There is nothing better than having friends who are also family. When you are differently-able, having what would be considered traditional friendships can be very difficult. Pheonix relied on his parents and care takers for all of his mobility and health needs. Other than walking in an adapted walker, he could not be somewhere without someone there to provide him assistance to move his limbs. Unfortunately, there are not a lot of children that are certified caretakers. At school and in the community, he had relationships with individuals that volunteered to “buddy” him, but that is a situational relationship. We are extremely thankful to the individuals that volunteer their time so that children like Pheonix can participate in things like baseball and camp. Pheonix never encountered a shortage of people wanting to help him in this life. The relationships he had with his cousins were the most honest, loving, and supportive ones he had in his life. Most of them grew up with him so the fact that he did things differently just never seemed to matter. He grew up with a wide age range of cousins who all brought unique talents he admired and learned from. He loved each of them for different reasons, but he loved all of them just the same.
He held his cousin Nikki when she was only a month old and he had the greatest expression of happiness that there was a small person in his arms. He and Nikki were best buddies when they were young. She insisted on learning how to administer his medications and do his tube feeds. Pheonix was very patient with her as she learned and often spilled formula doing the feeds. To be fair, she was only 4 years old. He would laugh and smile as she apologized and tried to clean up the mess. He loved when they would snuggle up on the couch together and she would hold his hand. He did not like when she would jam his toes into the wall because she insisted on pushing his wheelchair despite her inability to see over the top of the chair to see where they were going. When she was told that he passed away, she told her mom that she was planning on taking care of Pheonix when she was older. I know she would have. Nikki’s younger siblings always followed her lead and love for Pheonix. They were endless entertainment! Even though his cousin Drew was only 2 years old when Pheonix passed away, he has an incredible connection to him. He puts things in his garden and tried to share the candy from his birthday piñata. When his mom asked what he was doing, Drew simply stated “I am sharing with Pheonix” as he pushed the bubble gum through the garden gate. We see the same pure joy smile in Drew’s face as we always saw in Pheonix’s. I hope their spirits stay connected.
The cousins I grew up with also grew up with Pheonix. Casey was the builder in Pheonix’s eyes and he would intently watch as Casey would put together complex building and science experiments. Casey loved to dig in the dirt and play games just like him. Just the sound of his name brought a smile to his face. Growing up they shared a great love and friendship with me, but as they got older, they shared the pain of living with a brain disorder. Casey knew Pheonix’s pain through his own experiences with Chiari and they drew strength from each other. Casey admired how Pheonix always seemed to smile even on the toughest days. Cousin Robbie is Casey’s older brother and Pheonix looked up to him for his creativity and no-holding-back silliness! Robbie sat at Pheonix’s feet and showed him how to move his leg to kick a soccer ball. I don’t think our dog Brenna enjoyed his new found kicking ability since she was more often on the kicking end than the soccer ball. Whenever Robbie was there, dancing was a must! He would give Rob that look and Rob knew Pheonix was waiting to see his new routine. They shared a love of music and movement. Robbie made him laugh with his iPhone farts and firecracker antics and Pheonix gave Robbie hope that anything was possible as long as you were willing to go for it. Pheonix did not always want to have people around when he didn’t feel well, but he liked to have Robbie there. His calm presence relaxed Pheonix.
Dionna and Pheonix were closest in age growing up. He loved to be near her because of her sweet, caring voice. Any time he heard “Pheeny” in her voice, he’d turn quickly to receive her loving embrace. Very much like Nikki, Dionna was Pheonix’s friend and caretaker. She was always there to play a game or help him get something he needed. Dionna loved Pheonix’s laugh and crazy sense of humor. They would make faces at each other and laugh when grown-ups were being ridiculous in their eyes. And then there was Dane, Dionna’s older brother. Dane and Pheonix had a brothers relationship. I told Dane that the best gift he ever gave Pheonix was that he treated him with respect and love. Dane did not fear what others thought when he posted selfies with his “lil’ bro” or when he talked about his cousin to his friends. Their friendship motivated Pheonix to want more and to push himself harder because he wanted to be like his cousin Dane. I always felt bad at family events when everyone would greet Pheonix and he would be looking past all of them to see Dane. When he saw him, this incredible smile would take over Pheonix’s face and there was nothing but joy that Dane was there. Their friendship was sealed when he and Pheonix sat and watched basketball together by themselves, away from the main group at a family event. Pheonix was 8 years old at the time, but had never been away from another adult or caretaker. I sat nervously in the other room and checked several times to make sure Dane didn’t need me to help Pheonix with anything. They both gave me the “what’s your deal” face when I would check on them. The next day Pheonix absolutely insisted he have a basketball he spotted at the store. Pheonix had never shown an interest in basketball before. That basketball still sits in his room as a treasured toy and memory. Pheonix had to be near Dane at every family event because he felt most independent when they were together. He wasn’t a boy with a disability with Dane; he was just a boy.
I am thankful for the friendships Pheonix had with his cousins. It was like having 9 brothers and sisters. They all had special gifts to give with their unique talents and differing personalities. Pheonix admired them all for their different strengths and used their love for him to increase his own strength. Life growing up would have been very different for Pheonix if he had not been surrounded by so many caring, amazing children. He experienced life though their interactions with him. He wanted to stand when they stood and he wanted to laugh and play when they did. Cousins are forever friends and I know that a little spark of his spirit passed to each of them so they can carry him with them and continue filling other lives with joy through their beautiful, accepting hearts.
our beautiful bird 