Wednesday, August 21, 2013


Oh, how I love respite.

As Finleigh excitedly dons her backpack, ready for her next adventure, I can feel the tension in my body start to fade. 

I can send her out with someone that I can trust. Knowing that she can handle all that Finleigh can throw at her. And they have so much fun.

And then I get lovely little pictures on my phone.

But the thing about respite, is that it's just another person, who has a life outside of my troubles, coming to help. Yes, she gets paid. But her life is important too. She has things that come up. Like deaths in the family, sick pets, getting sick herself. And then the plans that I had for the day. The excitement that Finleigh had about going out to do something fun. Well... that has to change.

And while I'm a pretty flexible person, too much last minute change stresses me out. And then I start to feel like I can't depend on respite anymore. Which makes it feel a little less helpful.

The new line is... well... we might have respite tomorrow. We'll see. She'll probably come.

Finleigh calls her "my girlfriend." And she loves to drive around in "her cute, little car." It's all great fun.

Until she doesn't come.

But still, I'm terribly grateful for the help. The chance that the rest of us have to relax just a bit. The boys can do things without being concerned that their sister will suddenly show up and wreck it somehow. And my husband and I can concentrate on something for more than a few minutes. We took the boys out to a restaurant a while ago... it was incredibly relaxing. I got to sit beside Brian and everything. And there was no device at the table to keep a little one still.

And really, it's respite for Finleigh too for you see, she was born into a family of introverts. Nerdy introverts even, who would happily sit and read books all day or play Minecraft. And as much as we love to spend time with her, her need for one on one attention tires us out. So, a fresh person who comes in and loves her and pays attention to her and takes her on great adventures is so good for her.

So, the phone message we got the other day from the agency that provides our respite telling us that our worker had resigned and they had no one to replace her was a bit of a blow. I walked around in tears. Disappointed for myself. Feeling a little hurt that we were only a job to her. That relationship we were building... gone.

And then, the more I thought about it, the more upset I was for Finleigh. Her girlfriend is gone and she didn't even say goodbye. What do I do with that? She doesn't understand.

And what does that say about the future? How many people will float in and out of her life? People she will love without reserve. People she will become attached to. People she will then lose.

I guess that's part of the life of a special needs family... depending on others who see you as a job. Paid to help you and that can leave at anytime.

At the very least, we've learned a few things. We know how to approach our next worker when (if?) one becomes available. We know what we don't want to have happen. We know what to watch for. We know to keep our guard up just a little bit more.

I just wish we could teach Finleigh to do the same.

1 comment:

  1. well that sucks.

    We don't have an agency so any respite we get comes from people we know in real life already and ask. So they have a much harder time disappearing.

    I hope you get a new worker soon xox