A better way tomorrow

As the 25th anniversary of the death of my daughter, Natalie, approached this past November, my eldest daughter Katie suggested that I write about the ever-changing look of my grief and what, if anything, I would have done differently. 

The incident eventually faded from my memory, and the grief that I felt for my grandmother’s sake loosened its grip.

Our fifth child, Natalie, was born in June of 1988. At 12 days old Natalie was diagnosed with CdLS and we were advised to prepare for her death due to “failure to thrive.” My husband and I were devastated and the thought of losing our child completely overshadowed the CdLS diagnosis. I found it impossible to make sense of a grief that came before the loss had occurred. Over the course of the next four weeks all I could do was hold my daughter, feed my daughter, and all she could do was sleep. At the end of that month Natalie began to gain weight, wake more often and respond to her surroundings. 

The crisis had passed and the sorrow of almost losing my daughter faded from my memory and the grief that I felt loosened its grip. Natalie continued to thrive, but her petite, doll-like features took some people by surprise. She never learned to walk independently, so it became the norm for all of us to carry her and that created a bond that was both physical and spiritual. Over the next five years Natalie grew and reached the size of a two-year-old and the maturity of a one-year-old. As an infant she received home-based therapies and eventually preschool services. The help that we received, plus the support and information from the CdLS newsletter, Reaching Out, was amazing. Life was good and life made sense. 

That sense was shattered on November 8, 1993, when Natalie unexpectedly died of flu-like symptoms. I found myself and my family entering a realm that was frightening and impossible to navigate. 

I knew how much my children loved Natalie and how much they had to be hurting, but beyond the everyday routine of nurturing them, I know I failed to help them with their own grief. There was a stillness that descended on our family that was frequently interrupted by our 2-year-old daughter, Olivia, asking for her sister. I would console her until she fell asleep in my arms. Grief spares no one. It was piercing moments like that when I felt my sorrow becoming irrational. My grief became frantic and I was desperate to calm myself. Winter had come which only contributed to new feelings of isolation. Evenings were the most difficult time for me. After the dishes were cleaned, children bathed and homework done, we would gather in the living room. It was then that I found myself counting the heads of my children and willing the number to be seven, but it was always six. It finally drove me out of the house, and I fled into the darkness of night. 

I quickly came to discover a peace outdoors, even in the brutal cold. I could cry in solitude, free of the worry that I felt when my children saw me cry. I could walk for miles and it was enough to help me sleep. When that was no longer enough of a challenge, I began running. In no time I was averaging nine miles every other night. For the next decade I relied on running as a coping mechanism. I can honestly say that those runs saved my life. 

They were a tremendous help, but over the years I have come to recognize that what would have been an even greater help was grief counseling. At the time of Natalie’s death, I had never heard of grief counseling. I have to assume that no one in my family or circle of friends had heard of it either, because it was never mentioned. I do believe that it would have helped my whole family, especially our children, who not only had to cope with their own sorrow, but who were also attempting to process my sorrow. I wanted to remain composed in front of my children, it just was not always possible, and one episode stands out in my memory and probably in their memories as well. 

I ran, wailing, to my bedroom, leaving the children to fend for themselves that night. My eldest daughter, Katie, who was only 12 years old, cleaned up the mess and helped her siblings find something to eat. The next day our eight year old daughter, Emily, came to me with a message that she had drawn on a large sheet of construction paper. In her 3rd grade hand she had written BETTER DAY TOMORROW along with a smiley face. I clung to that hopeful message, and I still have that drawing. That picture, along with mementos and keepsakes from all my children sits in a large treasure chest in the living room. 

I have three granddaughters whose middle names are in honor of their Aunt Natalie. Several of my children have been involved in fundraising and awareness efforts for the Foundation. My eldest daughter currently serves on the Board of Directors. I have wept at the love my children will always feel for their sister. I have wept remembering the profound grief we all endured after her death, but mercifully, profound grief is temporary, and eventually, it will loosen its grip. There came a time when I realized that I could awaken in the morning, feeling calm, and that I was no longer being tormented by irrational thoughts, fear, and frenetic activity.

Perhaps it was a calm that was born from sheer fatigue, because profound grief is exhausting. Whatever the cause, I welcomed it. The sensation of drowning was over and I felt myself slowly emerging from a grief that was lonely. I did not choose to remain alone in my sorrow. I simply did not know to whom I could turn for help. 

As universal as grief is to the human condition, it is also unique and intimate to each individual. There are people who understand this and respond to the call of helping others during times of profound loss. At the time of Natalie’s death, if I had it to do again, I would have entrusted my grief to a professional counselor. I would encourage any parent who has lost a child to seek professional services, whether it be counseling, support groups, or family services from the CdLS Foundation.