They are Sixteen Going on Seventeen…

Emily and Rachel at tea
2 1/2-year-old Emily and Rachel shared invisible tea for a very, very, very patient photographer.
Emily, Angie, and Rachel Fall 2014
Emily and Rachel are such an important part of my life!

Really? Sixteen? Not long ago, they were very little ladies finding their place in a childlike world. Today, we are so proud of the beautiful, talented young ladies who are making their mark on the world around them.  June 8, 1999 was an unforgettable day indeed. I may joke about parts of motherhood, but life is truly enhanced by Rachel and Emily. They don’t only make me smile, but they demonstrate caring, compassion and love in everyday life. Lest you fear perfection here, know that we do have typical teenagers who don’t enjoy cleaning rooms, like to hide in the bathroom when time for chores comes, and who often disagree. Loudly. But we couldn’t love them more, and we are so excited to see what the coming years hold for Em and Rach.  We’ll travel back half of their life, and I’ll share the blog I posted exactly eight years ago, reminding us to dream and to reach. (next week the “accessibility” thread will begin again. 🙂 )

Tracking Unicorns and Chasing the Moon
published June 7, 2007 – Eight years ago!

Unless you were on another continent this past winter, I’m sure you remember the Valentine’s Day blizzard. My second grade daughters will certainly not forget. They notice things I fail to see, and I love hearing their descriptions. The “older” twin (by thirteen minutes) received a book for Christmas about unicorns, and she had been on the lookout for telltale signs of visits. So it was that after the winds died down, leaving drifts galore, my daughter came excitedly to me, “Mommy – there are tracks! Unicorn tracks!” Sure enough, we could see through the window that one corner of the yard did show indentations in the snow. We had seen tracks from squirrels, birds, rabbits, neighborhood cats… and these had to be tracks from unicorns. To prove it, she retrieved the book and showed me a drawing of the type of unicorn this must be.Now her “younger” (and a bit shorter) sister has seen fairy rings and leprechaun signs, but the whole school got to see the starry-eyed dreamer at their variety show in May. Shel Silverstein is the girls’ favorite poet (quite appropriate for any self-respecting second grader), and she wanted to recite one of his poems. After careful consideration of several of his masterpieces, this young, starry-eyed girl chose Moon Catchin’ Net. So it was that with a butterfly net perched on her shoulder, she faced the microphone and declared, “I’ve made me a moon catchin’ net, and I’m goin’ huntin’ tonight!” I could just see this little girl chasing after the moon, swingin’ from the stars.

This Friday is the girls’ eighth birthday, and I hope I can continue to learn from them as I also hope I can teach them. Looking at the world through starry-eyed glasses isn’t always a bad thing. Granted, we can’t run through life always chasing the moon and tracking unicorns, but the girls help remind me that different perspectives do see the world a little differently. My “moon chaser,” while talking with me about this blog and possible topics, wanted to know if she could help write any of the entries. I said that I would love her to share her ideas, and not one to hold back words (ever), she had one idea already. “Mommy, I know there is at least one boy and one girl at school who have disabilities.” I know there are more than those, but she is thinking of people with a wheelchair or who have difficulty walking… and she’s right. I have watched the care and compassion that the school teachers and staff show to students who have physical or other kinds of issues. Seeing this example can plant seeds of compassion in the hearts of the students around.

So “Happy eighth birthday!” to my girls. I like a statement by writer Monica Petter in her essay “No Old Weeds, Please” in M.S. World, February 2007. “You can’t climb mountains without any legs, but you can find a way to the top if you dream.” Let us never lose the ability to chase the moon, track our neighborhood unicorns, or climb those mountains.

“Beware the Chair”?

lessons to be learned from a campaign gone awry

When I was first diagnosed with MS in 1997, I must say that one little fear I had was that of “ending up in a wheelchair.” I wasn’t certain what that might mean, and the unknown was a little disconcerting. Since that time, I have learned so much about mobility, stereotypes, and… well, life in general.Knight-110

As it was, seven years passed before I started using a cane to keep my balance. Another eight or so years, MS had expanded its reach just a little, and a physical therapist officially informed me that I was to use a walker when moving around of my own volition, as my sense of balance and coordination just didn’t work
together enough to keep me safe. (I likely should have made this move earlier, as I’ve tasted a little more pavement, concrete, dirt, and flooring than I had ever intended. And no, I did not plan any of these taste tests.)

So I do use a walker regularly, and friends and family have gracefully become accustomed to folding this contraption to bring with us in the car when we travel. But the walker requires legs with  enough energy to walk, and to do so at a reasonable pace. Because of the amount of energy it takes to traverse some spaces, we do often use a manual wheelchair.

trandangiemacinacI view the wheelchair as a useful, appreciated tool, a helpful piece of equipment that allows me to attend events, visit museums, go shopping… to experience life, really, without fear of buckling legs and kissing the pavement. This is likely why a recent campaign rubbed me the wrong way. I believe “Beware the Chair” was meant to warn women about the importance of taking care of their bones, avoiding osteoporosis, so they wouldn’t “end up in a chair.” A remote control wheelchair chased women, meant to scare them into considering bone health. Really?? Are we meant to view wheelchairs with doom and disdain, and is this really going to assist women as they tackle low bone density?

These questions were tackled beautifully by Emiy Ladeau in a piece she wrote for The Huffington Post, “Beware the Scare tactics.” As one who does use a wheelchair due to disability, Emily attacks the fright attached to the use of a chair, rather than fear of bone deterioration. The biggest lesson from this campaign came the day after her piece was published online. The organization that first posted the ad at www.bwarethechair.com completely retracted the campaign as it was, offered apologies and directIng viewers to information directly related to osteoperosis and ways to maintain bone health.

Why is this hitting me today, of all days? June 3, 1997 was the day I sat in a neurologist’s office and heard a diagnosis of “probable multiple sclerosis.” I didn’t know what this meant, and I know I was wary about a lot of things, but I am thankful that people like Emily Ladeau work to reduce the stigma associated with disability. As she recommends, I hope I can “make disability issues accessible to the world.” Maybe I can help these issues that were invisible to me before June 1997 to become more obvious. I’ll keep plugging away in the weeks to come – we have a lot to learn together here in Grant County and beyond!