See you later Big Bro

I never imagined that I’d be preparing to bury another loved one but here we are.

Saturday, June 29, 2024 at 11:48 AM I watched my big brother take his last breath. A day I’ll never forget.

Can I tell you about my amazing brother?

Leroy Williams Jr., my big brother who we affectionately called Jr., or “big head” was born September 7, 1964. He was born with a rare condition called Lesch Nyhan Syndrome. I’ll tell you all about what that is exactly in the next paragraph. Jr appeared completely normal at birth from what mother described. It wasn’t until he was about a year old that they began to notice his features were a bit different. He wasn’t developing like a “normal” child, and evidence of dystonia was present. Because LNS was discovered the year Jr. was born, his diagnosis took some time to be determined.

What is Lesch-Nyhan syndrome?

Lesch-Nyhan syndrome (LNS) is a rare congenital (at birth) disorder that affects a child's brain and behavior. A key symptom is engaging in uncontrollable self-injury, including lip and finger biting or head banging.

The disease causes a buildup of a natural waste product called uric acid in the body. Researchers suspect LNS may also affect dopamine levels. Dopamine is a chemical messenger important for healthy brain function.

Children with LNS experience a severe, painful form of arthritis called gout. They also have poor muscle control (dystonia) and mental disability.

There is no cure for Lesch-Nyhan syndrome, and the prognosis is poor. But treatment options can help you manage your child's symptoms and reduce complications for an improved quality of life. (Google)

You learned something new today!

While Jr. had some of these symptoms, he lived a longer than expected, and very happy life! In fact, no other person living with LNS has lived as long as him! He was a special guy.

One thing about us, we treated Jr. like you would any other sibling, so much so that he used to call other folks handicapped as if he was exempt. We capped on each other. We got on each other’s nerves. We fought. We got whoppings (even him)…looking back at it, that might have been considered…never mind 😂. I believe all of this helped him to thrive! He was the biggest flirt! I always joked and said, if he were “normal”, he’d have 12 kids! He was a shit talker, and could cuss real good. I used to always threaten to tell on him. He was kind, caring and charismatic. He could get anyone to do anything for him! He did not take no for an answer. In his mind, he wasn’t limited by his disability. I wish I had half his confidence!

Saturday, June 29th I received a call from his house saying that his vitals were low, his breathing was labored and he was unresponsive so they were calling 911. Earlier that week he was rushed to the hospital for the very same thing, minus the unresponsiveness. The day after his first ER visit I received a call from the ER doc informing me that he had Covid, pneumonia and a UTI. A triple whammy! The call I got Saturday morning felt different. Something in my gut told me something was amiss. I woke up at 4AM feeling sick. My chest was hurting, I was clammy and my heart was racing. I felt so bad that I got up to shower so I could go to the ER, but I sat and calmed myself because while I felt sick, something just felt off. A few hours later, my phone rang.

When my sister and I arrived at the hospital and were taken back, there laid my brother’s frail lifeless body. He was wearing an oxygen mask and looked as if he was asleep. The doctor and a nurse walked into the room. The doctor told us that he wasn’t breathing on his own and that intubating him, or any other life saving methods would not save his life. My sister and I stood there in disbelief and began to cry. She kissed his head. I kissed his head and apologized to him. I apologized because when you’re responsible for someone, you feel like there was something more you could have done even though you knew there wasn’t.

They moved him to another room, stopped his IV and we sat and just watched him. We conversed with him knowing he heard everything we said. We cracked jokes. We were the annoying little sisters that he loved. I played the song that he always sang, and we made calls. Less than an hour later while my sister was adjusting the oxygen mask, his eyes opened wide, he took that final breath and we knew immediately that was it. We knew because we’d seen it before. More times than I’d like to remember. The doctor came in and pronounced him deceased at 11:48AM.

It didn’t feel real. It was as if I was in a simulation. Everything around me felt fake. My stomach felt like I was in the middle of a big drop on the world’s tallest roller coaster. “Again”  is what was on repeat in my head remembering September 13, 2021 when I watched my mother take her last breath. We sat with his dead body until it began to turn cold. We signed paperwork, a final transaction if you will, and we walked out of the hospital one sibling less. Sadness, anger, exhaustion, mental anguish, anxiety, confusion, regret and emptiness…every emotion I felt all at once. It. Was. Heavy.

As we prepare to lay my brother to rest, I try to find peace in knowing that where he is now, his wheelchair is no longer be needed. No hand braces. No speech impediment. Saturday he was reunited with his bestie, our mom and I’m 100% certain that him and my mom are getting on my daddy’s and Jesus’ nerves as we speak.

See you later Big Bro, I Love You! (Your favorite sister 😆)

Until next time…🦋