An Open Letter to Death

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Dear Death,

Well, that was really something you did, taking out a 3 year old girl. By everyone’s account, she was sweet, adoring, and perfect. She could have been the poster child for Life itself. And her family… I barely know them, but I know they deserved more time. They are the best kind of people; the kind that pour themselves out for their neighbors, and who define their neighbors liberally. Instead of a reward, their little girl got a brain tumor, and now she is gone.

There were thousands of people storming the heavens for a better outcome. Is that why you persisted? Were you sticking your finger in the eyes of the faithful?

I know, I know, this is nothing new. Please don’t give me your résumé. I am all too aware that you take children every day. Some of my dearest friends have lost sons and daughters on the very day of delivery. Their tears poured out in buckets while their nurseries stayed empty.

And at that, I can almost hear your taunt: “Why are you still surprised at my coming? I am the only inevitability of life, and yet you persist in your impotent weeping!”

It’s true. Your coming still shocks and paralyzes us.

Mourning ought to be easy by now, but it is not. We wail, we wretch, and we swear. Then we retreat to a safe place until we can breath deeply. When we emerge, many of us do so with duct taped masks of composure and strength. Those masks, over time, might even become real. We can, in our weakness, become wiser and softer and stronger all at the same time.

Yes, Death, I am admitting the truth: we can learn from you, and we often do. We learn how to press forward. We learn the scent of sacred moments. We discover what it means to really embrace one another. Softness and gratitude–both treasures of the dark–become ours.

Perhaps this is why the Egyptians of old praised you so. They knew the little glances of good that came after your touch, so they celebrated you with myths and monuments. In doing so, they became your vassals.

But I will do no such thing.

I will not treat you as a lord but as a foreign brigand who drags the innocents away in the dead of night. For that is all you are. You were never made for this world. You are an invader. You haunt us with your inescapable shadows–tales of victories over every King and Pharaoh, every soldier who dared tempt you, and every soul who hid to avoid you. You eventually defeated them all.

Except for One.

Yes, Death. I remember your single humiliation: two thousand years ago by the Man on the tree. So you see, you are not so inevitable after all.

What’s more? This age will not last forever. That same Man will return to put an end to your dominance. His victory will belong even to the least of these. The children of the world will stand over you and laugh.

Until that day, we will not shrug at the sight of you, nor become accustom to your touch. Not ever.

This is our act of defiance: we will not call you “normal.”

Instead, we will continue our stubborn fight. When our fathers die and our children fly with angels, we will weep for them, and taste the wrongness of our separation. We will pour out our foreign grief like drink offerings to your Conqueror, the One who promised,

“Blessed are those who mourn, for they shall be comforted.”

– J. Hague

The Big Sister Speaks! (A Guest Post)

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I haven’t had any guest posts here before, but what better time to start? My daughter Emily (the one on the left) is eleven, going on twenty-three. I wrote about her and her sister earlier this year, but she topped me with this, which she wrote for school last week. I couldn’t be prouder. It’s worth noting that we didn’t help her on this, except to clean up a few details in her timeline, and fix some minor punctuation. This is all her. And the best part is, she really lives it. Her sister does, too. I’m thinking more and more that the siblings of special needs kids are some of the most amazing people on the planet. -jh

Don’t Judge a Boy by his Diagnosis

By Emily Hague

It was June 2009, and it was that crazy year that my life changed forever. My little brother Jack was three, and I was eight. Everything seemed perfect. School was out, and my friends and I were playing every minute we could together. All of that changed when one day, when mom and dad called me and my little sister, Jenna, inside early. I had no idea that what I would learn would turn my whole world upside down.
     
I remember thinking how frustrating it was that my friends and I were right in the middle of making a perfectly good fairy house when mom and dad had to come in and ruined all the fun! Mom set the stirring spoon down next to the stove and sat down in a chair as Dad opened the door for us and sat us down on the couch. I can’t tell you exactly what was said, mainly because I can’t remember, but it went something like this: “Girls,” my dad said, “things are going to be a little different from now on.” “How so?”I grumbled. I didn’t want anything to change. “Well,” my dad said, “Mom and I, just found out that Jack has autism.” I was about to ask what autism was, when Jenna beat me to it.”What’s Autism?” I think Mom and dad had a hard time explaining this to us since Jenna was only seven and I was eight. They did their best to explain but I still didn’t understand for quite a while. All I knew was that Jack couldn’t think like we did, and that was good enough for me.
 
Three days later we moved to rainy, cold Oregon, and there Jack started going to a school called a Child’s Garden that specialized with kids with autism. I saw him slowly learn and grow, and it became obvious that he wasn’t quite like other children his age. He liked to wander off by himself. He didn’t look you in the eye, and he couldn’t talk. One morning we were excited to show mom and dad that we had taught Jack how to say “Please,” but when we told him to say it the next day, he looked at us as if to say “What are you talking about?” His mind had lost the words again. 

Suddenly it all fit together in my mind. Autism made it hard to communicate with Jack because he couldn’t talk or understand everything. It was like he was trapped in his own world. I asked Dad why Jack would stare out the window and not look us in the eyes. And he said, “He sees things differently than we do.” Little things like a light or a sound that wouldn’t bother me at all, would drive him crazy. When he pulls away into his own little world, that means he can’t cope with the light, or the sound, or whatever else is bothering him. Even now, Jack has a tendency to get attached to random things that we see as every day items (we’re not sure why), such as a certain shirt, or a spatula, or a bean can. If you take one of these things out of the equation, you get a fit.

So eventually we each developed a special way to communicate and connect with him. My personal way was and is to talk directly to him, play directly with him, not act like we’re talking to somebody from another planet. He’s a kid too. We play tickle tag throughout the house, go on walks to the park, and play games on the iPad together, just like normal siblings. Because we are normal siblings.
 

Over the years I’ve seen people look at him in his state of being as if to say,”What the heck?” And I know that they could never really understand who Jack is. As Jack’s sister, I’ve learned not to look at Jack’s outward appearance. I’ve also learned that you need to take time to understand somebody before you form an opinion about them, otherwise you could be making a big mistake. So the old saying’s true: “Never judge a book by its cover.” But in Jack’s case, I say, “Don’t judge a boy by his diagnosis.” I love Jack, Autism and all. He brings joy to my life every day, and I can’t imagine life without him.