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Again

August 5, 2007

I adore my brother. Adore. In the sense of think highly of, think of often, would give my left arm to help him in any way I can. Adore.

He was born 8 weeks early and slept, for the first few months of his life, in my doll crib. Lots of black hair and the biggest brown eyes you could imagine. He’s six years younger than me and I was absolutely thrilled to have a little brother.

He has always been “active”. That’s code for Non Stop Action. I remember when he was 5 he would run with his head looking back at the “smoke” he created in the dirt. Better sneakers made him run faster, you know. Then he discovered BMX bikes and would ride for hours and hours. He never got tired it seemed. In Junior High he discovered soccer and while he wouldn’t have been good enough to go pro he most definitely excelled in the environments where he would play. When he finally got his own car he drove fast and wrecked often. Never a scratch, just higher insurance.

Somehow it was always someone else’s fault.

Baby brothers, sheesh!

When he was 19 we found out he had MS. Multiple Sclerosis. At least that is what the doctor’s named the mystery ailment that made him incoherent, slur his speech and not be able to control his motor functions very well. We’ve tried, as much as he’ll let us, to support and encourage him as he’s walked through some very difficult times. Trying to cope with new limitations that a 20 something young man shouldn’t have to think about. It’s not fair. It’s not ok. And yet, somehow, I have to believe G-d has a blessing hidden and available in all of this. Somewhere. Especially when I can’t see it.

A month ago his son was born. Little Reuben is beautiful and perfect. I saw my little brother all over again in his dark eyes and fuzzy black hair. I can almost picture Reuben running down the lane in white sneakers looking at the dust behind him.

What I wasn’t prepared to see, yesterday when I saw my brother and his wife, was stiff legs, severely limited mobility and the shuffling gait of an old man. i didn’t know how to interact with slurred speech and fragmented conversation.

I can’t fathom the pain and disappointment a young, first time father would be experiencing knowing he can’t carry his own son because he, the father, falls and cannot help himself. I am struggling to come to terms with how the sparkle, laughter and almost spastic energy of my brilliant little brother has not only dimmed but has become practically non-existent.

I adore my brother. Without reservation. I adore all my siblings and think they are the most amazing people I’ve ever known. As we’ve grown older and moved out into our respective lives I’m constantly inspired by them. But there has been a price. Twenty-two years ago we lost Joel to paranoid schizophrenia.

Yesterday I realized we might be losing Matt to MS.

Today I’m praying as hard as I can for G-d to grant mercy and compassion to them, wisdom and grace to me and strength for all of us as we try to come to terms with our new normal.

Yet, in my heart of hearts, all I can think is how unkind life is, how unfair circumstances can be and how much I wish I could fix this for him, give him his energy back. Just to see him running down the road one more time. Boundless energy, laughter echoing off the walls and a twinkle in his eyes.

I know it’s selfish. I know there’s a part of me that wants my pain alleviated as much as I want his to be assuaged.

It’s infuriating to know I’m powerless to help. I’m too far away to assist. We are too distant in relationship to bear the burden with him.

So I pray. And wait. And hope.

Again.