Perfect

I have this great kid.



He is so cute (though don’t tell him I said that; he hates being called cute). He says the funniest things; I have about a hundred videos of him that we all watch again and again because they warm my heart and make me smile on my bluest days.

His gift is going to be music. Michael found a first-generation iPod that we loaded up with music for him; he loves to sing and play instruments, write songs.

He’s so very kind-hearted. When his sister gets in trouble, he will come in shaking head to foot telling us to leave his sister alone. If she loses out on tablet time, he offers to give her some of his.

My Ben is a constant, overflowing cup of joy, and by far and away, my biggest and most steady source of guilt.

It’s usually this….sort of uncomfortable humming running in the background. Like the sound of the air conditioner unit—every now and then, it’ll kick on and make itself known with a lot of racket. After awhile, I acclimate and stop hearing and feeling it so acutely, and it’ll flip off for a bit to flare up again later.

My Ben is perfect, you see. He’s so good and kind and sweet and funny. There is absolutely nothing wrong with him.

Not autism.

Not diabetes.

...nothing.

There is such a dearth of available resource in this house—there isn’t enough time in the day, enough space, enough peace, enough quiet. Our lives are bursting at the seams as it is, trying to hold all our wants and our needs and hopes and our dreams inside that there isn’t room to move or breathe, crushing us from all sides. The very rarest and most precious of gems though is parental attention.

When we are particularly tired or drained, Michael and I will half-heartedly snip and snarl at each other, cyclical arguments that go nowhere and mean nothing, saying the exact same thing: Please notice me.

So when confronted when a gaggle of siblings, each with needs so much louder than his own, how does Ben fit in?

At meal time, when we are handling cooking and finger pokes and two separate insulin calculations and making plates with exact portions and it’s too much and too loud, Gabe is stealing fistfuls of food off his his brother’s plate...it is easier in the moment to tell Ben to fussing about it.

When Gabriel knocks all the books off the shelf and tears up packs of diapers and dumps buckets of toys, he retains unlimited access to screen time because it’s his communication device. Ben is sent to bed early without tablet time because his room isn’t clean.

His diet is the same as his sisters to make it easier. He surrenders his candy at holidays, just like they do, and is punished when he is caught sneaking it.

All day long, he is told to go to his room, go play, go on now. He sometimes asks for special time—going out with Daddy or watching Star Trek with Mommy. Usually, he gets a tired and vague noncommittal “sure, someday, buddy.” If I’m feeling particularly harassed, I snap out of guilt. I’ve let him down so many times, he doesn’t ask much anymore.

I have tried researching it. There isn’t much data regarding siblings of special needs kids. Everyone is so busy studying the subject that we are only getting glimpses of the familial ripple effects. Some constants have been observed though:

Anxiety.
Depression.
Acting out.
Feeling like they can’t express their feelings.
Need to be perfect.
Loneliness.

At the bottom of the article, there’s usually a short blurb about possible coping strategies. Enroll them in a support group (though be advised sibling support groups are very few and far between). Set aside time for each of your children every day. Treat all the children the same. Godspeed and good luck.

The lack of attention causes mishaps along the way. It takes so much effort and focus on our part to keep the other three alive and safe that Ben sometimes falls through the cracks, and we end up in ICU because he drank nighttime medicine. Most of the time is a quieter turmoil than that: a knocked over dresser, an upended bottle of dish soap, a busted window.

No one chooses to be born into this life; no one picks the hand they are dealt. This is the path we are on and I can either keep making excuses, or I can find a way to be better. God help me, I don’t know how. I feel like a tube of toothpaste—wound so tight, keep squeezing to get more and more out, but I don’t know how much more I have left to give. Michael, I know from our pissy bickering, is in no better shape than I am.

This has been a hurt my heart has carried for a long time. Ben has never known another way. When he was born, Gabriel had just been diagnosed. He wasn’t even two when Emerald wound up in the hospital. Our particular brand of chaos is how life has always been for him. After all these years, I still don’t know how to fix this hurt he was born into, a hurt I created.

Until now, where we have this beautiful, delightful six-year old that struggles with self-worth, crippling loneliness, and fear and uncertainty. He has trouble making friends or knowing how to play because his siblings don’t engage him. Like sisters do, his calls him annoying and a brat, that he does everything wrong, yells at him to go away. His feelings are displaced because Gabe’s developmental needs are so great that there often isn’t room for anything else. “Gabe doesn’t know any better” is an all purpose band-aid slapped on every situation.

Even his mom doesn’t have time for him.

When I am scraping the very dregs of my reserves and coming up completely empty, we are all walking away hungering for something more. I’m just not it. I’m not enough on my own.

But I’m all we’ve got; I’ve got to be enough. I have to find it in me to be enough. If there wasn’t enough food to go around, I wouldn’t accept that someone would just go without. We have dealt with too little for too long. Now I have to figure out how to be more. If I have to MacGyver this situation using the scraps and trash of what I have left, then that’s what I’ll do.

Mom pushed me to sign Benjamin up for little league. Against my hesitation of adding anything else to our already overflowing plate, I did it. It is a very small something, but it is a start. What is that Helen Keller quote?

“I am only one, but I am still one. I cannot do everything, but still I can do something. And because I cannot do everything I will not refuse to do the something that I can do.”

I am only one. But I am still one. For my Ben, I will find a way.

—Andie