A True Sister Relationship

Yesterday was a day for my sister, Mary Beth. Acting as her guardian, I attended her annual review. I have another biological sister, Diane, who I travel with, shop with, laugh with, and reminisce, and support each other in many ways. I have soul sisters who enjoy what I enjoy, see and experience life similar to me, sharing each others life journey as chosen family. These sister/female relationships are important to me, helping me to see and understand myself, challenging me to grow, offering the welcome place that needs no reintroduction when there has been absence.

My relationship with Mary Beth is different in that she does not have verbal language or adequate sign language to engage in conversation. In her 55 years of life she has remained at mental age 3 – 4 years old. She was born with an extra chromosome which gave her the label and diagnoses, Down Syndrome. In small town North Dakota in 1962, there were no support services for her or our mother and our family. Mary missed out on the early stimulation that is now begun immediately after birth. Our mother, father and us 4 children missed out on education, emotional and psychological support, peers and mentors who understood the challenges ahead. The family felt and experienced the many emotions and changes this birth brought without the guidance, supportive services and compassion that was needed and our parents navigated the waters alone through some thoughtless hurtful comments made by people who did not know what else to offer.

Throughout all of this, Mary has made herself known through her wants and needs and her personality shines. Sweet is a common word used to describe Mary. A sweetness of being that is at her essence. She is very independent minded, focused, determined, creative, and unique in her style. For years Mary loved to buy jewelry and would daily wear almost every piece.  Mary loves to work and stay busy. She will be the one at her day program who with a sensibility of hospitality, or control, will take everyone’s coats and hang them up, take everyone’s lunches and put them where they belong. Mary loves to exercise, especially dance. She loves going out, shopping, eating, and riding in the car. Mary is an artist at heart. She seeks out art materials, has had caregivers who help direct her with painting and creating. Drawing and coloring are soothing to her and hold a special time for her each day. When she was small she used to sit on the floor in the bathroom while I was dressing, doing hair and make up. Mary is a “girly girl” loving to have her hair, nails, facial, any primping will do. Mary has had a long time boyfriend named Bob. He is very attentive to her. At socials he will come get her to dance, until Mary wanders away distracted by balloons or pop, then Bob will find her a bit later for more dancing. Every year they attend prom together.

Mary has a new challenge that has been growing over the years and is the added layer of Alzheimers. Sometimes in the day, her sweetness is hard to find. She is not sleeping well. She now is eating all pureed food as she cannot tolerate texture. When frustrated she will lash out physically or drop to the ground. An hour later, she will be back to Mary as we know her. She has forgotten to wear her jewelry. She lives in a group home and I am eternally grateful for the love, care, understanding and determination of her caregivers to keep her quality of life to what she knows it to be and work with her to soothe and comfort.

This is a hard piece to write as there are so many feelings surrounding this relationship. I can easily name some of them, grief, guilt, joy, love, compassion, ambivalence, affection, admiration, irritation and at times I have felt disgust at some of the behaviors. And, did I say guilt? It is a relationship where enough never seems enough. There is always more to be met. These feelings rise and fall. There is no justification of the feelings, no rhyme or reason, they are just present when they are present. My own acceptance of the feelings makes all the difference. I don’t own any one feeling in this relationship. They are all present and all matter and do not define me or Mary or the relationship. They simply rise and fall.

When I feel guilt especially, I do a reality check and breathe it through. I can no longer enjoy bringing Mary Beth home for over nights as it is too far out of her daily routine. It is too challenging for her and for me. I miss the Mary who was not driven by her compulsions, who was not affected by all the medications. And yet, I know that the change we live through is the nature of life. Everything is change. We change and strive for adaptation. Our bodies and minds age and we seek ways of comfort and normalcy. I do not long for the sweet days when my children were little; I delight in their growth into their mature life. I realize I can let go of the longing for the Mary of the past and celebrate the life she is striving to live. I continue to see the sweetness, continue to hold with compassion this sister relationship that has been part of my life since I was 12 and which continues to grow in its own complexity as every sister and sister/friend relationship does.

Mary offers me the same mirror of relationship as does my sister, Diane, and my adopted sisters as well. We are all here to help each other in our journey of life navigating the waters as spirits in a human body. That is what I offer to Mary Beth and that is what Mary Beth offers to me in return, as we each challenge each other to show up in what ever way we are able, to a true sister relationship.


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