So, as I said in a previous post, we went to Williamsburg to spend Thanksgiving with my Aunt and Uncle. It wasn’t all holiday cheer, though. On Friday we didn’t go shopping or run around and buy all these great things. I went to a funeral with my Aunt. I didn’t go because it was someone I knew or anything. I went for support for my Aunt and because there was a connection there. 

My Aunt’s neighbors had a son. He died last weekend of complications due to a disease. Duchenne Muscular Dystrophy. The same disease my brother has. He was only freaking 21-years-old. And just two days before he passed, he was out at the movies with friends. Apparently he had Pneumonia. I’m not sure of all the details - I don’t need to know them - all I know is that one minute he was fine, the next he wasn’t. Which is generally what happens. They knew he had a cold and he had been put on medicine, but… damnit, with how weak the immune system is of someone who has DMD, it can quickly turn for the worst. I know this all too well.

Back in the summer of 2005, my brother got a cold. Mom took him to the doctor and they put him on antibiotics. He seemed to be getting better. One night at about 3AM, mom was helping to put him to bed when he couldn’t really breathe and his face went white as a sheet. I called the ambulance and they rushed him to the hospital. He had pneumonia. They had to do an emergency Tracheotomy so he could breathe. We seriously came close to losing him. For the next 3 or 4 months, he had to stay in the hospital so they could get rid of the pneumonia, teach him how to talk again, get him use to being fed by a tube in his stomach and all that. It was the hardest summer of my life. He’s now 32, yeah he’s completely confined to his bed, but he’s happy. He can use his computer and is just SO brilliant. He’s not afraid to die, but he sure as Hell isn’t ready to go yet.

But, my Aunt’s neighbor. He was only 21. He was SO young. Even for someone with DMD. The life expectancy is mid- to late-20’s. So, my Aunt’s neighbor and my brother are two ends of the fucked up spectrum.

It kills me. That funeral was so much harder for me than I thought. He had the same body structure of my brother. From certain angles, he looked like my brother.

Yeah, I cried. Quite a bit, actually. I felt so selfish because I didn’t know this kid, but there I was at his funeral, crying. And I wasn’t necessarily crying just cause of the resemblances. I mean, yeah, that was part of it. But, I was also crying because my Aunt knew him, she talked him quite frequently. She was so upset and it was so hard not to cry for her pain. And then his family… Good God… that was the most painful part for me. His mother couldn’t even hold herself up. She was crying out to the Lord and to her son in Heaven. I couldn’t understand most of what she was saying because the family was Greek and a lot of them spoke Greek, but… in her tone… I could hear it. I could hear a mother begging for her son to come back to her. No matter the language barrier, you can pick up on body language and figure it out. It made me wish I knew the family and their son so I could just hug them as much as I could. And then offer them each a fist full of Xanax.

I did get a chance to meet his sister. She’s so sweet. When my Aunt introduced us and told her who I was (the family knew my Aunt had a nephew with the same disease) she gave ME a hug and said SHE was sorry. I was so taken aback by that. I hugged her tighter and told her that she shouldn’t be the one expressing sympathy to me. God bless that whole family. Another neighbor was there and my Aunt and I talked to him some. Real nice guy. He said essentially the same thing as my Aunt. Although the family hadn’t been in the neighborhood long, they were ALL so sweet and welcoming. And that their son was just a ball of love and joy. God. It kills me.

Mothers and fathers shouldn’t have to bury their children. Certainly not at such a young age. It’s not the natural order of life. It’s not fair. I’m blessed that my brother is still with us. Especially this far into the game. All things considered, he’s still in pretty good health. But, so was my Aunt’s neighbor’s son. He was still quite mobile and had just gotten his power wheelchair. So many doors were about to open for him. It’s just not fair.

The service was as beautiful as funerals can go. It was so personal and touching and … wow. The Priest talked about how the boy was now in God’s Kingdom, walking hand-in-hand with the Lord. With emphasis on the walking part. That killed me.

The whole experience was very surreal for me. I’ve known since I was in 8th grade that my brother had a time stamp on him. But, as well as he’s doing, it hasn’t been something that I’ve dwelled on. None of us have. But, I think something that hit THAT close to home made us all sit and face reality a little more. That one day, who knows when, that’s going to be us.

It’s just not fair. At all.

All my thoughts and prayers are focusing on that family now. And will continued to be focused on them for a while. They need it. They need all the emotional, spiritual, religious help they can get. They’ve got a tough road ahead of them. I just wish there was something I could do to take away their pain, at least for long enough so they can breathe. But, all I have to offer is thoughts and prayers. And hopefully, that helps some. Ugh.

If you’ve read this whole post and you’re not sure what Duchenne Muscular Dystrophy is, here is the wiki for it: http://en.wikipedia.org/wiki/Duchenne_muscular_dystrophy. Throughout the years, I’ve researched the disease all to Hell, and the wiki is accurate.

Another thing is, there IS experimental treatments for it, but treatments are expensive and have to be performed in the early stages of life. I think sometime before the age of 8.

Usually sometime around St. Patrick’s Day, places like Lowes, Kroger and a handful of convenience stores (like 711) will do the shamrock donations for the MDA (Muscular Dystrophy Association) in amounts starting as low as $1. Almost all my friends that know my brother keep that in mind and give what they can. I urge you all to keep your eye open for that and donate what you can. It really does go to a tremendous cause. They have MD Camp for young kids in the summer. Which allows these children to go to a specialized camp designed specifically for them. Which is amazing because in everyday life, these guys won’t even get the chance to play football, tag or tackle. Most of them won’t have the muscular strength to even ride a bike (as the specific mutation of the disease that my brother my Aunt’s neighbor’s son had affects the feet and legs first, and at an early age to boot). My brother was 8-years-old when he had to be confined to a wheelchair. I think my Aunt’s neighbor’s son was 12-years-old. Little boys should be given the chance to play. And your dollar will help that cause. And hopefully, it’ll be the dollars the MDA and scientists need to make treatments and a cure affordable for the average family and allow them to make it more definitive.

That being said: here’s some of my favorite photos of my brother and I when we were A LOT younger. :) He’s my big brother and we’re as close as siblings come. He’s my world and my hero. <3