Finding Your Way

The Voyage of Children with Special Needs Siblings

Merle and I both grew up in a family with dynamic sibling relationships and desired the same for our girls. We grew concerned about this in the later part of my pregnancy as there were so many unanswered questions about Catherine’s abilities and we wanted both of them to have the experiences we shared with our siblings.

Just a couple of days before Catherine’s birth a dear friend threw me a wonderful baby shower. I later picked Christina up from a play date and we made our way home. She climbed into the car and quickly assessed the gifts in the back seat and asked, “Are all thirteen gifts for Catherine?” I assured her that she too would receive gifts from Santa in just a few days. At that moment I smiled and realized that sibling rivalry was alive and well.

A sibling of a special needs child is sometimes confused or unclear about the circumstances, but still needs support to understand their role. Here are three certainties that served us well at the start of our journey:

Celebrate their relationship.

When Catherine was just a few weeks old, I casually asked Christina to go get her sister’s diaper. She stopped and proudly said “I’ve been waiting for you to say that. I actually have a little sister.” I can still see her confident smile as she took ownership as Catherine’s big sister. To this day Catherine affectionately calls her Sissy.

Cultivate the needs for all your children.

At the peak of Catherine’s illness, our family pediatrician of seven years pulled us aside to talk about the welfare of both girls. I remember her saying, “This baby is sick and does not know it, but this baby (pointing to Christina) knows her sister is sick.  The doctors will do what’s needed for Catherine, but you need to make sure Christina is whole and not pushed aside.”  This resonated with us as she pointed out the importance of a broad support system. Both grandmothers visited frequently to ensure we could manage the needs of both girls. We also had dear friends who pitched in to help. This allowed us to take extra time one on one with both children.

Communicate openly (as best you can) about the situation  

I remember an emergency where the paramedics had to rush Catherine to the hospital and I joined her in the ambulance. Merle later explained how Christina fell into his arms flushed with tears and asked “why is she so sick like this and is she going to die.” He held her close, let her cry and bravely told her the doctors were doing everything they could to keep her alive. She could not fully comprehend Catherine’s challenges, but felt the assurances from her daddy’s arms.

The rivalry was the start of a relationship that grew (still growing) organically between two sisters and it still makes us smile. We simply needed to steady the course to allow them space to grow with each other. The concerns we held are now a distant memory as we watch our girls navigate through their voyage as siblings.

  1. Carmen Webb

    November 16th, 2018 at 5:50 am

    Beautiful.

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