I finally made the decision. Took the step. Whatever you want to plug in for what is going down – I caved in. Since Larkin was born, doctors and some family and friends have encouraged me to get accessible parking permission.

I have never wanted that because we are not handicapped. At least in my mind. I can walk with her and carry her most any place. She slides into her chair easily, and we move through life. That was three years, 39 months, 32 pounds, and still not walking ago. My body aches from carrying her. My shoulders and back are killing me most of the time, and yesterday I couldn’t look to the right very well because my neck would catch and spasm.

Beyond me, it’s more about her. Larkin’s red blood cells have grown larger, and we have to observe her blood. I love her Hematologist; he’s a self-proclaimed “zebra hunter” who will ring an alarm when something is amiss. But her hands and feet are purple/blue and cold even if we keep her inside. So yeah – did anyone notice the negative temps here in Illinois?
I make shopping decisions based on how close I can park. How cold is the weather, how close can I get, and how easily I get inside with her. Do we need to eat dinner cooked at home, requiring me to stop at the store or order in?

When I took her to Florida in December, we flew from the Indianapolis airport. I was forced to park in the garage and pay a high sum for the week because I couldn’t expose her to the elements and park in long-term parking. It was an OK deal because I valet parked the car and called from the runway, and they had the car warmed up and met us at the door, and she was in a warm car seat right away.

I broke down after this cold spell because it cramped our ability to live an active life. I called her Neurologist for the accessible parking application. Why does that make me sob? Why do I feel so defeated? I don’t know and will continue to ponder it, but I have to think of it in the same way I think and write all her requirements for babysitters, friends, doctors, and school – “In Larkin’s best interest and for Larkin’s safety.”

Mother heed thyself – for Larkin’s best interest and Larkin’s safety, I need the license plate with the little wheelchair.

Larkin is working so very hard to walk. Larkin’s physical therapist and aide have her inside a hula-hoop. Larkin holds onto the hula-hoop as she is guided along to walk. We want her to walk without our hands or think she needs our hands, and the hoop is fantastic for helping her realize she can do this. The hoop also gets her hands out in front of her instead of behind. Larkin’s body is like jello when we do this, but that stems from being sick for so long and losing over 7 pounds.

WHO KNEW? A hula-hoop?

As the weather changes and it becomes warmer, I will be able to park close and allow her to practice walking from the car to our destination. She will learn the routine and won’t be defeated by fatigue. Independent walking is the goal, but we are closer every day.
It’s the little things we like to hang onto because somehow, it makes us feel OK inside. We are not “different”; we are not “handicapped” ….. pride goes before a fall, and I can’t allow Larkin to fall literally and figuratively.

When the placard came in the mail, and I saw the wheelchair and the words PERMANENT I must admit I was undone for a long time. A broad space of grieving that must be navigated between knowing something in your head and SEEING it to become real life.   I caved in, and it felt terrible.

I will let this go in time, and my heart will stop yearning. It is OK, and life moves on, one shaky little step, with a belly binder, a walker, my hands, and a hula-hoop at a time. And when she does take those independent steps, my tears of feeling like I am caving in will become tears of joy.

So if I see someone waiting or parking in an accessible space using it as a convenience now, one may know how it feels to those of us who use those spaces and the grief surrounding it. Hence, the anger, because we never wanted this ~ it is necessary, NOT a privilege.