Joey and His Big Brother

Joey and his big brother Tim are 27 months apart. They are 19 and 21 years old. Young Tim says that he did not notice the extraordinary amount of care that Joey required when they were little, but as they became older, he remembers that we were too tired to take him places and do things with him. Ouch. He was glad when he became older and he and his friends were allowed to drive.

But on a much happier note, it was surprising to hear that Tim never suddenly realized that Joey was different. As we struggled, not only with Joey, but with a couple of other huge things that wore us down, Tim’s continues to say, “Joey was just Joey and it never bothered me.” He may have become angry with us at times, but was not embarrassed or ashamed of his brother!

Young Tim has always gone along with what Joey wanted to do, which has been limited and pretty much the same throughout their lives.

When Joey was under a year old and young Tim under 3 they would chase each other back and forth around the hallway, turning the corner and back into the playroom. Young Tim would crawl to chase Joey, then they would “about-face” and Joey would chase. They made a lot of noise before each “about-face” and there was constant laughter!

He still teases Joey with silly talk by saying “Cold water in Tim’s room?” The “cold water” reminds Joey of when, as Tim would help us by giving Joey a bath, he would surprise Joey by filling up a cup with colder water and pouring it on him. The “Tim’s room” part reminds Joey of when his brother would be looking after him and brought him downstairs while he did his homework. Joey was bored. So, the combination of the two brought Joey to exclaim “NO?”

Another favorite question that young Tim still asks, “as I get in his face” is “Time to go potty?” Another resounding “NO?!”

I am very proud of Tim for paying more attention to Joey’s behavior than to the looks of strangers. To this day, he does not remember other peoples’ reactions while he was helping me with Joey. Fortunately, those times were few.

“Joey responds more when I am physical with him…. When I speak to him I have to get directly in his face.” “There is not a lot to do with Joey. We say the same things over and over. He likes it when I help him with the computer or when I talk about his favorite movies or say words using the wrong vowels. He is like having a much younger brother.”

I remember the look of pride in young Tim’s face when Joey was 18 and guardianship was established. Tim will be Joey’s guardian when we are too old to be. When we were finished, young Tim approached Joey, put his arm around him, then walked him out, face right up to Joey’s face, talking to him. It brought tears to my eyes. This is how it should be, I thought.

Young Tim remembers taking Joey to high school for the first time. “Joey was clinging to me and did not want to let go as I brought him to the aide in the special ed. department, but the next day he was OK.”

My favorite recollection from young Tim was, “I did not see him much around high school but when I saw him in the hallway, I would say ‘hi’ and punch him in the stomach.” Now, that’s a big brother!

Going downhill

Or not.

Our church has a family tubing day over the weekend. Crisp air but no wind – a gorgeous day and some good snow cover make it really inviting.

I tell Joey that we will “go out to the mountain and play in the snow.” Instead of watching his videos, he comes out and sits at the kitchen table, his sign of anticipation. When he hangs out in there, other than to eat, he’s saying, “Let’s get dressed and go.” So things look good – at first.

So off we go. Joey and I, that is. Melissa’s disability prevents her from doing this kind of goofy stuff. So the “downhill” theme is kicking in, for those who haven’t yet realized that the title of this post is about the quality of the day rather than the literal activity.

Joey and I get to the recreation area. He allows me to clip his tubing ticket to his jacket. That’s a good sign. He lets me put mittens on his hands – usually out of the question with his sensory issues. Another good sign. I am so looking forward to whooshing down the hill with him.

2013-03-02_12-42-34_606Then we get to the head of the line, where your tube gets hooked to a tow cable for a pull to the top of the hill.

Joey won’t sit on the tube. He makes his angry face and starts trying to walk out into the snow at the base of the tube runs. He won’t negotiate.

So I have to give in right then and there, because we are holding up an entire line of excited tubers.

Back to the parking lot we trudge. I don’t get to whoosh with Joey. I don’t even get to whoosh for my own pleasure.

Work and care giving have this amazing power to scrub the occasional opportunity for fun right out of my life. In the last few months, I had to bag a hunting trip instead of bag some game. I had an evening open to go shooting with my son and his fiancee’s brother in law, and that misfired. I’ve lost count of the number of dinner reservations and other outings that Melissa and I have had to cancel due to this or that care giving chaos.

If you visited the blog on Sunday, you know I’m dealing with accumulated stress. Tubing downhill in the snow would have released some of that. But thanks to the wonderful world of care giving, instead of going downhill in a tube, well, I’ll just let The Boss sing it for me…

Tips for heading off stress?

Tim here, with some phantom muscle pain this week.  Been to the ortho clinic, and I have full range of motion, no lack of strength, no evidence of arthritis or disc problems; nothing to explain why I wake up with searing pain in my shoulders.

2013-03-02_11-17-13_925I was visiting with a wise older lady on Friday, and she raised her eyebrows and said, “Do you think it’s stress?”

Could well be.

Now, I know all kinds of ways to relieve stress when it’s present – exercise, for example.

But do any of you have good ideas for heading it off before it arrives? Before it can settle in and start using my body as a late night party house?

Lots of folks I know suggest shutting off the news. That’s certainly one method, and as much of a public events junkie as I am, I find myself tuning the headlines out more and more.

Others ideas? I’m all ears. So say something before I get stressed out by your silence.