Archive | June 29, 2012

Reasons to Live Friday #5

My Reasons To Live Friday is all about taking what you’ve got, and making the best of it.

This week started with a visit from some cousins from Germany that we had never met. Here’s the family tree- try and keep up:

My mom’s mom’s brother’s son is her first cousin. He got married. Had two little boys. Ten years ago, he committed suicide after both boys were diagnosed with Muscular Dystrophy. His wife Kirsten has raised these boys by herself, with not an ounce of help from his side of the family. Thankfully she has her own friends and parents that can help.

The boys and their mom, Kirsten, and a good friend Ulrika, came all the way from Lubeck, Germany. They rented a van and will drive down to Disneyland to see the coastline. They flew in to Seattle and had just a couple days to visit, so we squished as much time in with them as we could.

Benjamin is 16, his MD is advanced to where he is in his wheelchair all the time and uses a laptop that is voice activated to do his school work. He has limited arm function but can use his hands to hold a knife and fork or his cell phone.

Jonathan is 14, his MD is advanced also to where he is in a wheelchair. On top of that he also has Autism. He can still write, but next year will also get a laptop to help with school work. His arm movement is limited as well. He uses his hands for holding his fork, but his mom cuts his food for him. He insists on using a fork, even for pizza! I don’t think he likes his hands messy.

Their entire days are spent in wheelchairs. They need help to the bathroom, getting dressed, and eating. This will only get worse. Google Muscular Dystrophy- it’s not pretty. Eventually their organs will shut down. Their loss of muscle function decreases exponentially now that they are in wheelchairs. MD is a sonofabitch disease. To suppress symptoms you need to be active. The more active you are, the more you delay the onset of the disease. But eventually it wins, and your activity level decreases, thereby it takes over more aggressively.

Their bodies are starting to atrophy. They seem so little, so skinny. Their shoe sizes must be the same as my kids. Owen would ask, how much does he weigh, or his legs are so skinny. Owen can relate being a skinny guy himself. He’s self conscious of his skinniness (only because kids point it out to him, argh!) and now he can appreciate the fact that he will get stronger and bigger, despite his skinniness. Whereas Benjamin and Jonathan will not.

Within a couple hours of the kids hanging out with each other, you wouldn’t know that they had just met and don’t speak the same language. Benjamin can speak a lot of English. Jonathan does not though. He doesn’t speak much at all. He is quiet and to himself. You could almost forget he is there, he is so quiet. And of course, he is so still. But Owen and Emma didn’t let him go forgotten.

How a 9 year old boy can spaz out, make funny faces and arm farts to complete strangers and feel completely comfortable in doing so, is beyond me. Jonathan was in giggles in no time. Owen brought out his iPod and he and Benjamin took turns playing RocketBird, over and over again while Jonathan watched happily. He never wanted a turn.  The squeels of delight and giggles of camaraderie were  becoming infectious! At every mealtime, the iPod would come out either while waiting for food to be served or waiting for others to finish. When Owen started making silly faces and sounds, Jonathan would make his enjoyment known.

I came to learn that first night when they needed to go back to their hotel, the reason Jonathan wasn’t saying goodbye, wasn’t out of shyness or having his virtual social wall up, but that  he didn’t want to go! He was having so much fun, he didn’t want it to end. His protestations were so quiet and also in German, so I didn’t quite understand until my mom told me later.

I can’t describe to you the feeling that filled my heart watching my children get along with their cousins. Not showing any boundaries, any limitations. Then after our time together, both my children expressing how much they enjoy them, how much they want to see them again.

Emma had to spend the next day at rehearsal so it was just me and Owen to go to the EMP (Experience Music Project) in Seattle. For the next few months one of the exhibits is the movie Avatar. With props, costume pieces and documentaries from the movie. When I told Benjamin this, his face lit up. “That’s my favorite movie” he exclaimes. I shared this with James, oblivious to it’s deeper meaning. When he looked at me and said, ‘of course, think about it’. DUH. The main character in Avatar is in a wheelchair! Tears came to my eyes just then as it hit me.

During our outing which included a ride to the top of the Space Needle, I tried so hard to get a little nudge of response from Jonathan. He would smirk and look away. It was hard to take his picture too. But eventually I could catch him in a moment of silliness with Owen.

Jonathan is on the left shying away from the camera, Owen, and then Benjamin

Their mom doesn’t want the pity. She says coming here to the States is so nice because of all our accommodations for wheelchair access and those with disabilities. She told me that people in Germany are of two groups- the type that constantly want to pity you, or the kind that want to ignore you. Americans treat them like anyone else. They don’t feel so ‘different’ here.

Spending the day with wheelchair bound folks really makes you think how easy life is to be WITHOUT wheelchairs. At the Space Needle, the observation deck is separated by doors with a small set of steps. One of these doors had a wheelchair lift. When we got there, it was OUT OF SERVICE! So Kirsten and I did the old stroller method. I was at the bottom of the wheelchair by their feet, she was at the top and we hoisted those suckers down those stairs. Good gracious she needs to be strong and well to look after her boys! This is why she has a friend come along.  It truly takes a village.

Benjamin has hopes to come here often and maybe live here. If I could give them the gift of time, I would. They do not live their lives as if they are set with only a certain number of years. They dream and plan like teenagers do for their future. They don’t complain, they don’t wallow.

As much as I want to see them again, it pains me to think of what they could be like in another year. And then the year after that.

I am so incredibly grateful for the time we had with them this week. My kids are forever changed. They have new cousins they love and want to keep in touch with. They have a new perspective on how easy their lives are. They want to go to Germany soon too. I do too.

My Reasons to Live Friday is pretty simple. Each day is a gift. Open it like a present and make the most of it!

Peace and love.