Out of the Mouths of Babes

Friday night was special. I spent the evening with family celebrating my great niece’s seventh birthday. Seven is a fun age, and her party was packed with things a seven year old girl would enjoy – pizza, new clothes for her doll, and a three layer cake covered with pink frosting and chocolate chips.

One of the reasons I enjoy family events is because of the laughter and love we share whenever we are together. Emily, the birthday girl, and her younger brother Evan who is four years old, kept us smiling all night. But it was an exchange that happened early in the party that continues to play in my head.

I was sitting with my sister Sandy when Evan approached us. Like most children, Evan is intrigued by my wheelchair. When he was younger, he was content to simply ride on my lap. Now he is determined to figure out how the controls regulate the various aspects of my chair, such as speed and seat elevation. Standing next to my chair, he displayed remarkable restraint keeping his hands at his side rather than reaching for my joystick. Suddenly, he turned his quizzical gaze to Sandy and this delightful interchange took place.

Evan: Aunt Sandy, where’s your wheelchair?

Sandy: I don’t have one.

Evan: Why not?

Sandy: Because I don’t need one yet. Maybe someday I’ll have one.

Evan: (looking delighted and excited, and clapping his hands) Then you’ll be twins!

The three of us laughed as Sandy picked up Evan for a hug. The party continued, with pizza, presents and cake. But Evan’s comments stuck with me and caused me to reflect as I boarded the bus to go home.

At four years of age, Evan already knows that a wheelchair is a cool piece of equipment. He does not view me with pity. He does not perceive a wheelchair or a disability as being a Bad Thing, with a capital b and capital t as said by the late, great Stella Young. Of course, he doesn’t understand all the intricacies of life with a disability because he is just four years old. But he understands critical information other nondisabled adults seem slow to grasp, such as:

1. I am my own person.
2. My wheelchair is not the worst thing in the world, or a reason to shy away from me.
3. I do not have a poor quality of life.
4. I am capable and competent.

Evan is not unique in his abilities. All of my nieces and nephews, and now their children, have been exposed to my wheelchair and my disability their entire lives. They have all developed a level of disability cultural competency through their interactions with me, a disabled family member. This has created a level of comfort with disability at a young age in many of them which their peers may not have developed.

When I am with my young family members, I don’t hear negative comments about disability. I don’t hear pity. I don’t hear insensitve or ableist comments like the ones I hear from strangers on a regular basis, such as:

You manage that thing pretty well!

Slow down – you’ll get a speeding ticket!

You got snow tires for that thing?

You’re so pretty for someone who uses a wheelchair.

Oh, you work?!

And my personal ‘favorite’…

I don’t know how you manage. If I had to use a wheelchair, I’d kill myself.

My young family members who have been exposed to my reality as a disabled woman say different things. They say things like:

That man has a red chair like Aunt Denise’s!

Maybe you could drive us to skating when you get your new van Aunt Denise.

Will you read to me Aunt Denise?

We put the ramp down for you Aunt Denise!

And my personal favorite…

I love you, Aunt Denise.

If my young nieces and nephews can understand disability is not the worst thing, why can’t more adults figure it out?

Race for Hope 2016

I can’t believe I’ve been blogging long enough for this to be my third post about the Capital Region Special Surgery Race for Hope. If you haven’t read my first two posts on this topic, you can read the 2014 post here, and the 2015 post here. If you want to skip them, here is a brief summary about the race and why it matters to my family.

The Race for Hope is a 5K fundraiser to raise money to support programs and services for patients who are in treatment for brain, head and neck cancer. Our involvement with the race began in 2011 after my sister Mary Jane was diagnosed with glioblastoma, an aggressive brain cancer. My niece Karen, Mary Jane’s youngest daughter, created Team MJ in honor of her mother. Karen first ran the Race for Hope, along with her brother and brother-in-law, in 2011. Mary Jane and her husband, Zip, cheered from the sidelines. Sadly, it was the only time Mary Jane and Zip would see their family run the race as they both passed away from their respective terminal cancer diagnoses prior to the 2012 Race for Hope.

Yesterday, family and friends gathered again in our bright yellow Team MJ shirts. We saw familiar teams – Susan’s Busy Bee’s and Linda’s No Taste Bakers – along with new groups. Runners of all ages completed the course, and this year boasted quite a number of stroller entries. One of the women from Linda’s team said many of their runners were walking with strollers this year.

Although the race venue and order of events remain the same, change is happening because life has a way of moving forward. Team members are having children and using strollers instead of running. Children who used to watch from the sidelines are now walking the race. New shirts are ordered because young ones are outgrowing the shirts they used to wear. New relationships mean new team members.

This year, I spent most of the race with my niece’s children – her three year old son snuggled in my lap and her six year old daughter riding on the back of my wheelchair. Together we danced in the parking lot, visited with dogs, shared a huge chocolate chip muffin, and cheered on the runners while waiting for Mommy and Daddy to finish the race.

In prior years, I have spent at least part of the race shedding a few tears while thinking about how my sister and brother-in-law would be so proud watching their children and grandchildren continuing to honor Mary Jane’s request that they do something for others who are facing brain, head and neck cancer. Instead, this year I laughed. How come nobody told me having a cuddly three year old boy wearing a Yankees cap in your lap was such a good way to avoid melancholy thoughts?! And you would have thought I’d known the enthusiasm of an energetic six year old would be infectious. I think I knew both of these things, but it hit me yesterday how spending time with happy children can improve your mood when you are searching for your own “happy.”

Mary Jane knew this. A few weeks after the birth of her granddaughter (the one who spent the day riding around on my chair yesterday), she sent me and my other sisters an email of the following photo with the subject “first babysitting job.”

Hi all – Zip and I spent the afternoon babysitting. What a perfect way to spend the day. MJ

My sister was a smart cookie. She knew how important it was to help others, even when facing your own obstacles. She taught those of us who loved her how to live in the moment, to cherish each and every day. And she understood unconditional love, like the love of a child, was a key to happiness.

So, we continue on, even on the days when happiness seems to elude us. We connect with those we love, and do our best to make life better for those around is. It is what Mary Jane would have done, what she would want us to do.