Getting Pizza, Winning at Life

Success comes in all forms and ways. Last week, success came to our family at a pizza place.

One evening, I gave myself the night off cooking and decided to order a pizza. Jaycee had just finished her medications when I was about to leave to pick up our dinner.

While helping Jaycee off of her airway clearance machine, I asked her, "Do you want to go get the pizza with me?"

She smiled and signed "pizza." That was a yes.

We loaded into the van and made the short drive. Along the way, I gave her my usual reminders, "We are going to get pizza. We are going to eat it at home with your daddy and bubby. We are just picking up the pizza. We are NOT eating at the restaurant. We are eating it at home."

I said this at least twice during the drive and again right before we exited the van.

We walked into the pizza place. Jaycee stood right next to me as we gave our name and paid for our order. Pizza in hand, we then walked out the door and made our way back to the van.

And then I took a second and thanked God for progress.

You see, a few years ago, this would have never happened.

Back then, Jaycee would have walked into the restaurant and veered off to the table that she considers "hers." She would have sat down. Despite me telling her that we were leaving, she would have persisted to sit. I would have paid for the pizza and returned to Jaycee who would still be at the table. I would have showed her the pizzas and reminded her we were eating at home. She would have gotten upset. She might have refused to get up. I may have had to physically lift her from the seat and help her towards the door while juggling the pizza. We would have made a scene. She would be mad and confused. I would be frustrated and stressed. Even though I tried to warn her to prevent this from happening, her limited speech and intellectual disability made it hard for her to understand.

But that was then.....

Thank God for progress! Thank God that Jaycee is understanding and maturing. Thank God I can get a pizza without stress now.

That's a win for us!

The Weekend my Daughter Became a Princess

Our family has had its share of highs and lows. In May, we definitely experienced a low when Jaycee was in the Intensive Care Unit once again for a respiratory issue.

Her illness made life chaotic and scary for a few weeks and meant she missed the last few days of school. After the hospital stay, I was at home wasting time on Twitter when I read a tweet about a pageant for those with a significant Intellectual Disability and/or Developmental Disability called Butterfly Dreams.

I clicked on the link and read about it. I suppose I saw the link at the right time, because I was looking for our family's next high following our hospital low. For some reason, bravery took over, and I signed Jaycee up.

Jaycee is not a girly-girl. She tolerates dresses occasionally. I don't wear make-up or spend hours on my look. We are not the typical pageant people.

But, for some reason, this event interested me. It seemed less focused on the looks of the participant and more on celebrating the individuals.

Later that night, I told my husband, "I signed Jaycee up for a pageant today."

"Huh?" In all the years of he and I being together, he probably never expected those words to come out of my mouth.

He was on board. And so began our look for a dress and accessories for a date on the calendar that would be highly anticipated.

A few weeks later, we arrived for rehearsal. I was immediately surprised at volunteers who had memorized Jaycee's picture and name because they called her "Jaycee" before she even had her name tag on. From then on, it only got better.

We were immediately paired up with a PAL (Person Assisting with Love) who would be with Jaycee the rest of the weekend. The PAL helped Jaycee on stage and behind the scenes. I have to admit that I had reservations going into this about the PAL. We knew absolutely no one at this pageant. That means I would be entrusting my minimally verbal child who sometimes wanders off with a complete (but background checked) stranger. But, my fears were diminished after meeting Jaycee's PAL. They connected right away. We took time to learn about each other. The PAL quickly learned how to use Jaycee's communication device.

Jaycee's PAL and all of the many other volunteers were amazing. Everyone was kind, loving, and positive. I saw no "bad" encounter all weekend. There were times I drifted into a corner of the room observing the volunteers with their participants. There was nothing but love and friendship seen. It was rare to see so many people who appreciated people like my daughter.


Jaycee left rehearsal feeling excited. She kept signing, "Dancing, butterfly, church," which meant she was loved dancing at the Butterfly Pageant at the church (which was actually a school but whatever).

Pageant day arrived with smiles and excitement. We paid our entry "fee," which was a toy donation to a local charity. Jaycee's PAL took care of her for most of the day. I popped in and checked on them at times and assisted Jaycee in the bathroom. Her PAL led Jaycee through interviews with the judges. Jaycee was asked simple questions which she responded to using her communication device and sign language. After the interviews, the girls were treated to professional photographs. Then it was off to hair and make-up for some pampering (all free for the participants)

Jaycee getting pampered!

With the girls all ready to go, it was time for the talent showcase. Being our first time, we didn't sign Jaycee up for the optional talent showcase since we weren't able to explain this to her. Instead, Jaycee watched the showcase with us. It was funny at times, tear-jerking at other times, and all around fun. Each participant ended their performance with cheers and applause from the audience.

Then the magical moment arrived-pageant time! The girls were divided into different groups according to age. The males participating were the escorts for the girls on stage. The pageant started off with a choreographed group dance which made you want to stand and cheer when it was over. The family and friends with us in the audience all gushed over Jaycee and the other participants.

Then each participant was welcomed to the stage to introduce themselves and tell a little bit about them. If they were unable to speak or needed help, the PAL was there to help them through it. I sat nervously in my seat when Jaycee came center stage. Using her communication device, she told the audience her name, address, and about her cats. Of course, I cheered, "Go Jaycee!" as she left the stage. She did it!! In practice at home, she kept saying her name was Ava, so I was beyond excited that she gave correct information and a little tickled that she chose to give out her address. Maybe she wanted fan mail?

Jaycee waving to the crowd with her PAL

It was incredible learning about each participant. Their personalities shined while on stage. After a brief intermission, the evening wear portion of the pageant began. While we purchased Jaycee's dress, there was a meet-and-greet event prior to the pageant where participants were able to try on donated dresses. Since that event was so soon after the hospital stay, we were unable to attend.

This time, Jaycee was escorted across the stage by one of the male participants. Using information I had given on her application, the emcee read a little bit about Jaycee. She blew kisses, waved, and did her pose before walking off. I was so proud of the young girl I saw before me!

After all the participants were introduced and all male escorts crowned a prince, it was time to announce the pageant winners. Each age division was called to the stage. Every girl received a trophy and tiara and was crowned a princess. There was one girl in each division that was crowned a queen. Princess Jaycee took her tiara and trophy with a huge smile on her face.

The Princess

Jaycee had the best time at the pageant. It allowed her to demonstrate her independence from her father and I. It allowed her to show off her personality and abilities. She also got to experience something in this life that she would otherwise not have gotten to do because of her special needs. This experience moved my husband and I in ways we never expected. It was something we will never forget!

The following night after the pageant, Jaycee was unable to sleep. At 10 pm, I entered her room and asked her what was wrong. She signed, "Butterfly, dance, church." She was still so excited that she couldn't sleep. And yes, a week later she is still signing about her dance at church.

I hope and pray that every mother with a child with special needs gets a moment like I had...where they see their child celebrated and appreciated.

Butterfly Dreams is a non-profit organization which provides opportunities for "Differently-abled" individuals to reach their individual goals and enhance their current life by providing a safe platform where each person can embrace courage, develop life-long relationships, and openly communicate their passions to others. They currently have pageants in 4 states with dreams of being in more. They have been recognized and honored for their work by Jane Seymour and Kay Jewelers. Please take the time to learn more about them here: http://www.butterflydreams.org/.