Like most parents, I anticipated that the birth of my second child would be a time of celebration and joy. But this happiness was almost immediately shattered when the doctors informed us that our daughter suffered from a serious and inoperable heart malformation and that she would not survive childhood. Because she lacked a pulmonary artery (which brings blood to the lungs for oxygenation) her heart had to pump an astonishing 120 beats per minute to oxygenate her body while at rest. You cannot imagine the debilitating effects upon her physical health and her mental development as well. By age 2, Mariepier had received a secondary diagnosis of autism. She did not speak; she did not smile at us or express affection in any way. She lived encapsulated in her own little world, as if every ounce of her fragile energy was needed simply to sustain the beating of her heart.
Frightened of her death and depressed about my disappointed dreams, I withdrew too. I became a provider of services, making sure Mariepier received food, clothing and medical attention. But emotionally I shut her out, believing that this decision would ultimately make her early death more easy to bear. Yet I was haunted by guilt and self-judgment for my inability to fully love my own child.
When Mariepier was nine, I learned about the work of Barry and Samahria Kaufman and The Option Institute. My wife and I decided to participate in a Son-Rise Programthere, along with Mariepier, hoping to find peace and acceptance in the face of this tragedy. In just four weeks our lives were profoundly and permanently transformed. For the first time I was able to face my fears of Mariepier’s death, I realized that I was depriving myself of love for the little girl who was with me now, as protection against her future absence. I decided that I did not need this protection any longer. And with that decision, a miracle happened inside of me. I was able to be present with my special daughter, celebrating her life exactly ‘as is’ and recognizing her unique beauty. I fell in love with my child for the first time. My fear, my guilt, my disappointment dissolved, healed by my new found acceptance.
For the next two years, we built a bridge of love and trust with Mariepier. We lavished her with affection, celebrating each day the fact that she was still with us. We cherished each moment. And although she continued to deteriorate physically, she responded to our love with an extraordinary surge in nonverbal communication. She became attentive, affectionate, so expressive in face and gesture.
During this time we continued daily to make use of the tools we had learned at The Option Institute. And when new concerns or fears arose, we made use of the Institute staff to help us sustain our loving and accepting attitude.
Shortly before Mariepier’s 12th birthday, her physical condition worsened dramatically. The cardiologist told us that she would not live much longer. Although I had anticipated hearing this news for eleven years, I was still unprepared for it.
Soon after hearing this, I had the opportunity to speak with Barry Kaufman, who I’d come to know affectionately as Bears. As Bears and I spoke, my tears of loss and disbelief slowly gave way to a sense of gratitude – gratitude that I had been able at last to reach out to my little girl, gratitude for the wonder of these two magnificent years, gratitude for all the ways I had learned and grown because she was in my life. And in that moment, I knew that when the time came, I could let her go.
Weeks later we returned from a Sunday family outing. Mariepier had seemed more fatigued than usual. I took her in my arms and carried her into the house, laying her gently in her bed. She cried softly as her breathing became very difficult. Her big eyes watched me intently as I spoke to her. Suddenly her expression changed to one of surprise when her breathing and crying stopped abruptly. She looked right into my eyes as if to ask me what was happening. I held her hand and stroked her face, feeling an overwhelming sense of love and acceptance. I knew there was nothing else anyone could do to intervene. She folded her arms over her chest and pumped them three times, as if she was making a last ditch effort at reenergizing her own heart. I told her how much I loved her. Suddenly she let out a breath and then became completely still. That was it. She just let go. In twelve years I had never seen such peacefulness in my daughter’s face. For a long time I sat beside her, stroking her hair. My own sense of peace was profound. I knew she would always be in my heart. I knew I could celebrate her life instead of mourning her death.
For me this experience was a miracle. Had I not learned at The Option Institute that inner peace and love are a choice, I would have undoubtedly left Mariepier to face death alone in her room, so consumed by my own fears that I’d have been incapable of reaching out to her with love in her most difficult moment. I’d have lived my own life bitter and angry at the briefness of her life and guilty over my failure to love her enough.
Instead I had come to know that I could choose happiness and inner peace; and in making that choice, I remained a source of love, strength and support for my child. I cannot describe my gratitude.
Daniel Ladouceur, Business Consultant, Quebec