Monthly Archives: September 2014
Growing Up
Orion turns 26 years old this week. I can’t even wrap my head around that. He’s approaching this birthday with typical enthusiasm. He’s excited to have a theme to use in his interactions with people, especially when he knows they’ll all wish him well. He’s excited about going out to a new restaurant he learned about from the guy who delivered his new wheelchair last month. In fact Orion invited the guy and his wife to his birthday dinner and still holds hope they’ll be there.
For me every one of Orion’s birthday’s is a little bittersweet. I love seeing him so happy. I love watching him shift and grow as he explores new ways of being in the world. I love that he doesn’t care at all about presents, he just wants attention and hugs. His upbeat attitude is contagious. I don’t know what I’d do without him.
But I also understand the limits of his independence, which become more obvious, more pronounced as he ages. He doesn’t have aspirations for a career, or even a job. He’s happy to help out when he’s asked and able, but even his day program hasn’t found a part-time volunteer placement for him in the last 2 years. His future possibilities get smaller and smaller with each passing year.
There’s also my part in all of it. I’m not sure that it’s still the best option for either of us to be “tied at the hip”. As his primary caregiver I’m very much aware of how little I’m able to do to move him forward. That’s been particularly obvious these last few months when our mobility has been additionally limited by my recovery from the surgery. Caregivers are hard to come by. Orion needs stimulation and he’s become too comfortable with the status quo to be motivated to move forward.

I took Orion to Mazatlan when he graduated HS. He’s always game for an adventure! – And the locals were very impressed with Orion’s Spanish.
When Orion was born we were told that he’d probably be a vegetable and would be dead before he was 5 years old. I didn’t think that the evidence supported that conclusion then, and clearly rejecting that comment was a good decision. I have an enormous amount to be grateful for. Orion has been such a blessing in my life. He’s an inspiration, a delight, and a wonder.
Orion, may you continue to take joy in the world around you. May you continue to work at developing social interactions and the skills to build relationships. May you find ways to do the things you enjoy that are also productive and sustaining. May you always be open to new experiences, new people, and new possibilities for your future.
Happy Birthday!
Autumn
With the Fall equinox upon us I’ve started to notice the signs of autumn creeping up. The leaves are just beginning to turn. The trees that have been severely stressed by our odd weather are further along, but the majority are just hinting at colors.
That stress is definitely in the air. One day the highs are barely above 60F the next they’re well into the 70’s. Mornings are cool, almost cold when they are damp. There’s been hard frost further north and it would not be unseasonable to see some here in the city. It’s difficult to dress for such unpredictable, changeable weather.
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The sun shines, equal with the darkness. It still carries warmth with its light, but that warmth seems more focused. It gets hot in the car, if it’s in the direct sun, but the warmth doesn’t creep past the edges of the shadows of the tree line.
I’ve had a fire or two in the fireplace, trying not to turn on the heat. It’s difficult to crawl out of bed when the temperature in the house is below 65. When I do turn on the furnace (because it’s impossible to get out of a warm tub when the air is that cold) I try to remember to turn it off again. Sometimes I get to wondering why I’m so hot before it occurs to me I’ve forgotten.
At least with the heat on the air is filtered. The cool and damp is ideal for mold – one of my worst allergies. It will get worse before it gets better as leaves fall into mulch. Soon I’ll be begging for the hard freeze, but I wouldn’t begrudge a few more weeks of summer weather after.
Happy Autumnal Equinox!
Previous Equinox blogs:
Wedding
We went to a family wedding this weekend. I’m at that age where I really appreciate “weddings and funerals” as an opportunity to get together with the extended family, the relatives I don’t see very often. Even at these events people tend to cluster with their “immediate” families. Still, it’s nice to see how everyone is doing, aging, and whose kids (the names I can’t keep track of) are now grown.
This wedding was particularly special. On my Mom’s side of the family I’m the oldest of the girl cousins, and Becci is the youngest. Additionally our families have been close. We used to camp together growing up. My Mom and my Aunt would plot to sneak the leftover marshmallows into the other one’s camp kitchen to take home. S’more’s are essential camp food with kids, but neither family had any real use for marshmallows in their day-to-day lives.
My Mom is the oldest girl in her family and my Uncle the youngest. Their age difference is about the same as mine to my Uncle. That’s about the same difference as between me and my cousin. That’s about the same difference as between my cousin and my daughter. Becci is getting married in her 30’s. She’s breaking the chain. But waiting for “Mr. Right” seems to have held her in good stead.
The wedding was particularly well attended. Both the bride and groom come with large extended families. Both of them also have a presence in their small town communities. People have watched them grow up, build careers, and wished them well throughout their lives. It was a nearly impossible task to keep the guest list numbers down.
Those of us who’ve had weddings know there are a certain number of invitations that get sent out with the expectation that those people will never come. They are invitations that are necessary to send, as announcements or because of an obligation of manners. People spread out in our society and traveling 3 hours, 6 hours, 9 hours, 12 hours, days “just for a wedding” gets expensive. However, for Becci and Caleb people were willing to do just that. There were so many responses they had to change the wedding venue. Instead of getting married in the church where her Uncle preaches, Becci got married in the Auditorium of the High School where her brother teaches music. They filled the seats!
It was a beautiful event. They did a lovely job decorating the space. The service was personal and joyful. The caterers served good food to nearly 500 people and everyone ate in less than 1 ½ hours. (We tended to have meals in town at the restaurant that catered the event.) The DJ’s did a good job with the music and Orion got to dance with the bride. I even danced a little!
Being in Wisconsin, we even had time between the wedding and the reception to sneak over to the bar. There is nothing like fresh fried cheese curds for an afternoon snack! Wisconsin beer, however, is off my menu post the bariatric surgery.
As Orion so eloquently told everyone the next morning, “I have nothing but love in my heart for the newlyweds!”
Busy

Riding Metro Mobility in the early morning rain. The only way to get us to an appointment without me lifting the chair!
It has been a busy week, which is kind of nice. We’ve had medical appointments, adventures, and a day in the park. I’d say it’s been ups and downs, but actually it’s been mostly ups. Sure the challenges have been there. I’m still not putting the wheelchair into the car so logistics are complicated. But all the potential roadblocks were addressed and things continue to move forward.
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It really was a week of medical. All of my standard appointments, plus Orion got his quarterly botox shots (to help with the spastic tone in his legs) and I had another CT following up my ER visit a few weeks ago. That’s what I thought this blog was going to be about at the beginning of last week. Then I started having fun.
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A friend got tickets to a concert by the Cactus Blossoms and invited me and another friend to join her. Girls night out and fun country music, why not? We had a grand time. Even the opening act was delightful. Andru Bemis proved to be an impressive musician and entertainer. I didn’t get up and dance, but by the end of the concert I was on my feet rocking to the music. Nice to be able to do that again!
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The day in the park was for Pagan Pride. Our community has been doing a Pride event for a long time. In the past few years Pride has presented itself in a very public way at Minnehaha Falls Park. It’s nice to be out under the oak trees, but it’s also nice to have some visibility in the larger community.
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When Pagan Pride first started it was indoors at a closed school. Now it’s out doors and very public. Times have changed.
There are vendors, public rituals, music and dance performances and a lot of chatting with old friends. Members of the Reclaiming community set up a labyrinth and other groups have booths promoting festivals and local events. It’s a large community so there’s always something going on.
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It was a beautiful day to be outside. In fact it was a beautiful weekend, cool but warm in the sunshine. I even got to have dinner out Sunday with another group of friends. A side order of humus should keep me in lunches for a few more days. “Small portions” has taken on a whole new meaning, but I’m feeling good and really enjoying being out and about.
Sailing
I promised I’d let you know how sailing went. It was delightful! We had a pretty calm day so we drifted back and forth across the Mississippi River at Lake Pepin. Three middle-aged women in the middle of nowhere on a perfect day just chatting was exactly the right way to treat myself to a “time out”.
That was the whole point of going sailing, to take a real “time out” and do something fun just for me. I had the whole day so the hour and a half drive down and back was not rushed. We saw eagles and turkey vultures flying over the bluffs around the river. It was a lazy day, but a stimulating one. I love being on the water. It relaxes me in a way that nothing else can.
I haven’t really been sailing. I’ve been on a catamaran on the ocean. I’ve been in canoes. I’ve been in motor boats and pontoon boats. I’ve always wanted to sail. There’s something about the water and the wind that appeals to my sense of imagination. It seems like there’s a freedom in sailing. The potential is there for speed, but also quiet.
We spent all afternoon on the water. When we came back to the marina and got the boat put away for the evening I felt I’d made a new friend in Captain Beth. My first words ashore were, “Can we do it again!?”
I think it’s important for all of us to treat ourselves on occasion. Sometimes that’s a quiet solitary retreat. Sometimes that’s trying something new and challenging. Sometimes that’s making a dream come true. Whatever it is I am starting to be more aware of things that actually feed my soul. I’m starting to prioritize making those things happen for me more frequently.
It’s challenging to do things “just for me.” I’m finding it’s also very worth the effort.