2/02/2013

Laying Heavily On my Heart

A few months ago, Bobby and I sat down and filmed a conversation about guardianship. The paperwork has been sitting by my chair since then for this year's renewal.

I hate this paperwork. In the couple months preceding the due date for filing it, it hangs there, this feeling of heartache, growing steadily with each passing day, until the inevitable day when I can no longer ignore the paperwork (not that I'm ignoring it--I see it, feel it, know it is there).

Today is that day. It needs to be done, and it is solely my job to do. I have filled it out so many times and each time, Rick does the final part of it, filing it. I've never asked him if it hits him as hard as it does me. Maybe the actual filing of it, the finality of it, maybe that it hurts more, that it pierces the heart more deeply. I don't know. All I know is that court when he was 18 was enough. Going to Social Security when he was 19 and applying for SSI was enough. Filling out all the paperwork each year for both the court and SSI is all I can do. Don't ask me to walk into the courthouse and file it. Please.

And so, each year, Rick and I do this dance, and we don't talk about it. Don't share the ache.

Everything we said in the video is real, is how we view it, and we're as pragmatic as possible about this as we can be. Bobby is wonderful and I love him completely. He has no idea that this process hurts me. He shouldn't. But it still, even as we work together to make a good, satisfying life for him, hurts me to fill out paperwork that clearly focuses not on that good life, not on all his wonderful qualities, but his "deficits."

That never gets easier. I kept expecting it to get easier. Instead, each year, each time I am forced to focus on what he can't do, what he needs help on, the more it hurts.

I used to wonder why Rick never discloses the kids' autism when he takes them to an appointment, but I figured it out. Too many times, when you disclose that information, the person told changes the way he treats one of the kids, ceases to see Bobby as an adult man and turns to me. Ask him. Even if he can't answer, even if I have to help, ask him. He's right there in front of you, so ask him.You would think the person could feel that intensity, that wave of emotion flowing off of me. But no.

What I appreciate most about Meals on Wheels, and for the couple years Bobby was at Rescue the Animals, is that the people in those places treated and treat him like the wonderful young man he is: they see Bobby. Not "deficits."

Most of the time, almost 99 percent of the time, I get to see just Bobby. Sure, we know that there are things he can't do, but in the environment we've created, that's not an issue. Sure, we groan at times when he gets unfocused, but it's Bobby. That's what he does, and we create time for him to have that unfocused time.

I'll finish this post. And I'll shut the computer. I'll take the pen, and I'll fill out the damned paperwork while my heart cracks in two because that is what it does, damn-it  whether I like it or not. And I will cry my tears, not because I pity myself or my bright boy who has become such a bright, shining man, but because that paperwork doesn't let him shine. There ought to be a place, as we speak honestly about the assistance required, to also fill in how he shines, how beautiful a soul he is, what a sweet, warm and loving man he is.

There ought to be and there's not and that is what breaks my heart. Not who my son is, not how differently his life is than what I expected. He has a great life. He spends his time doing what he can to help people, to make lives better with his contributions and he does it joyfully each and every day. I could not ask for a better son, a finer character, than him.

He is my heart. So I can cry, and I can fill out this damned paperwork because this is what he needs me to do. But I'm telling all of you, since there is no room for it, no place for it, in the damned paperwork, that this son of mine is a joy, a delight, an amazing surprise each and every day.


any chance to take a pic of a cat--
where oh where do they get that from?
said photogenic cats

always helping--
folding laundry

The paperwork and the process may lay heavily on my heart, but my bright boy never does. He lights my way.











4 comments:

Mel said...

I shared your post because I found it worth sharing and keeping in mind. blessings to you and your beautiful boy.

K Wombles said...

Thank you, Mel. I appreciate it.

Ari said...

He likes kayaking? Also do. Can not by self though. (Yet.)

Sorry. Unrelated. Saw kayak picture. Miss it during wintertime.

K Wombles said...

Ari, no need to be sorry. Yes, he started a couple years ago--my dad takes him out. We were thrilled that he could enjoy kayaking.