From A Fellow Sibling

Dan and I receive lots of emails from wonderful people. Sometimes it's difficult to respond to everyone but we'd once again like to affirm that we read and appreciate every word. The words below were sent to me from Sarah Butler, whose younger brother has DS. I rarely hear from fellow siblings and this email was just too good to keep to myself. (GO PHILS)



Will,

I'm sure you get these kinds of e-mails a lot, but I wanted to send you one anyway. I came across your blog earlier this week completely by accident. Actually I think I was procrastinating at work and read an article about how doctors were actually happy that the number of Down Syndrome births had decreased due to better prenatal screening, which really made me kind of sad, and in the article your name was mentioned along with the fact that you were creating a documentary with your brother. So after spending another half hour or so avoiding work by Google-ing you and checking out the websites that mention you and your brother (I promise I’m not a stalker), I discovered and started to read some of your blog. Unfortunately I can’t play internet videos on my work computer, but when I got home last night I went back to your blog and started looking at the scenes you have posted. It would be an understatement to say that I was blown away watching them!

Let me start at the beginning. My name is Sarah and just before I turned 7 my brother, Matthew, was born with Down Syndrome. He was pretty sick when he was born; he had a hole in his heart and had to be flown to another hospital with better resources to take care of him. He still has a defective valve in his heart, but thank God has never had any serious problems, nor did he need heart surgery or anything like that that so many children with DS need. When my dad first told my sister and me about my brother, the only reference we really had was Corky on “Life Goes On”. From the time he came home, though, it was never any different than having any other little brother, except that he started going to school earlier in his life than most kids and my parents had to work a little harder to get him what he needed in school. And also I may be a little more protective than I may have been had he not had Down Syndrome (and probably still am).

Matthew turned 18 in June, which is something that I still can’t even believe. It makes me feel old! Looking back on the last 18 years with him, I can’t imagine my life any other way. At the very least, I would be a very different person had he been anyone other than who he is. I have always felt that the world would be a better place if everyone had a Matthew (or a Dan) in their lives. He has brought so much joy and laughter to my family and has made us appreciate the little things in life so much more. Watching him as he has grown up and developed his own interests and personality has been quite amazing. His two very favorite things in life are animals (especially dogs) and country music. His memory on either subject is incredible and I’m still amazed every time we see a dog I’ve never even seen before and he schools me on the breed, and usually its country of origin and purpose, then runs to find it in one of his dog books as soon as we get home and he’s completely right about everything. He’s also like an encyclopedia for facts about country music artists. When he’s home, he can usually be found in our family room watching CMT or listening to all the country music on his iPod, often with a cowboy hat on, strumming along on his guitar. One of his rituals on Saturday and Sunday mornings is to wake up and immediately go on the computer to cmt.com where he checks out all the artists and their bios and videos, always ending his morning with LeAnn Rhimes’ page (like I said, it’s a ritual – he’s a creature of habit and is pretty stubborn about changing his routine). That was an interesting thing I noticed in your videos also – it seems like your brother also has a passion for music. Not long ago I read the book that Chris Burke co-authored about his life and he mentioned that he also loved music and has even recorded a few songs with a few guys he knew that had a band. I just thought that similarity was interesting. For Matt’s 18th birthday, my mom, sister, and I brought him to Nashville to tour the country music capital and he had the time of his life. He has been fortunate enough to have had the opportunity to meet a few of his country music heroes over the past few years. People have been so kind to him and it’s been amazing to me that writing e-mails to his favorite musicians have not only been read by them, but have sometimes come with offers of concert tickets and backstage passes for Matthew. My family jokes about “pulling the Down Syndrome card”, but he’s gotten some really great opportunities out of it. We also laugh because now he’s come to expect that he can just say he wants to meet someone or go to a concert and automatically he’ll be allowed backstage to meet them!

Anyway, watching the videos of your brother and your family really struck a chord with me. I found myself crying at certain parts (especially the dealing with death video – Matthew was like that after our first two dogs died and even a year after would suddenly think of it and break down crying while going to bed) and also laughing very hard at others since they reminded me so much of Matthew (like him at school, or handing his business card out in NYC)! And not only your brother, but your whole family and the dynamic you all have with each other reminds me a lot of my own family. When you guys visited NY I couldn’t stop laughing when you’re Dad said how it made his day that you got free parking! That is exactly something my dad would say. I come from a big Irish family with a great sense of humor, and we spend a lot of time sitting around and laughing at ourselves and each other. I was hysterical at some of the stories you were telling about your brother and things he’s said that made you want to crawl in a hole. We have tons of very similar stories about Matthew. For example, one of the most recent stories involves Darius Rucker (the old front man for the Hootie and the Blowfish) and Matt’s gym coach. Darius recently crossed over into country music and has a few songs/videos out on country radio. Matthew adores him. Darius happens to be one of the very VERY few black men in the country music industry. And when I say few I mean I only know of like one other and he was part of a group. So anyway, Matt’s new gym coach also happens to be a black man, and thankfully one with a good sense of humor, since Matt started calling him Darius Rucker as a nickname at the beginning of the school year. My mom wanted to die when she found out! The gym coach seems to think it’s pretty funny. He finds ways to get away with so many things that no one else would be able to! His innocence and lack of sensor between his mind and his mouth make for some pretty funny (and embarrassing) moments.

Matthew is also quite the ladies’ man. My uncles all joke that he’s the smartest one of all of us and that the whole Down Syndrome thing is just an act that he knows the girls can’t resist. He is a huge flirt and loves making new friends. By the end of just about any party you can find Matt on the couch with a pretty girl scratching his leg or his back. I don’t know how he talks them into it! At our cousin’s wedding a few weeks ago he took my camera for awhile and when I got it back it had about 100 pictures on it of him with almost every single person at the wedding, including people he didn’t know and women on the wait staff. The table next to us was full of some of the bride’s family that we’d never met before and by the end of the night Matthew was dragging all the girls out on the dance floor, then after a little while was back at the table hanging out with their boyfriends/husbands like one of the guys. Fortunately, everyone always seems to love him and enjoy hanging out with him. He is a huge ham and loves to be the center of attention, performing in front of anyone who will watch at the drop of a hat. And once he gets a laugh out of you, it’s over…he knows he has you and there’s no turning him off. He is the least shy person I know and also somehow knows more people than I’ve ever known in my life. We call him the mayor. Whenever I take him out, around town or even outside of town, without fail about a dozen people say hi to him and he introduces me to someone he knows (like the Dunkin Donuts cashier, for example). He also has an incredible sense of humor and makes us laugh every single day. A few years ago he fell in love with “Everybody Loves Raymond” and started quoting Frank, Ray’s father. If you’ve ever seen the show, you know that he’s not exactly role model material. On almost a daily basis, Matthew repeats some line from the show. Over the summer we had a bbq for his birthday. While we were all eating, Matthew took the opportunity to try out one of his new favorite Frank lines. He turned to my boyfriend and said “Hey Mark, do you like girls?” Mark responded, “Yes, I’m dating your sister, of course I like girls.” To which Matthew responded, “Oh yea, then why do you walk that way?” My entire family was useless laughing, and Mark was a good sport about it. We found out later that it was a quote from the show that he obviously liked. People who meet Matthew are often surprised by how smart and witty he is. He always knows exactly what to say and when to make you crack up. Even when he’s getting in trouble, he still has the ability to make my dad crack up in the middle of trying to punish him.

This e-mail has become much longer than I had intended, so I have to apologize (and hope you haven’t fallen asleep yet), but I just wanted to share a few things about my own experience having a brother with Down Syndrome. I figure that if I can appreciate your stories so much, than certainly you might appreciate someone else’s. You are so fortunate to have a gift that enables you to put together what you have so far, giving Dan such great exposure to so many people, and giving so many people such great exposure to someone like your brother. I have always wished that I could do more for Matthew, and for Down Syndrome in general, but I just never knew where to start. I think it’s great what you’ve done and are doing, and I look forward to seeing the finished product! I have read a lot of articles and a few books dealing with the subject of Down Syndrome, not really scientific reading, but mostly dealing with the experience of having a family member who has it. I have to say that as much as I have enjoyed reading some of them, your blog is really the first thing I have come across that is told from the perspective of a sibling. Usually it is a parent discussing their child, or in Chris Burke’s case a semi-autobiography. Your blog and videos just really hit home as I could relate 100% to the subject matter. More of us siblings should get material out there for the rest of the siblings out there! It’s just interesting to see someone else face the challenges we face with Matthew, told from the point of view that would be my own, rather than my parents. Matthew attends the same high school as my sister and I did and I’m sure your family faced many of the same obstacles as my family did in getting him this far. He is in his junior year and, since he can legally be in school until 21, will probably have 2 more years of school after this one. The transition from his school to work life is too quickly approaching, and we are trying already to prepare him for it. I wish they had a “life coach” or something similar to what they did at Dan’s school. Matthew’s education does include life skills, but it would be so useful for them to bring him and other students around the community to teach them how to do everyday errands. We do work on things like that with him on the weekends, but I’m sure having more experience like that in school would be very useful. As of now he has been working in the school store at his high school and volunteering at the local animal shelter, which we’ve had very positive feedback about. My parents have also discussed the possibilities of future employment with places like our local Petco store and they seem to be open to the idea. Hopefully by the time he is ready to graduate, we’ll be able to find something which he enjoys and can earn some money and independence for himself. It would be great to hear some more of your experiences with Dan’s transition and what and how he is doing now. Is he still living with your family near Philadelphia? We are in NY…my sister and I both live and work in the City, and my parents and Matthew live upstate a little bit, near West Point (not sure if you’re familiar with NY at all). I guess that would make us bitter rivals until the World Series is over! I hope that you’re not too bored by this ridiculously long e-mail. After looking through your blog I just felt like I had to reach out to you if for no other reason than to let you know that I appreciated your work and look forward to more. I understand that you all must have a very busy life and probably don’t have a chance to respond to every e-mail you receive. But if you do get a chance, anything that you would be interested in sharing would be great. I hope to hear back from you soon, and keep up the great work. By the way I have attached a few recent photos of my family for you to check out. I felt that they were a few that highlighted my family and also Matthew’s personality. Hope to hear back from you soon!

Sincerely,

Sarah Butler