Long before Joey was born, Michele told me something. She said, “Everything happens for a reason.” When she told me that, I thought to myself, “Yeah, OK, whatever.” At that time, I didn’t know how absolutely true it was. Sometimes, in a crisis, we did not know what the reasons were, but eventually, it always became clear.

When Joey was born, with all the problems he had, we thought, “ Why me? Why us?” Then that turned to, “Why not us?” Things happen for a reason. But what could the reason be? Then we figured it out. We, as a family were perfect for Joey. He was born into two close-knit families that would become one because of Joey. He had four fantastic grandparents that loved him unconditionally. He had loving aunts and uncles, several great-grandparents and, at the time one cousin, soon to be three, who would love him and take care of him in different ways. He also had a large extended family. Then there was Michele and me. We were meant for Joey, just as he was meant for us. If there were things I could not deal with, she could, and if she could not deal with things, I could. For example; when Joey was hospitalized in 1998, it hurt me so much to see him go through some of the very painful things that he had to go through, that I could not comfort him as well as he needed, but Michele was right there making him feel better like only she could. On the other hand, meeting with all the doctors was overwhelming for Michele at that time and I was good at doing that. Together we were perfect for Joey.

A couple of days ago, someone who does not know us very well, was trying to console us. He said something to the effect that the last 9 ½ years were agonizing for us. That bothered us a little. Neither one of us felt like we were in agony. Never. We had a very stressful life, filled with almost unbearable pressure. But, without pressure and stress, you can’t make diamonds. And that’s what we were doing. We were making the world’s most perfect, brilliant, diamond, and he sparkled for us every day. Our life was also sometimes very hard. But, hard is not bad. No one appreciates things that come easy. For example, at age seven when Joey started saying his only word “Mama”, it was not only the most beautiful word we had ever heard, it was the most beautiful sound. No symphony sounded better and no canary ever sang prettier.

Things happen for a reason. God gave us Joey so that we could teach him things, so that we could expose him to things in the short time he was on earth. Joey did so many things, saw so many places, and met so many people. We’ll just give you some of the highlights. He met one of the original Mercury Seven Astronauts; he went to Florida several times, Hawaii twice, and Washington DC. He had been to twelve states. He saw a space shuttle launch; went backstage at Sea World had a private meeting with the dolphins, they swam to him and talked to him while he dangled his feet in their pool. He even got to swim with the dolphins in Hawaii; he got to pet them as they swam to him as he sat in the water. He rode on a Fire Truck. He even flew on a Southwest Airlines jet with just Michele and me, three flight attendants and the crew, no other passengers. It seems wherever we went people showed Joey acts of kindness. Anything from strangers buying him Beatles shirts to Chris Isaak holding the door open for him at the airport.

Things happen for a reason. Joey was truly a gift. The things we learned from him are immeasurable. He taught us more than we could have learned from any book, any teacher, any class or any school. You see, the job God gave us was to teach Joey. Most importantly to teach him what love is. In return, Joey taught us what love is. But that was just the beginning. Joey taught us what courage is; what strength is; what dignity is. He taught us about selflessness, dedication, commitment, and focus. He taught us about priorities and perspective. He taught us what the meaning of life is. We are much better people today than we were 9 ½ years ago. Joey brought out the best in us.

Joey was a fighter. He was the toughest person we know. But like all champions there comes a time when you just don’t want to fight any more. That’s what happened Saturday. Joey went very peacefully, he just closed his eyes and went to sleep. He was at home; the three of us were together, just as it should have been.

We don’t like to think he is in a better place. Because his entire family and friends worked hard to make this place a happy place filled with love for him 24 hours a day. We like to think that he has nothing to worry about anymore. No surgeries; no needles; no seizures; no g-tubes; no apnea; no sickness; no formula; no restrictions, like not being able to walk or talk. We figure he hasn’t stopped talking since Saturday. He has been eating hot dogs, potato chips and ice cream. And we are sure he has made his great- grandparents watch Toy Story a few times by now.

Over the last couple of days we have been sitting around talking about Joey and looking at pictures. We wanted to share a few of the stories that have made us smile. Anyone who knew Joey knew that he had a tendency to stay up very late at night and sleep very late into the day. Sometimes we would go to bed and he would decide he still wanted to play. He would roll up on to our beds to wake us up. When we opened our eyes his face was inches from ours. He would get so excited to see us awake he would laugh hysterically and his whole body would shake. We think about the time we took him to see Toy Story 2 and he smiled from beginning to end. We think about him saying, “Mama, Mama, Mama” if the movie he was watching ended and we weren’t in the room at the time. We think about him smiling on the Buzz Lightyear ride in Disney World and It’s a Small World in Disneyland. We think about him all the time. He will live forever in our hearts.

There are some people we want to thank. Not just from us but from Joey as well. The Joubert Syndome Foundation has been wonderful. The love and prayers from people we know and don’t know has been overwhelming. All of Joey’s doctors and nurses who have helped keep Joey well for 9 ½ years and helped keep us somewhat sane. Joey’s therapists and teachers who helped make him be the best he could be.

Then we have our families. We don’t have words to express what we feel about our parents. They have been the best. We could go on for days. They did everything they could for Joey. Everything from caring for him, to playing with him. They afforded us the time to take care of him. And gave us the opportunities to get away for a few hours. His Aunts and Uncles who loved Joey, just because he was Joey. Lastly, we wanted to thank three special people, his cousins. First, Rebecca, who was sort of a teacher to Joey. We remember a time when she was trying to teach Joey how to play with his toys. She tried so hard to get him to hold on to the toy. She was always the first to tell you if Joey was trying roll into an area that he was not supposed to go. Then there is Sarah, who wanted to be like a mother to Joey. I remember a time when Michele said to me, “ Why don’t you pick up Joey and put him in his wheelchair, while I pack up his things.” Sarah jumped up and said, “OK.” She put one arm under his head and one arm under his legs, just like we did, and tried to pick him up. The problem was that Joey was about four times bigger than she was. Lastly we would like to thank Joey’s only older cousin, Kevin, known to Joey as KK. KK always said, “Joey is not my cousin, he is my brother.” And he treated Joey like his brother. He would sing to him and read to him. He would buckle him into his wheelchair and strap his wheelchair down in the van. He would accompany us on medical trips across the country to help with Joey. He never saw Joey as handicapped. He saw him as his little brother who needed his help and protection. Wherever KK was in a room Joey would roll over to him. He would like nothing more than to roll right on top of KK. There was a special bond between them and nothing will ever break that bond. I envy KK, because when he becomes an astronaut and is flying in his spacecraft, he will be a little closer to Joey in heaven.

We would like to thank everyone that is here and those who could not be here. We have felt the love you sent our way and it has been a source of strength these last few days.
 

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