Neon Lights, Purses and Metaphors

I want a flashing neon light pointing me in the right direction answering my questions.I ask Him often for one, but God has yet to send me one.

This week he sent me a purse instead. Let me explain.

I have a friend that has great purses. This week at a dinner I shoved my disheveled purse under the table and didn’t think about it much until I saw hers. It was beautiful. I think what I liked most was that it was clean and sat there nicely. I didn’t look inside, I’m sure it was organized though. I was jealous of that purse.

The more I thought about it I was almost embarrassed of my own. For one, there is a blue paint stain on it. I have no idea where from. It is as old if not older than my youngest child, I think it is closer in age to my 7 year old actually.

It was old and tired looking, just as I’ve felt the past couple of weeks. My friend’s purse, if it is a thing, looked like it had energy and was ‘put together.’ I wanted to feel put together, not old and tired.

I wasn’t going to buy one. We are a large, single income family, and our budget doesn’t have a “mama needs a new purse” category.

I didn’t look online or go to a nice store to look at one. But…as I was getting groceries at Wal-Mart yesterday, I perused through the purse isle. I saw a cute little purse. It didn’t look like my friend’s purse, but it was small and would lay across my body and I would not have to worry about it falling off my shoulder when helping kids and carrying everything else I carry. Better yet, it was on clearance for $7! It came home with me.

I didn’t have time to switch it out before I picked up kids from school. When we got home, I put one backpack over my shoulder, my old purse on the other shoulder, grabbed my water bottle, coffee cup, and a lunch bag. I walked around the van and used one arm to help my son out of the van. As I put him down, he was on one foot and couldn’t hold his weight. He fell to the ground. My son with weak muscles fell because my hands were full. I didn’t even realize how full they were until I set everything down to help him up. He was okay, but I felt horrible.

Our day went on. Eventually, I switched my purses out. I found 4 little people princesses, 20+ grocery receipts, 13 or so pens, dollars worth of loose change, 2 toy cars, gum, glasses. The worst though was a piece or several pieces of disintegrated gum had left sticky residue over everything in the bottom of my purse. That left over residue was holding everything down. I cleaned up what I could, tossed the rest, and put only 4 things in my new small purse. It felt therapeutic!

This morning with my new purse slung crosswise over my torso, I used both arms to gently and easily lift my son out of the van and put him securely on two feet safely on the ground.

It hit me just at the moment. It wasn’t a flashing neon light, He didn’t use the purse to hit me on the back of the head to wake me up, it was just a simple thought.

When you don’t carry so much, you don’t drop things.

In full disclosure, this happened after a therapy appointment for my son. I am the mom that hijacked some my son’s therapy appointment. I love when health professionals see the whole family. She reminded me that our situation is unlike just about anyone else’s. When I need help, it is because I have a lot and it’s okay to need it. I knew everything I was being told, but it makes me feel better when someone licensed says it.

But that conversation, my new purse and my literal and metaphorical lighter load all were telling me the same thing. When I don’t carry as much, I don’t drop things.

Holding everything yesterday and still thinking I could help my son out of the van is a metaphor for what I’ve been doing the past couple months. I’ve been holding everything and still thought I could help everyone. Maybe I didn’t get the easy flashing light answer I would prefer, but maybe then I wouldn’t have learned from it.

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Acceptance creates Accessibilty

I am not an expert on accessibility, culture or acceptance. Before my sons were diagnosed with Duchenne Muscular Dystrophy I didn’t know what I didn’t know. After 8 years, I am still learning, but I have meaningful insight.

Duchenne Muscular Dystrophy (DMD) is a progressive muscle disease. Children living with DMD can walk, run, climb, some can even jump or ride their bikes as toddlers and young children. As their muscles weaken however, they lose those abilities and during various stages of the disease will slowly lose the ability to walk and levels of independence and will use strollers, scooters, manual wheel chairs and power chairs to maintain mobility and independence.

It doesn’t happen overnight and is a gradual process. For the first 4 years of my oldest sons life he walked, rode in the cart at the grocery stores, or was carried. Once he was diagnosed and we learned more about his muscles and preserving them, we incorporated a medical stroller, he now uses a mobility scooter and someday, unless better treatments or a cure is developed first, he will need a power wheelchair, as will his brothers.

We have been fortunate enough to travel with the boys and of course are active participants in our own community. Our boys are still mobile, but at times need their scooters, especially for lots of walking or long distances.

The things we encounter as barriers to accessibility are limited parking spaces for vehicles with handicap placards, buildings with steps at the entrance with no other accessible entrance, limited amounts of seating for individual using mobility devices especially in theaters and gymnasiums, blocked accessibility like cars parked illegally in handicap accessible parking stalls, or door buttons that are blocked or disabled, narrow isles, curbs, accessible entrances that are awkward to get to, hard to find, and often send you on very scenic routes through buildings and back alleys.

Some of those issues are policy issues or programmatic issues as individuals we may or may not be able to impact alone. I encourage everyone to look at the structural barriers to accessibility though and make suggestions, advocate, and make future plans that will remove those barriers.

As a mom, and that is where my experience begins and where my heart remains, an attitude of acceptance has either been then deal breaker or maker.

When we travel with all 3 scooters, especially outside of our home town, people stare at us and they make rude and insensitive comments, like, “kids these days are so lazy.” People avoid eye contact with the boys and sometimes avoid them all together. Traveling out of state, airports, and vacations all can be anxiety provoking. We figure out how to navigate airports, accessible transportation, elevators, and hotels and restaurants with 3 scooters though; we have plan B’s and C’s. It is poor human behavior that is the greatest barrier to accessibility.

I can tell you this, our good experiences have probably been greater in number than our bad experiences, but the bad ones are hardest to forget and steal some of the joy from the good ones.

I truly believe that more often than not, the people that hurt us with their stares and comments are not bad people. I think when people are uncomfortable or scared they lose common sense. Because all it really takes is a smile or a friendly hello. It is okay to say you like their scooter or introduce yourself. It would be fine to hold the door open. Those are common-sense thing, use your common sense. Meeting new people that use a scooter or a wheelchair does not have to be unlike meeting any other person new to you.

Do for others what you would want done for yourself. It’s the golden rule. It’s not rocket science. It’s common sense and it is kindness.

In my experience, the right attitude can overcome any barrier to accessibility. The right attitude can overcome a structural barrier.

Kindness and acceptance creates accessibility.

We chose a small private middle school/high school for my son that was not accessible. That’s right, my son with DMD goes to a school that IS NOT ACCESSIBLE. And we love it. That’s right, WE LOVE IT!

I don’t love the stairs to the lunch room. I don’t love that there is a wing in the school that he won’t have access to in years to come. But, I love the way he is accepted and treated. He is included. He is wanted. He is blossoming in that environment.

Once the school district knew Max was coming, they fundraised thousands of dollars to install a lift in the school so that he would have access to the library and upstairs classrooms. I didn’t ask. They did it. They had an attitude of acceptance.

There are stairs to the lunch room with no lift, so they used common sense. They offered to bring lunch up to him. My son wanted to be with friends so when we offered to carry him up and down instead, the school said yes.

The kids at this school have an attitude of acceptance. When I carry Max they don’t see a middle school boy getting a piggy back ride from his mom. They see Max getting the help he needs however it will work. They are kind to him. They smile at him. They hold doors open for him. The school and it’s students help him. I can’t say often enough that kindness and a dose common sense have made this building accessible.

It’s not perfect. Parents park in the handicap stalls when they pick up kids. The gym has no space for someone sitting in a wheelchair to utilize. These are things that I challenge all of us to do better at and plan better for. Be advocates!

Just as important though, this mom says be kind and remember to smile.