Expecting the Unexpected- A Tribute to Jeff

(Warning: This blog post may not flow or make sense- I just needed to write down some special memories and times in my life that meant a lot to me because of Jeff! I hope this brings some smiles and laughter to you and if you didn’t get the chance to really know Jeff- I hope this provides some insight of just how truly special he was.)

Everyone has a handful of individuals who truly touch their lives and you just can’t imagine life without them- Jeff was one of those people for me. Being his younger sister, I have known him my whole life. We were best friends growing up. I could literally walk into his room, sit down beside him and share anything with him- the good, the bad, the ugly. We did a lot of things growing up together. We were fortunate enough to have several friends in the neighborhood and were constantly outside. Jeff always hung right in there with everyone in whatever adventures we would get into. Capture the flag (in which I loved being on his team- we would find the flag and give it to him and he took off with it in his wheelchair- outlasted a lot of them!), flashlight tag, pulling us around on rollerblades in the basement, doing burnouts in his wheelchair, being part of our N64 video game competitions, especially Goldeneye, and endless amounts of board games we played. We shared a lot of great memories growing up and I am very thankful for those times.

There weren’t always happy memories growing up though. I was young and learning about Jeff’s disability. He was diagnosed when he was three with Duchenne Muscular Dystrophy in which was explained to me that his muscles would deteriorate over time and not regrow. The doctors said his life span would likely be late teen years. I didn’t understand the full meaning of it but I slowly watched the progression. I will never forget the day that my mom came to pick us up after school from the babysitter’s house, Saint Shelia we called her- such a special lady and loving house to be able to stay after school each day- but my mom pulled up and unloaded a wheelchair from the back. I was in shock. Jeff sat in it and from that day on, he was in a wheelchair. I will be honest- I blamed my mom over the next few days for “making him sit in that chair” and that is why he had to stay in it. I didn’t know, I didn’t understand and I had a lot of unknown anger towards his disease.

But, Jeff, he never did. He was never angry or bitter about any of it. In fact, he said to me, people ask why me- why do I have to have this disease- and he said “well, why not me”.  To be placed in this trying situation, he never let it get the best of him. He used it as fuel- to show how strong and brave he was. And my goodness- he was!

One funny memory I have of him (and Lord knows we liked to give our mom a hard time sometimes- sorry mom!) but we were coming home from the babysitters one afternoon- all in the van together and my mom made a turn onto our street and almost took out a sign close to the side of the road- well without missing a beat, Jeff starts singing “I saw the sign, and it opened up my eyes…I saw the sign” – we all busted out laughing, including my mom. He always had a witty comment or funny thing to say and that song became a song we would sing when passing that spot!

Jeff and I were really close growing up. My parents wanted to take us to see Michael Jordan play when he played for the Wizards. So we drove to DC for a weekend and had tickets to a game- Jordan’s last home game with the Wizards. Jeff was a big Michael Jordan fan so I knew that trip was special for him. Well, when we arrived at the arena, the area in which Jeff could sit – middle of the stadium, perfect view of the court- would only allow Jeff and one guest. Well, I hate to brag but Jeff picked me to sit with him. It was so much fun! My parents and Chris had to take their seats on the other side of the arena! I am sure my parents were a little nervous to leave us but Jeff and I watched and talked the whole game- it was so much fun! That is one special memory I will always keep!

Jeff also had a love for sports cars and speed! He really loved corvette’s and was gifted with a corvette calendar every Christmas. In middle school, Jeff got the special opportunity to ride in one during school! Someone knew a guy that had one and wanted to take Jeff for a spin. I remember the assistant principal coming to my class to get me and I was scared- I never got in trouble- but it was to take me outside to watch Jeff take off. It was a special thing to see him riding in that car! It was even a convertible so he loved it even more!

Speaking of getting in trouble- out of the three of us children- Chris, Jeff, and myself- guess who was the only one to ever get ISS (in school suspension)? Jeff! I remember my mom telling this story and thought it was so funny. She said she received a phone call from the assistant principal saying that she never thought she would have to make this call but Jeff was in trouble. Apparently, someone had said something not so nice to him and he wouldn’t have it- he decided to try to run him over with his wheelchair! Oh my goodness- that was probably not the best decision but he wouldn’t stand for someone being mean to him- he always took up for himself. So my mom laughed, said he needed fair punishment, and Jeff spent a day in ISS for it.

As we grew up, Jeff’s disease progressed. It was hard to sit in his wheelchair all day so spent more time in his bed. My mom retired to stay home with him and Jeff had finally reached senior year! I remember his graduation- along with many others that have shared that memory- in which Jeff rolled across the floor to receive his hard-earned diploma. There were so many there watching and cheering for him! We had a graduation party at the house afterwards and it was pouring rain that night but it didn’t stop so many from coming to celebrate him! Jeff always had a large support group cheering for him.

As the years went on, I graduated from college and had met Jeremy. We dated for several years and finally, on a trip to DC, Jeremy was planning to propose. He left the hotel room saying he was going to get us some drinks from the bar but secretly he was going to call my dad to ask permission first. Well, while asking for permission from my dad, Jeff yells in the background “It’s about damn time!”.  I tell ya, the boy just had those witty funny comments, always at the right time! Needless to say, Jeff approved of us getting married!

Throughout the years though, Jeff faced a lot of battles. He saw numerous doctors, spent numerous times in the hospital, and had several procedures to help support his body with this disease. About 6 years ago, Jeff needed more respiratory support so a tough decision was made and Jeff was placed on a ventilator with a trach.  Jeff was OK with this decision because he wanted to be comfortable- getting enough oxygen- but it was tough. Jeff was a talker and because of the vent- he wasn’t able to do so.  There was a device he could put on the vent to allow him to talk at times but it was hard for him. It required more strength and the vent settings had to be adjusted just right. So my parents got really good at reading his lips and luckily, Jeff was able to communicate via computer. He would type out things and let me tell you- he still typed out some funny things! About a month ago, my cell phone rang and I saw it was my mom calling- I picked up the phone and to my surprise I heard “Hello!” and I recognized that voice instantly! It was Jeff! Oh I got so teary eyed and put him on speaker phone to let Caroline hear. She just started smiling! I hadn’t heard his voice in so long- probably 4 or 5 years. It sounded the same as I always remembered and we talked for about 20 minutes- about movies, songs, and life. I asked him what made him call and he said “I just felt like talking”. That is probably the most recent special memory I share about him.

Over the past couple of weeks, Jeff had some concerns with lab work but my parents and Dr. Khoury (who was absolutely phenomenal) tried their best to keep him out of the hospital during this pandemic. The last couple of days, Jeff was feeling better and his labs were back to normal. On Sunday, May 10^th, Jeff’s body just couldn’t do it anymore and he passed away. It was how it should have been- at home, in peace. No more fighting, struggling, or in a hospital- just quietly and peacefully.

It has been hard – we all knew Jeff wouldn’t be with us forever, but now didn’t feel like the time. It’s going to be an adjustment for my parents- they dedicated their lives to taking care of him and they never wavered from it. They fought for him and quite frankly, they should be certified nurses for all the things they have learned to do for him. They spent hours researching equipment, strategies, and information to help Jeff. I know they are a big part of why Jeff lived as long as he did. They never gave up on him. I can’t speak enough volumes about them- they are the definition of a parents love.

Although Jeff is done from this Earth, I know, without a doubt, that he is watching over us. It is such a full circle experience to have Caroline and I absolutely know Jeff is watching over her because he too has been where she is. His love for her was so strong and he adored her. Now I know he will always be with her and that eases my heart some. I know Jeff is no longer struggling and he is rejoicing in Heaven with Gee and Granny. Rest in Peace, sweet friend, we will see you again! I love you!