Standing first in Zoe’s room, I watch her sleep. Almost six years old now, her body is long , like mine, and her father's. Her hair color is turning from a dirty blonde to a peachy blonde, if that makes any sense. The same copper penny color that claimed big sister Olivia’s hair color for so many years, seems to have gently washed over Zoe’s hair overnight. Her face is maturing, and I can see more of Olivia in her face each day. Her cheeks are flushed now , her skin bright pink in the low lighting of her room. She is facing me, hugging a snow white puppy dog and her blue baby blanket afghan. She looks content and I try to imagine what favorite thing she might be dreaming of; being at recess with her kindergarten friends, playing on the playground, free choice time in the classroom or maybe she is lost within the precious pretend world that she and her sister visit often.
Due to Zoe’s increased vision loss, without her glasses she does not see well. The other day , her glasses were off and I was sitting very close to her. “ Can you see Mommy’s face?” I asked, “ without your glasses?” “ No.” she began to answer.. “ But it’s okay Mommy, I know what you look like!!!” We both giggled at the simple truth of this. Zoe likes to have extra light in her room at night , I believe it helps her sort out the scary shadows from the familiar favorite objects that fill her room.
She sleeps better now, often through the night. She is tired each night from her full day in kindergarten. Her school day starts at 8, her morning filled with academics, her afternoons spent learning Braille, and doing speech, physical and occupational therapies. It is a treat for her to participate in the fun stuff like classroom events, library, and playground. She gets too have free choice time everyday, and never complains about the work. Everything she does is with determination and a smile on her face. She has mastered her pink power wheelchair, at school and in our community, and she has many friends at school. Although her last MRI showed that she had suffered a stroke like episode, she continues to progress academically and cognitively- it is only her energy level and ataxia that seems to have been affected, so we balance her days with great care- allowing her to live life fully yet not exhaust herself. She begins to stir now in her bed and I imagine she is dreaming.
I move into Olivia’s room and find that she is upside down, her head at the foot of her bed, resting upon the pile of blankets as if they were a pillow. In the dark I can make out her long, lean body and I gently try to move her around so I can cover her for the night. " Will you lay with me, Mommy?" she asks sleepily. I pull her to me, knowing that if I gather her in for quick hug , she will be satisfied and will fall back to sleep again.
She is much happier these days. She is seven now, and her escalating anxiousness is practically gone, her clingy nature replaced by affection and a silliness that was hiding beneath, just waiting to be discovered. She takes her kidney medicine each day, and now she takes a new medicine too. The anxiety disorder is a result of the same mitochondrial disease that affects Zoe. This new medicine has erased her panic attacks and worry, the anxiety she was suffering from , that ravaged her tummy and kept her from the innocent, joyous happiness that all little 7 year old girls deserve. She rarely wakes now throughout the night, and in the morning begins each new day with enthusiasm and excitement.
In the folds of her blanket is a Cam Jansen paperback. She reads in the morning and into the bedtime hour too. She tells me she is good at solving the mysteries, her favorite, figuring out “ who did it.” She insists we visit the library at least once a week, and for this, I am thrilled, and decidedly blessed. I tuck her in gently and notice that one of Zoe’s dolls is in her bed. The two of them trade off their favorite possessions, sharing them equally, and bestowing them upon each other as special gifts. The other day Zoe was following O down the hall, using her little old lady aluminum walker, singing “ We are sisters, We work together, We make up one big family…”
Their bedroom doors closed, I turn out the rest of the lights and head to my bedroom to find my husband, also tucked into bed and waiting for me. “ Are the girls okay?” he asks. “ Just fine” I answer . His voice is gentle and full of affection.
Tomorrow will bring a new day. Deadlines for work. Medicines to order/ pick up, appointments at school and more to schedule with doctors, the same insurance arguments, extra snacks, milk, medicines and pull-ups to pack for kindergarten, but for now I don’t think about the crowded calendar that hangs on my kitchen wall, or the loads of laundry waiting to be washed.
I crawl into bed and settle into the curve of my husbands body, I wait for the warmth of his arm to wrap around me. I think about the contented sleep the girls are enjoying down the hall and smiling myself, I close my eyes.