Throughout Tayt’s life, early on when there were days, many, that we didn’t know if she would make it to her battle with cancer, there has really never been a moment where she has complained or asked “Why me?” The nurses and doctors at the various hospitals we stayed at would always marvel at her spirit and the way that she would just light up a room. When she was in the intensive care unit, we were such frequent fliers, that the personnel would always stop in just to say hi to Tayt. That is the type of joy she spreads as if effortlessly.
The Crown That Put Princess PuPuTay in Motion From Nana Sue
When she was little, anytime that should got upset, or more probably frustrated, for as little as she was, she could really make a scene. When Tayt was two, right before her airway reconstruction, she received a crown from her Nana Sue, that was Colin’s mom, who has since passed. Donna always knew exactly what the kids wanted. She put her heart into finding the perfect gift to make them feel special. For Tayt’s second birthday, it was a crown made from real and fragrant flowers.
Watching Tayt Struggle Was Hard For Me; But She Always Kept Her Chin Up
One thing that Tayt did not handle well was speech therapy. It wasn’t that she wanted to be obstinate, it was just that due to having the breathing tube in her mouth for the first three months of life, her palette was super sensitive. When she would try to eat something, there was a horrible gag reflex. And with it, up would come whatever food we fed her through her G-Tube. It was a very painstaking process to get Tayt to gain weight. Back then, we didn’t know that she had Primordial Dwarfism, so I felt responsible for her size and her inability to gain weight and grow. Every time she threw up, my heart would sink and guilt would overcome me that I couldn’t help her.
Tayt Wasn't Budging
The speech therapist's name was “Laura.” She would come with her bags of tools and aids, which really seemed more like a bag of torture. She would get out her toothbrush to try to “desensitize” Tayt’s gag, but it never work. Coughing, wrenching and vomiting would ensue. The day after her second birthday, I couldn’t take it anymore. We were sitting in the dining room and she was fussing at Laura who was just trying to do her job. She had crossed her arms over her chest and clenched her mouth so that Laura could do nothing but sit there.
Listen Princess PuPuTay...
Watching the entire scene, I knew that the whole process was fruitless. But as her mother, I would have done anything if I thought it would save her from malnutrition and a failure to thrive. Just as she was giving Laura the hardest time ever, I walked over to Tayt and I put the crown that she had gotten the day before on her head and said to her “Listen Princess PuPuTay, stop acting like a princess and get your work done.” I have no idea where the name came from, but you know how little kids are with the mention of “PuPu.” She burst out into laughter, so much so that the valve, protecting her trach at the time, shot clear across the room.
After all that she had endured, the prodding, the poking, the late hours and post surgery pain, all it took was a little comment to turn her entire mindset and world around.
Princess PuPuTay's Adventures Intent
Tayt and I do what we can together. She is now 22, and doesn’t get to go out a whole lot. She has a lot of physical limitations and it is painful for her to get around, Just a trip to the grocery store is enough to wear her out. Building the website together was the first of our goals. The second is to make her line of “Princess PuPuTay’s Adventures” children's books come to life. I want Princess PuPuTay to make other children’s load lighter as it did Tayt’s, and who better to make a book that will delight children than Tayt, who is still a child at heart. No matter what life has brought her, she has not hardened.
She Was Born Twenty Years Ago
After we came up with the book title and I explained what happened the day Princess PuPuTay came to life, I started looking through her artwork and came across a little girl that Tayt had drawn. I immediately held it up to her and asked “Is this an original? Did you draw this little girl?” Tayt looked at me like it was no big deal and said “Yes.” It was in that moment that I knew Princess PuPuTay was meant to be. Tayt had drawn her before she even know there was a “her.”
Stay Tuned...
We hope that someday you, your children, and grandchildren will be as delighted by the thought of Princess PuPuTay has Tayt was that day when she put a crown on and left her sadness behind.