Being Uncomfortable

Some news in our world is that my brother Erik, who is developmentally disabled, is living in his own house. Well, a group home with one or two other guys like him that is staffed at all times. During the day he works. His life is full in a way I was never sure it would be. He's 35 and for the first time he's living away from my parents. It's kind of a big deal.

I know that the transition has been hard on all of us, especially my parents, especially my mom. I suppose it's been the hardest on Erik. It's been almost a year and I still do not love the feeling I have when I drive away after visiting his house, or the feeling I get when he calls upset about something. While I know he is happy in his life, I also know that he is mourning the loss of his old life. Even though he craved independence he also found it comfortable to know he was always going to be cared for in a certain way. Living on his own, even with caregivers, adds an element of the unknown.

We each attempt to make him comfortable, to put him at ease about his new life while also trying to do the same for ourselves. We have dinner with him at his house. We have helped him decorate his room. We talk on the phone every day, sometimes too many times in a day.  He is in some ways so like a child and in other ways like a grumpy old man. It's an interesting and maddening mix of sweet and sour.

Part of the conundrum of Erik is that he experiences feelings on a really large level (probably super sized) yet is unable to articulate much of that. That inability leads to a lot of unnamed frustration that looks like acting out. Think 6 year old behavior in a 35 year old man. Honestly, though, there are times I listen to him ranting about something that he's ticked about and I think, "Yeah! That's right."

It's amazing how quickly something new becomes ordinary, how quickly old dreams are replaced with new ones. I had always hoped that Erik would come live with my family but that was just not possible. That doesn't mean that won't ever happen, it just cannot happen now. I've come to see that he needs to be where he is, that this step is important in his life. It's sure not easy, though.

Finding notes like this in my day planner make it hard to not go pack him up and bring him home:



 

Translation:

I love you Kara! I would like to move in with you and your family! Love, Uncle Erik  God bless you all!

 

I cannot give him false hope, though, and tell him that he can move in with us even though that's what I want to do. I don't know what the future holds for him just like I don't know what the future holds for me and my family. Ten years ago, when Erik was 25 and I was 32 we used to plan our future together. Erik would worry about what would happen to him when our parents were gone to 'Glory-land' as he refers to heaven. I just wanted to make him feel better so I drove him to Home Depot and told him to pick out a yard barn. I told him that yard barn would be his house and we planned how we'd convert it to an apartment. This calmed him and excited him. The idea of having his own space right in our backyard was the perfect solution to the dilemma.

We're both older now, though, and I know that sometimes making him feel better in the short term isn't great for him in the long term. When Erik brings up moving back home I remind him that he likes his new house, that things are good there. I ask him to list all the things he likes about his house and living on his own. Fortunately there's a lot he likes.

I wish I could convey to him all that I know about moving; that it takes time before a place feels like home, that soon the new things will be the old things and that will feel right.  I wish he knew that being uncomfortable is just part of the process of growing.

Dreaming of the future isn't bad as long as it doesn't keep you from enjoying where you're at. That's the balance that's hard to strike, isn't it? We each have to work to be grateful for where we're at yet not let go of the possibilities that could come down the road.

Last week when I was hanging out at Erik's house he said something to me that gave me hope that he's pleased with his life as it is.

"My jobs are important, aren't they?" Erik asked with his cute grin, bending at the waist expectantly.

"Yes, Erik, your jobs are very important," I answered. Then I gave him a big hug. This is what we want: for Erik to be satisfied with where he's at, to enjoy the fullness of life.

As I was getting ready to leave later he asked another question, though, that reminded me that he's always dreaming of the future.

"I get to move in with you all again one day though? And we'll live on a farm?"

"We'll see, Erik. We'll see." I smiled over Erik's shoulder at his caregiver.

Erik will never give up on that dream.

So I guess I won't either.