Sometimes I think about how my other kids have been affected by having a sibling with multiple, severe disabilities and chronic health challenges. On one hand, I have noticed how their sister, Alisha, is simply their sister. My son Kodey, five years old at the time, kept staring at a person who had Down’s Syndrome while we sat in a waiting room before a physician appointment. I told him to say something kind or to stop staring. He averted his eyes rather than speak to a stranger. I asked him later how he would feel if someone was staring at his sister, who had recently acquired a wheelchair and hearing aids. Puzzled, he asked, “Why would anyone stare at her?”
When they were all little, I’d read a story before bed. We would gather in the family room, everyone trying to find their comfy spot on the carpet, Alisha laying long, horizontally on her back gazing at us circling her. She would sometimes let loose some raucous laughs making it hard for the other kids to hear me read or she would get excited to have them so close to her that her legs would start kicking, pummeling their small frames. Complaints would ensue, “Mommy, Alisha’s kicking me,” or “ALISHA! I can’t hear”.
Then there are times I’ve sensed sadness over the relationship they missed out on with Alisha. It’s evident they love their sister who has never talked to them, ran with them, fought with them, cuddled with them. Their love is not without an empty place though that longs for a deeper emotional connection.
I became certified last summer in a grief recovery program. The program helps participants take action-steps to recover from the emotional pain caused through loss. One evening, I talked with my husband and children about what I had discovered in the class. I asked each person to name two losses they had experienced. My son Caleb, twelve years of age, tentatively asked, “Would Alisha be a loss for me?”To be honest, of our four children, I had not considered my boys feeling that their relationship to their sister was lacking. I had felt pain for my daughter, Hannah, who is three years younger than Alisha. I’ve considered all the sister bonding she longed for, but the boys? No, it never occurred to me.“Yes. It is definitely a loss for you,” I boldly affirmed.
Our family has focused on the gift that Alisha is. Her contentment and bursts of sheer joy have been contagious. We have been inspired by her endurance to fight for life. We have grown personally in patience and acceptance of unwanted circumstances. Yes. We have gratitude nailed.
But we do not talk about what we do not have in the relationship.
Not talking about it does not make it not there. The longing for more sits silent. It’s never too late to begin healing from loss. As a family, we are beginning to acknowledge the sad and disappointing emotions and identify the parts that we long for in the relationship to our sweet girl, Alisha. Letting the reality of the emotional pain, be as much a part of our story as the gratitude is another gift we are experiencing.