Every time I am trying to find a place to park I want to run for city council. My ONLY opposition will be to change the parking lots handicap parking to have some van accessibility access only spots and they should be in the middle of the lot so no one wants them. Leave the regular handicap spots up front. Just give us wheelchair van folks more yellow spacing lines. Oh and while I’m on city council I’ll make it a felony to park in the yellow spaces and it’ll be a life time sentence of community service patrolling parking lots. Oh just kidding. Or am I?
Also whenever I go somewhere new with Lily I get anxiety wondering how wheelchair accessible the place will be. If the space is narrow I worry. I apologize for squeezing by and making people move to accommodate us. I also make a note to never come back there again no matter how lovely the experience.
I do this even when Lily isn’t with us. Oh we could never bring Lily here. Oh this would be perfect for Lily. Even our 13 year old Andi Jane on a beach house vacation with her best friends family this past fall break came back to let us know that place would never work for Lily. Even she can’t go anywhere without assessing the wheelchair accessibility.
Once my niece eyed a table at Chipolte and when it was available she jumped on it, the only wheelchair accessible table in the busy restaurant, and the evil eye she got from someone who was also waiting for that table was possibly deadly if she tried just a little harder. And even seeing me with Lily join her at this coveted table, didn’t soften her glare. She was gangster over that table and felt fully deserving of it. Sorry lady, did we inconvenience you? Welcome to my world.
Inconvenience is my middle name. Actually it’s Dawn, but considering a legal change. Kim’s the name and inconvenience is the game. My life long challenge. My cross, if you will, to carry. Going anywhere always takes thought, planning and energy. And to wish for it to be easier is to wish for things I never want to wish for.
The babies will get older and independent. The big kids just keep getting bigger. But Lily. Our sweet sweet Lily. She grows in body, but everything for the most part stays the same.
Because of her, my primary job is and will always be, her mama. A badge I proudly and exhaustively wear, my special needs mama badge. You may have heard of us. You may know one of us. Or you my sister, you are us. No one knows this badge like us who wear it.
We are tired. So tired. We are at times filled with hope and at other times filled with none. We sometimes wear shoes that don’t match. We sometimes go years with out getting our hair done. We stress and worry so much on the inside, it shows on the outside. We’re hard to make plans with, but when we show up we are a lot of fun, because blowing off steam is a wonderful (rare) thing we get to do. We can cry pretty easily and also be a little rough around the edges. We can be full of empathy and sometimes a little indifferent. We are nothing like who we were before getting the honor to wear this badge and although we wouldn’t return it for anything, we sometimes imagine what life would have looked liked without it and shudder. I was so selfish we remember. So unrealistic. So naive. And then we have mama friends who had that badge, that one badge that their whole identity was defined by and suddenly their badge was taken and they sit unknowing who they are without that badge and my heart aches for them and all I want is to hand it back to them. Their badge. This inconvenient, stress giving, anxiety inducing, beloved, beautiful badge.
Typically I get up each day and live my inconvenienced life as it is every day normal to me. But some days I get a little introspective and think about this life. And this badge I wear and think about this life I live and I realize how different it is no matter how hard I try to normalize us, it will always be different. But we still show up. Lily still joins us on our outings, our travels, our everything because she is deserving. Just because it’s hard and an inconvenience doesn’t change her worth.
But it is hard and acknowledging it is OK. I am learning that blazing by with a pretend smile saying everything is fine is actually not OK. Admitting the hard. Not focusing on it. Admitting the pain. Not focusing on it. Admitting the stress. Not focusing on it. We acknowledge, but not focus. That is where the hope can be found. It is where the worth lives. Knowing something is hard, but ALSO KNOWING it is worth it, is what matters. So I may look disheveled and tired and I may be hard to talk to and I may be a little tipsy on a night “off” but I’ll be wearing this badge pridefully because Lily is a gift. She is a reason to change everything for. She is worth adapting everything to make her smile.
Show off that badge mama, you deserve to let it shine.