I snapped this picture of Bella licking her Nana’s living room windowpane on a lovely English summer’s day. Nose smashed, enjoying a sensory moment that only children of a young age can indulge in. Eventually, she saw me watching her. Once our eyes met, she desperately wanted to be on the other side of that window with me.
That moment before she walked outside has lingered in my imagination. That, I thought, is what it will be like when I am dead. Seeing her from the other side. Knowing she is there without me… longing to be together… unable to touch. Since then I have never been able to look at Bella through a window without a pang of longing.
We are both very aware that death will one day separate us. We have come to our reckonings with this in different ways.
When my hair first started going gray, Bella was especially alarmed, “I don’t want you to grow old and die, Mama.” I dutifully colored my grays away for years until she became more accustomed to them, even saying they looked kind of pretty on me.
For a very long time she would panic any time I ate anything sweet. “You can’t eat cookies, I want you to live to be 105.” “How long will I live if I eat cookies?” “103.” “I’ll take the risk.” Eventually, she relaxed about sweets.
We pepper our days with silliness and laughter. Jokes that only we understand. Skits and songs and stories that would be nonsense to anyone else. Weaving a love language that we will carry forward in our memories.
She knows my favorite days are when the sun and the moon are up together, and I proclaim that anything is possible on those days. When I am on the other side of that window, I hope that sun and moon days will give her fortitude and a feeling that I am near.
When numbers line up on a digital clock, like 3:33 – we both love to point and show each other. Naturally a thing like that happens frequently, and it promises lots of opportunities to feel connected in the future.
Butterflies and hummingbirds have always seemed like messengers to us. So we say hello to them, addressing them by the name of a person we have lost when they appear. One day, I know my girl will say hello to me in this way.
I read to Bella as much as possible. There is a blessing that reading aloud imparts; her memory bank will be flooded with my voice whenever she thinks of the stories we have shared.
But there are challenges she will face in this world. I ache to think of her days without my guidance and protection – so much it takes my breath away and often steals my sleep.
Yes, there are nets in place for her. Will they be adequate? I do not know. Yes, there are funds put aside for her. Will that be enough? I do not know. Can anything replace the good and loving counsel of a mother? No, probably not. There are many broken hearts in this world because of this sad universal truth. Simply, it is worse when you leave behind a child with a disability; their road is harder and more uncertain.
Bella and I talk about the fact that in order to live on Earth you must agree to die. It is written into the contract. She asks me why this is so, and I say, “Don’t ask me, it was like this when I got here.” Earth is a special place, so it is probably worth it, but we have some redesign ideas we would like God to consider the next time he sets things up.
Window licker is British slang for a mentally handicapped person. Bella had many oddities when she was young, things we believed she would outgrow with time, with the right schools, with the right programs, the right books, the right experiences, the right teachers… It wasn’t until she was 13 that she was formally diagnosed with atypical autism and intellectual disability.
Diagnoses with big implications can be frightening for parents. Perhaps that is why she was diagnosed so late. Even trained professionals wanted to keep her in the lesser categories of “specific learning disorder” a catch-all that more or less means, we don’t know what is wrong, but she is not learning at the typical rate.
There is a quote by Angelita Lim, “I saw that you were perfect and I loved you. Then I saw that you were not perfect and I loved you even more.” I have always known that this world is not good enough for my perfect child. I have felt that it is my personal mission to make this world better and more worthy of her and others like her. You double down on your promises when your child has special needs.
So I do my bit and pray that others will do the same and it will come together – this better world for all.
Truth be told, Bella’s path has been unfolding beautifully. We found a school where she is celebrated for who she is and this has helped tremendously to make me excited for her future. She has so many kind people surrounding her. I am beginning to trust that her own light will protect her.
And in numerous ways the world is becoming more worthy of her. Over spring break she attended the inaugural Autism in Entertainment Conference – a meeting focused on employment in the entertainment industry for people on the spectrum. Bella met a rep from Disney and another from Nickelodeon – both kind professionals who took the time to listen to her pitch for the Rainbow-Girls project and give her solid direction about how to take things to the next level.
So we have a new map and new enthusiasm and very big plans for the future. We are looking through a different window now. It’s a window of opportunity and hope.