and caught her first glance of the castle..  

The girls were treated to lunch and laughter, chocolate galore and an amazing princess dessert table, they danced with each other, the crew from Radio Disney, and even me. O even won cool premiere movie tickets to the new Disney Sharpay movie the girls had wanted to see.  

Satiated, I think we had almost forgotten about meeting the real Disney Princess when we were called outside in time to see her stagecoach arriving, being pulled by a horse and fast approaching the castle from the street.  The girls climbed in for a memorable photo with the Cinderella, who they would see on the ice the next day..  

After a full day of the royal treatment, the girls put their heads together in the limo on the  ride home. They were glowing, happy, content- it was a whole day of good stuff- no medicine reminders, no school, not one occasion for me to say no- as anything they could of ever wished for that day was all provided- including their  new pink princess wands.  

As I watched them, I grabbed this photo - two sisters, content, but it was my heart that was overflowing with happiness at that moment, even more than theirs.

I was so thankful for this amazing day , for how well my girls were treated,  and when I looked over at them again I saw O had her little sisters head against her chest, Zoe’s eyes were closed and O was stroking her forehead. O looked at me then and there was wisdom in her eyes , almost as if she understood Zoe’s fragility, more extreme than her own, yet less so than some of the other Hope Kids we met that day. We both smiled then, at rest with the magic of the day. 

The girls were exhausted that night, but full of the great adventure they had shared. I tucked them each in, reminding them of the Disney on Ice show we would see the next day.. (complimentary seats that accommodated both wheelchair transportation and Zoe’s low vision.The same type of seats, that I have priced at other venues to easily exceed $ 50.00+ a seat, ) .

I lay in bed that night, replaying the memories we made that day. Sleep was a long way off.. and I thought about how this experience had changed us. How enrolling Zoe as a Hope Kid, was  accepting help from others- and how rewarding it was to have her sister and I both share her happiness. How I had underestimated the transforming experience I saw in both girls before and during this event- the true power and promise of hope at work , that kept them looking ahead, looking forward to their special day. 

Finally, I began to drift ...realizing that although I was 43 years old, I had learned something else that day, while watching both my princess girls, all smiles, glitter, curls and ruffles.. I had learned that sometimes Fairy Tales do come true, and with some hope thrown in, may even end Happily Ever After.

"There is a need to keep kids focused and thinking about the future and looking forward to the future. The more positive their attitude, the better their chance of recovery."- www.HopeKids.org

 

A Special Thank You to Hope Kids.org,  Jay Garcia Hinkle, Bridget Asheim, The Castle at Ashley Manor of Chandler, AZ,  The great limo guys ( on the spot with Zoe’s walker and wheelchair stroller.) the great  royal make-over crew, the fabulous chocolate cupcake makers, The Radio Disney team, and the folks behind the scenes planning this fabulous Disney event) 

 

Comments

[Jackie]

Love, love, love this post! The girls are so beautiful, and they have a princess of a Mom. Thanks for sharing about how important anticipation is and making dreams come true.

Joyfully,
Jackie

Happily Homeschooling my special needs sweetie!

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[Daria]

What a great story. Thanks for sharing, I'll be checking out hope kids. Happy Mothers day to you.

[jamie]

We love hopekids too, and I know what you mean about not wanting to ask for help or admit it is needed, I'm the exact same way!