My Daughter Ellen – By Barbara Sheppard

My Daughter Ellen

By Barbara Sheppard

Ellen Gunderson – Photo by Matt Rawlins

My daughter Ellen was born very tiny and very fragile. She had many brushes with death. Somehow, I felt solely responsible for keeping her alive and felt that if only I did all the right things, she would heal. She would develop into a so-called ‘normal’ little girl.

I spent years putting her through her paces – teaching her to swallow, to make eye contact, to roll over, to sit up, and to stand. But I failed to teach her to speak, to use the toilet, or to wash her face. I could not replace the genes missing from every cell in her body. And I could not accept that my love was the only kind of healing she ever really needed from me. We managed one day and one sleepless night at a time. I sank deeper and deeper into exhaustion and despair.

It was my sense of utter helplessness that at last brought me to my knees. I could no longer sustain the illusion that Ellen and I could manage without God’s help, that I could somehow be her saviour. My raw weakness, surrendered to God, became a blessing. In our neediness, we were befriended by a community called L’Arche in which people with and without disabilities live together. It’s a community that not only knows, but witnesses, that we don’t need to be strong or productive to be loving and valuable. That there are deeper truths about being a full human being. That every one of us is both beautiful and fragile. And that in learning to accept and value our own brokenness and the brokenness of others, we become healed. We become wounded lovers, healers of each other.

Ellen and Barbara – Photo by Jack Howard

The Light That Casts Out Fear

God is the light inside of everything. We, too, in all of our littleness and ordinariness, are God’s light in the world. We, too, are called to shine our light into broken places. My daughter Ellen, for instance, was a tiny woman who had a severe developmental disability. She was a silent person who was aware of everything going on around her. Though quite tiny, Ellen took up a lot of space. She was small but shone a strong light.

I remember taking Ellen to an appointment with her neurologist. First, we were interviewed by a resident physician who had never met Ellen. He was tense and stiff, asking me questions about her as though she wasn’t in the room and nervously avoiding eye contact with her. Meanwhile, Ellen stood directly across the small room from him, silently watching, taking in his anxiety. Then she began to walk towards him. The resident blurted out anxiously, “What does she want? What is she going to do?” I said, “She wants to kiss your hand.” And, with a deep chuckle, she did just that. Finally, the resident relaxed. Usually, it’s the doctor who is called to ease the patient’s fears. Yet we, in our ordinariness and in our littleness, can all shine a light that casts out fear.

Compassionate Love

My daughter Ellen was born with a developmental disability and other medical challenges. Yet even as an adult, tiny as she was, she showed a desperate kind of physical strength when she became frightened. Part of Ellen’s medical routine was an annual liver biopsy. For anyone else, this is a simple procedure done with a local anesthetic. But because Ellen couldn`t understand what was happening and would become quite frightened, she needed a general anesthetic.  Her story was something of a legend at the hospital — the horrendous experience this annual procedure was for her and everyone else. Three of us would try to calm her and hold her still.  While she screamed and kicked, the anaesthetist would struggle to give her a sedative.

But then, one year we had a different kind of experience. An anesthesiologist came out to where we stood waiting in the hall, to meet Ellen and put her at ease.  He crouched on the floor in front of her so they could gaze eye to eye. He took her hand in in his. “Hello, Ellen, my name is Brendan. Oh, I’m sorry.  Are my fingers cold? Let’s see your pretty arms,” All the while, he was running his fingers up and down her arms, checking her veins. He gently murmured to her, in his charming Irish accent, flirting a bit.  And they connected. She was delighted with him. She kissed the top of his hand and chuckled with the pleasure of his attention. Then she followed him happily toward the operating room to see his “television” (a monitor). When the two of them reached the operating table, he squatted down in front of her, face to face, smiling. He injected the anesthetic into her line, chatting away to hold her attention. Then, when she swooned, he caught her in in his arms and gently lifted her up onto the operating table. Isn’t this how God seduces us?

Laughter and Ease

I remember attending a retreat with Ellen many years ago when she was quite young. It was a retreat led by Henri Nouwen, the pastor for L’Arche Daybreak, who’d asked me to bring her along so others might be introduced to a person with developmental disabilities. We began in a circle with Henri seated among us. He tried to engage us all in sharing and talking across the circle, to help us relax and engage with each other. But everyone remained quite focused on him, and we were all a little nervous.

Ellen slid down from my lap and scooted along on her bottom on the carpet to the next person in the circle and untied his shoelaces. Then she scooted to the next person and untied her shoelaces. Then the next, and the next, until she’d gone around the whole circle and everyone’s shoelaces were untied. When she arrived back at my feet, she reached up to be lifted back on to my lap. Only then did the retreat begin – with laughter and ease.

Photo by Barbara Sheppard

The Meaning of Vigil

I’m going to tell one more story about my daughter Ellen. This story is about the meaning of vigil. Ellen was missing some genes in her DNA. This was such a gift because it meant she could connect with herself and others in a way most of us spend our lives trying to discover. She lacked the barriers most of us have, and so she didn’t edit herself at all.  She lived with an open heart.

Ellen pulled everyone into the moment with her and inspired a lot of people. One of them is a woman named Carol, with whom Ellen lived for many years in her L’Arche home. Carol wrote these words to Ellen after her death, “You had the honesty to be fragile, and in that fragility lived fierce strength…. You entered into experience whole-heartedly…You called us to presence… Your eyes penetrated us, until there was nothing to do but drop our tasks and worries and fears, and meet your eyes.”

Ellen loved life, in spite of, or maybe because of, chronic pain and disability. Forced by illness into a hospital bed, she resisted dying with all her strength – pulling out all her needles and tubes, scrambling to crawl out of her bed with her final surge of energy before she died. She had spent many years holding others, being present to others, and now they came to hold her and be present to her. During all of her 6 weeks in hospital, a crowd of people came to take turns waiting with her in vigil. All these people, all this love, waiting along with her. Bearing the load with her. Bearing her to the door of her rebirth in resurrection. Bearing each other up in the mystery. This is the meaning of ‘vigil’.

Carol wrote, “We sat with you while you were dying and thanked you for your teaching. Some of us thanked you with a kiss on your forehead. Some of us thanked you with laughter and song. Some of us thanked you with silence and prayer. Some of us thanked you by telling you that we will always be with you. The whole community gathered around you, to share our love for you and announce the gift of you. You were never alone.”

Ellen died at the same time in the early morning that she usually woke up. As she died, we know she awoke on the other side of the veil to a bright new day. A few weeks later, I dreamt of Ellen, laughing loudly and joyously. I felt she wanted me to know her joy in her resurrection.