Friday, April 9, 2010

The Pioneer Woman's brother Mike and my brother Matt


Fantabulous blogger The Pioneer Woman has been telling stories about her brother with Downs Syndrome. I love how she tells the stories honestly, not brushing over the weird or awkward moments. That results in stories that are humorous, tender, and real.

Sometimes PW's brother Mike sounds a lot like my brother, sometimes not. My brother's quirks do not include moments of rage (however, Mike's choice angry insults are HI-larious... like.. "turkey damn butt!!" - I highly recommend you follow the link and read the stories! ).

Ree says things that deeply resonate with me, like this:

Mike, at age 42, despite innumerable intellectual and physical challenges, enjoys a life chock full of independence, friendships, and activity. He has his own apartment, can cook himself Ramen noodles like no one’s business, and has a network of blessed souls in our hometown who willingly drive Mike from point A to point B several times a week whether they particularly feel like it or not. Aside from this angelic circle of friends Mike has carved out for himself, I largely credit my parents for the heights to which Mike has climbed over the course of his life; instead of emphasizing and highlighting Mike’s handicaps, they simply threw him into the mix with the rest of us numskulls in the family. And though they regularly availed themselves of the help and resources they needed to assist Mike in his handicap through the years, most of the time Mike was just another one of the kids.
 At this point, we don't know what my brother, who is now 15, will be doing in 20 or 30 years. How much independence will he be able to have? Who will be caring for him? How will his community treat him? Those things are scary to me, much scarier than adjusting to the adorable little bundle he was when he entered our family. My family is like this family - Matt was thrown into the mix with five older siblings, and that constant stimulation probably strongly helped his development. But what now? When he's sixteen, the last sibling leaves home for college.

This past year and a half Matt's dealt with things we never thought he'd have to deal with, things I can't talk about in this very public blog-world. He's a champ - processing through things and growing despite the immense difficulty and, yes, suffering.

It's interesting. You know, when I was a kid and Matt was a baby, I didn't know how to react when people would talk about disabilities being taken away in heaven. I can't imagine Matt without Downs Syndrome, and it seemed like while Matt was different, having Downs Syndrome wasn't BAD, so why would it need to be taken away? Now, in the teen years, I feel more of the ache of.... this is not how it was meant to be. Matt now knows he's different, he fights against his own limitations and grows frustrated, and I ache for him in those moments, though I love him exactly as he is.

Watching Matt is a constant lesson in what beauty and redemption really mean - sometimes in the midst of the limitation and frustration, we are treated to the beauty of what can be done and what is beautiful despite the fact that this is not how it was meant to be. Matt is beautiful, in the true sense of what beauty is. Life isn't easy for him, or for my parents as they struggle to know how to raise and equip and protect and teach him. Yet that beauty is right there in the midst of the difficulty.


Jaimie said...

I was simultaneously laughing and tearing up during part of this.

PS. Did you read that link I gave you a while back about that mother with a Downs baby? Dude. I had to unsubscribe to her. After a while, it was so whiny. And it dawned on me a few days later. I kept thinking, "One day her daughter is gonna read how her mom just HATED giving birth to her." What the crap?

I don't know, it was just celebrating the baser parts of this woman's life. When someone has a crap attitude, we're not usually so celebratory... so why is everyone pandering?

Eh, just hit me wrong after a while. I'm wondering if it did you too, since I never heard your reaction to it.

CM said...

That picture of the two of you on your wedding day is so sweet!

Alysa said...

wow, Kace. Love this post. Love Matt. He is an amazing boy, turning into a young man. Beautiful post.

Alice said...

This is a great post. I have long loved PW's posts about her brother Mike; they are so hilarious. My favorite is when he went with her husband to the rodeo--I was just crying/laughing.

I too love the picture of you and Matt at your wedding.

You're a good sister. :-)

justaweeblether said...

I have had almost zero time to keep up with blogs so I didn't get a chance to read yours yet, but I just want to say what a great picture of you and Matt. I actually said, "AWW!" outloud. :)

Togenberg said...

I love the picture's of your bro. Thinking of him and praying for him.

Vath3000 said...

have to disagree with Jaimie, i found the blog in question very helpful. there are a whole gamut of a emotions when a mother has a child with Down Syndrome. I too went through this process 9 months ago. I don't ask for pity or even sympathy and I have nothing but love for my son. It was all very new for me 9 months ago, but I can say now I am glad I went through it. I found the fact that the images and the birth story reflected a lot of what I went through, and like it or not- what a lot of people go through. I have no doubt that my son will go through a lot of issues but the initial shock of having him will not be one of them.

Kacie said...

Vath3000, Jaimie actually pointed me to that blog because of the posts about the birth, which do reflect the powerful mixed emotions after the birth of a baby with Downs Syndrome, like my own parents experienced after my brother was born.

Sticking with the blog is harder, though, because she expresses the same emotions going forward. I haven't read it in ages, and I can't blame her for her emotions, but because I also see it through the eyes of the child, or perhaps in defense of the child, I sometimes find it frustrating when it feels like instead of really emphasizing the love and commitment to this particular baby, the angst and pain are emphasized.