For a person with a social disability like the girl’s, the lack of engagement and lack of structure that summer brings can be the worst enemy ever. For the parent of a person with such, it can be complete torture. Or so I thought.
Some days, or most days, I am completely cool with the reality of our lives. I know her limitations and I embrace the quirks as part of the blessing. I have even begun to feel a sense of companionship versus parenting when I look at my relationship with my girl. Companionship by way of walking to the coffee shop, choosing a lunch spot, window shopping, and going to the library. We plan our outings days in advance–mostly my attempt to give her reason to get up and be somewhat engaged with the world everyday. Always effort.
The complexity of this companionship fuels my own longing for complete surrender and understanding. My work is to allow her to be exactly who she is and know that the challenges that exist can also be opportunities for me. The sometimes complicated emotions I feel are evident as I glance over and she clutching an oversized stuffed animal and a satchel filled with crayons. I am reminded that our conversations are mostly one-sided. The outings are carefully planned to include a preferred place, usually something in the form of chocolate or something sweet. It is usually a short-lived outing and always with purpose. To just sit and chat somewhere and look at our surroundings is not part of her repertoire. I feel defeated. I feel hopeless. And yet, she is filled with gifts that I am supposed to see.
As we left the craft store with our bag stuffed with coloring books and paint sets I was feeling overly gloom about the notion that being her personal activity coordinator was going to my long-term reality. I realize this is exaggerated thinking but it was fuel for my personal pity party. I imagined her being 21, no longer getting public education services, and the wait-list for adult services funding still being just that—a wait. I had thoughts that were not very useful. Thoughts like just how many coloring books can a person want?? Will we always have to choose places that serve chicken strips that are made to her liking? Will we ever be able to just hang out and not have a reason to be somewhere? Will she ever tell me what she is thinking instead of me asking a gazillion questions when she is giving me the “mom-something-is going-on-in-my-head-and-I-need-something-stare”?
We got in the car and began our way to the next stop when she turned the dial up on the radio volume. (She has just discovered the fun of sitting in the front seat and the radio is something she loves to control). In an instant my self-centered pity was over. She looked at me while enthusiasm rarely seen and said, “Mom, this is our song!!”. I have no idea why that particular song is our song but in her heart it must mean something to her. Singing loudly we drove to down the street and I could feel my feelings of hopelessness begin to leave my body. With her hand stuffed into her Sonic kids meal, she flings out a hot french fry and offers me one. That was the closing deal of the pity party.
You see it does not matter whether we are companions or mother-daughter. She is usually content. She is mostly happy. She has her stack of coloring books and new crayons. She has her food. She has me.
Again, I was reminded that this is my stuff. My opportunity to grow. My chance to live by her example. As I write this, she sits across from me painting a picture with her new goodies, her iPad blaring current Top 40 hits while she happily (and loudly) sings along.
Simplicity, being present, and noticing the little things in life that bring joy. Indeed.