Saturday, November 26, 2011

Growing up with Daniel

I've mentioned elsewhere that my older brother Daniel was born with Cornelia de Lange Syndrome. Growing up with a disabled sibling was all I ever knew, so it was my normal.

But a few weeks ago, I was talking with a friend whose second child has been diagnosed with Joubert Syndrome. She is understandably worried about her future as a mother of a special needs child, and the effect this diagnosis will have on family dynamics with her other child. She asked me how it felt to grow up in the shadow of a CdLS brother.

What's amazing to me is that I don't know that I had ever really thought of how it felt. Like I said, it was all I knew. But looking back, I realize that it did not adversely affect me, at least not on the whole (just don't ask me to tell you about the time Daniel sat behind me in Primary and made me cry by poking pushpins into my back). I think I had a positive experience as a CdLS sibling for two reasons:

1. My personality. Where it gets tricky is when I try to discern whether my personality was innately particularly well adapted to dealing with a high-needs older brother, or if my personality developed the way it did to cope with said situation. It's anyone's guess, really. In any case, I didn't seem to mind being hauled around with my mom and brother to doctor appointments and special schools. In fact, I believe I learned to read in the library at one of those special needs schools.

2. My mom. I don't know how she did it, but she managed to not let Daniel's problems cast a shadow over the rest of our family. Our world did not revolve around his disability, even though I knew that it cost her a lot of time and effort to fight for every victory she achieved on his behalf, like getting him through high school in the public school system. I think it would have been easier for her to say the rest of us kids couldn't do this or that because of Daniel and his situation, but I can't recall a time that she ever took that out.

I do think that Daniel and I had a more turbulent brother/sister relationship than normal. For most of my childhood, Daniel seemed to hate and resent me, and it was sometimes hard to flourish in that atmosphere. It was the weirdest thing, though - in 1995, when our family dog ran into the street and got hit by a car, and Daniel saw me crying about it, he was nice to me for an entire year. To this day, I have no explanation for that fluke year of peace in our relationship, but whatever. After that, we went back to our uneasy semi-truce. It is a fact that even when I drove to high school, Daniel refused to ride in my car and took the bus instead.

Anyway, all of this is to say that Daniel goes to a retreat house for disabled adults every once in a while. It's called Martha's Place, and they just put out a new video describing their services. My mom and Daniel are featured in it a few times. It's worth a watch for that reason, and also because these are good people providing an awesome service to families of special needs children who are now grown. Take a look.

10 comments:

Crys said...

Bridget this is really interesting! I've been thinking about birth order a lot lately. I wonder if Daniel just magnifies what all oldest children feel when a younger sibling is born but because of his disability he doesn't hide it the way the rest of us do. Sorry younger sister :) Also this isn't nearly the same thing but I have been thinking about how Cheetah's birth and needs affect everyone else. Thanks for sharing. Living waters looks awesome and your mom looks so young, how is it possible that she has adult children :)

Craig said...

Daniel prefers to stay with his routine, which might be why he chose to still ride the bus when you drove to school. Despite the obvious rough edges, Daniel has a heart of gold. I recall he went shopping on his own and bought you and Jeremy wedding gifts prior to your leaving for Russia.

Bridget said...

I guess I'm talking about growing up years, not adult years, in this post. Yes, Daniel and I did mellow out after I left the house and he is always sneaking special gifts into our luggage when we come visit. He usually makes dedicated trips to Fred Meyer to do it and he even includes things for the girls.

The hard thing about him not accepting rides in HS was that friends and onlookers thought I was so cruel to not give my brother a ride to school...

Jeremy Palmer said...

That program seems really great. Daniel is awesome! I love it when he tells me family secrets...

Jennifer said...

That's a great video--your mom does look great. :) Michelle attends the day program once a week there and I know it really helps my mom out. I was amazed how many of the participants I recognized from high school and other things I did with Michelle.

Interesting that we both have a disabled sibling, yet I don't feel like we ever talked about it all that much...

Suzanne Bubnash said...

Yeah Jeremy. Just discount everything he says!

I have a lot to say on the subject of this post. Will write it separately.

Kathy Haynie said...

I'm glad you wrote this post. For lots of reasons. Thank you for sharing about your brother and your family.

Bridget said...

Jennifer, I was hoping you would read this post, because I thought about you as I wrote it. I'd be interested to hear your thoughts on being the older sibling in this situation.

Liz Johnson said...

This is a really interesting post, and a really wonderful video. I love that services like that exist in the world.

Jennifer said...

I've been meaning to get back and comment since last week. Sorry!

I feel like my relationship with Michelle is totally different than your relationship with Daniel. For years, I was Michelle's favorite sister (I feel like Melissa has become her favorite in recent years since I got married, had kids, and don't have as much time to spend with her when I'm visiting. And I'm totally ok with that.) She would do things for me that she wouldn't cooperate and do for anyone else. She makes sure that we have some sister time whenever I visit. We still have traditions that we follow (like baking cookies together) that we've been doing since we were kids.

Growing up, helping to take care of Michelle was part of life. And as an older sibling it was somewhat natural to babysit her and play with her. I really enjoyed being with her and playing with her when we were little. And I still do, of course.

Michelle has always had a really good relationship with all her sisters. Thankfully Melissa was enough years younger than Michelle to graduate from high school the year after Michelle graduated at 21 years old, so she didn't feel taken over by her younger sister in that way.

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