“ Can I die, Mom?” my daughter Zoe asks. She is standing in her walker, pausing, with one hand on her hip, in a perfect petulant tween pose. Her hair, middle school trendy, straight and long, flows over one shoulder onto the front of her graphic t-shirt. I take all of this in, how good she looks as Zoe’s eyes meet mine. She is searching my face as if this is an easy question and the answer should be floating through the air, on it’s way back to her by now. Why is she is asking me this? I wonder. Why now?.
Zoe has been on the same daily medicines for years, and for the most part, her care has not changed. “ Well.. I begin..” and I move closer to her, tossing my dishtowel down on the counter behind me. I am leaning into her now, just inches her face. I can see the way her eyes have filled with tears. Clarity is all mine now. Her tears tells me how to answer, how careful I must be. How I will find a way to be honest yet, protect her from more hurt and worry, because this is real, this is us, this is love.
It was a Doctor that first taught me this lesson. I sat in his office, my 6 foot tall body cramped and folded onto a child’s bench. This is how we always sit Zoe and I, side by side as the doctor examines her. “ We tell our patients as much as they are ready to know” our doctor once told me. “ Ready to know.. “ I mumbled.. unsure. But with more years of mothering came more knowledge too. When Zoe was in preschool this meant explaining to Zoe “ your walker helps steady your tired legs”, an explanation that evolved over the years.” Follow the cues”, the doctor said that day. “The person asking the question will always show you how much they are ready to hear”. Talking about the future with someone, answering the difficult questions Zoe’s big sister sometimes asks, I have learned to watch and listen first. Through tears, anxious faces and scattered half questions, I always find my answers, because this is real, this is us, this is love.
It is bedtime when Zoe’s big sister calls me in. She is tired and unwell, and sick of sometimes not feeling so great. She is my “ typical” child, less affected than Zoe, yet diagnosed with the same metabolic disorder. She is a teen now, and she rarely holds back, she is an achiever. We have raised her to be this way. Compared to her little sister, she seems so typical and so there I was that night, unprepared for her truths . Her tears come fast. “ I am tired of being so tired” she says, “ and that I can’t do as much as my friends..” and so we start talking about what she can do and how we can help her feel better. The words her father said to her at dinner that night, come to mind “ She is on her way, he says- she will do great things.” I repeat this to her again, and I see in the half light, the way she smiles. I feel her sigh, as she lays against me. Her body now almost as long as mine, laying now like she did so often as an infant, her head against my chest, her long curls masking her face. This first daughter of mine, I would do anything for- this is real, this is us, this is love.
Zoe is laying in bed, and just when I think she is dozing.. she asks me for a hug. I gather her in my arms and look into her eyes, are you okay ? I question. In answer, she sniffs a bit and my fingers go to her cheeks and softly wipe away the wetness. She tells me about how hard her work is at school, and how she worries she is not getting better. She is comparing herself to her classmates- she questions why they are advancing faster in their work and she is so slow. “ We are so proud of you ..” I begin to say. In the middle there is praise and more praise, I end with the promise that we are so proud of her always doing her best. This belief in her ability satisfies her into sleep because this is real, this is us, this is love.
Hours later, Zoe’s father comes to find me. I have fallen into a deep sleep in my daughters bed. He has awakened alone in our bed, he is restless and he too, needs me by his side to soothe him back to sleep. He first nudges me then gently takes my hand guiding me out of the dark room, reclaiming me as his own. I slide into bed beside him, at peace where I am meant to be, at home with his arm around my waist- this is us, this is real, this is love.