My fear has come

Just a pre-cursor: Serious and vulnerable post.

I’ve really only had 2 major, feeling-feint fears most of my life. One – I will never talk about.

But the other is losing my brother, Hulkman.

Most of you know about my twin – born 5 years before me. Hulkman is my brother who has Down Syndrome. I’ve written about him from time to time. He is my first pride and joy.

We always knew Hulkman would never live super long. Most people with DS don’t live past their 40’s. Hulkman is 41. I knew of one man that made it to 56, but that is rare. Their heart just can’t keep up.

Lately Hulkman has been having some heart issues. So he’s had an echocardiogram, some heart recording thing that he wore for a few weeks, and on Wednesday he went in for a transesophageal echocardiogram (where they go down the throat to sonogram the heart beat). They weren’t able to do that due to his incredibly narrow esophagus. He just hasn’t quite been himself lately.

He’s tired a lot. He gets this look that we’re familiar with. We saw it when he was 17 and almost died in India. Hulkman can be such a drama-mama when it comes to medical things, but lately he’s been more scared that dramatic.

I think it’s only a matter of time now before Hulkman passes on. I don’t do well with death and I can’t imagine what it will be like when he does die. I always thought I’d be a good Indian woman and pull at my clothes and scream and wail, but then I know when he dies he’ll finally get to see Jesus and he won’t have DS anymore. I would LOVE to see him when that happens…

This post is not put together right but there’s just no easy way to write it. I’m kind of hoping by putting my thoughts down on paper, Murphey (from Murphey’s Law) will step in and tomorrow Hulkman will be back to his old self; acting out his favorite movies, preaching fire and brimstone to his books, and asking why mum can’t fix his mashed potatoes for lunch everyday. I’d love to feel silly for writing this…

He could use any prayers you guys can give. I really don’t want to write a post about the day I lost him to heaven.

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13 Comments

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  • Regardless of what happens you won’t regret writing this. You also won’t regret jotting down any number of memories you have of the innumerable ways he has blessed your life.
    Death never makes sense to us because we are on the wrong side of it. I don’t have to tell you that Hulkman is a tremendously special gift.
    If you need anything I’m a phone call and/or a hop skip and a jump away. And, it is my honor to pray for a man that preaches fire and brimstone!!
    I think you are into hugs about as much as I am, but …
    (((HUGS)))

  • {{{Jen}}} I absolutely will pray for him and for you too. No doubt the world is definitely a better place for having Hulkman in it. Heaven will benefit as well. But, for your family’s sake, I hope that’s not in the near future.

    It’s a very real scare. Murphey, you can step in now!

    Please keep us updated. I feel confident in saying that all your readers care.

  • ((((((((((Jen and Hulkman))))))))) You both are such beautiful human beings, and your love for each other shines through whenever you talk about him. Both of you are in my thoughts and prayers.

  • :-(

    I certainly can’t imagine what it took for you to write those words down–captured forever in writing and not in the safe recesses of your deepest soul. Thanks for sharing your burden so we can share it and bear it with you.

    We love you and will keep you and your brother in our prayers.

    –Ninker (out of lurking-stage for once…)

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