It is past 8 o’clock at night, and my ten year old should have been asleep a half hour ago. But she isn’t, she had to finish her book, have another snack, get a drink of water and now she is over tired. Her face is pale, her body is tired, and the aches and pains of a busy day have caught up with her. As I check on her one last time, dim her lights and prepare to kiss her goodnight.. I get a verbal recant of all that went wrong with her life that day, and all that my tired girl thought I was to blame for.. I get a litany of not so nice little girl words. Within minutes, I know she will be passed out from exhaustion. She has an ice pack wrapped around her leg, her baby blanket around her neck and her favorite stuffed animal tucked against her chest. I kiss her goodnight and let the words flutter and fall from the air. Choosing to hold them away from my heart that overflows with love for her. I shush her and tell her tomorrow will be a great day. This is just a minute of her day, her day that I know, was a good day overall. A day that just should have ended earlier than it has. In the morning, she will barely remember this onslaught of tired emotions. She will find me in the morning, having awakened rested with a smile- her heart and body recharged.
Both of my girls have a metabolic disorder that prevents their bodies from making energy correctly. My younger daughter Zoe is more affected, my older daughter Olivia looking typical in every way- she has asthma, renal tubular acidosis, some GI issues, she battles anxiety – and her fast brain and active body that just doesn’t know when to quit. Just doesn’t know when her body is running on empty, doesn’t know when to stop. So life for both of them, is a juggling act, constantly weighing energy reserves, balancing activities with quality of life.
I have given up trying to get it perfect, and as I go further down this road I try to look at life as a collection of moments. A moment doesn’t have to be perfect, it will pass and there will be another right behind it. Another chance to get it right, make it special, do it better.
O has been learning a lot about her sister’s special needs lately. She has been forced to learn about her sister’s limitations as she herself grows older, and has to understand why we just can’t ” stop really quick on the way home from school” to do whatever it is she wants to do. Her little sister is too tired, and lately hasn’t been making through full days at school. Her sister is her playmate, her friend, and sometimes the one I know she blames for stealing too much attention, or holding her back. But when they are apart, she is always happy to see her, greeting her with affection. Often asking me to wait when we pull up to Zoe’s school, because she wants to meet her little sister at the sidewalk when Zoe comes out ahead of her class. Cruising at high speed in her pink power wheelchair, grinning and elated when she sees it is Olivia there to meet her, Olivia thrilled to see her.
Yesterday was a Saturday full of moments. It was the first time Zoe went to the special needs cheer team practice. It was the first time she met these girls, all with different faces, different smiles, different disabilities. Almost every girl said hello to her, as Zoe hung back watching the routine, reluctant to participate. But she noticed almost everything. From the first moment, when she told me that she could not jump like the other girls were doing. She told me she liked the pom- poms. She told me the music was loud, yet I saw her move a bit to the beat. She saw the girl in the wheelchair and how they moved her around to the music, how she was a part of the routine. What she did not see is her sister’s anxiety mounting as O took in all of these girls and tried to process all of their disabilities and how her sister fit into their group. She wanted her sister to participate, but I know she also wanted her to be different. I could see in her face that she wanted to protect her too, that she wished that her sister didn’t fit in to this group of girls with multiple disabilities. But her sister did.
Zoe saw the acceptance, the fun the girls were having, It was her own worry about her performance abilities that held her back. Something I am sure she will get over. Zoe did not see my tears, did not see my face crumple, did not feel the breath go out of me as the girls on the mat, moved the cheerleader in the wheelchair around and through the maze of their routine, making her part of the performance. Accepting her , celebrating her as the girl shrieked with spontaneous joy.
Later that afternoon, as Zoe rested, Olivia and I talked about all she saw and felt, and as I imagined, it was overwhelming. The rain was falling outside and O wanted to put the conversation to rest for a while. She looked out the window at the drizzling rain, and then at me wistfully, ” I wish we could go to the library now, on a day like this I could spend the whole day inside there, or just reading.. ” suddenly I was ten again too, remembering how I dragged big bags of books home, and spent day’s escaping into my stories. So we went, O and I . As we do a few days a week. We went in the pouring rain, looking for a bit of relief from the sobering thoughts that had filled our minds the hour before.
And then later it was dinner time, and we were gathered around the table. I was beginning with our nightly medicine ritual, when my husband called to us from the patio. ” Hurry, he called.. you have to come see this.. ” and so we went , Olivia running first as I walked Zoe, hand over hand , steadying her uneven gait as I led her out onto the back patio to see the double rainbow painting the desert sky.
And as we stood there, I thought about how each moment comes and goes, and what living in the moment really means. How the painful moments pass and give way to new moments like this, moments of simple beauty and double rainbows, moments of kindness and joy- a cheerleader moving in her wheelchair- Zoe exchanging smiles with the other girls today, how it’s moments like these that are marked in our memory.