Forever 14

I was facilitating a workshop for the Ontario Association of Children's Rehabilitation Services a few weeks ago and I met a warm, wise woman named Mary Herlick. Mary shared with the group that she had lost her son Eddie (above) last year. Mary is still involved in trying to improve life for other families of children with disabilities. I asked her to share with us coping strategies for parents who have lost a child. I'm very grateful for the beautiful piece she's written below. Louise

By Mary Herlick

My son Eddie (above) had dark hair, long curled eyelashes, and brown eyes. He also lived with cerebral palsy, communicated with facial expressions, had a G-tube, and used a wheelchair. Eddie had frequent admissions to hospital for continuous dystonic muscle spasms. He fought so hard, but with no treatment options left, Eddie died on October 13, 2009. Eddie died quietly, in hospital, surrounded by his family. He was 14 years old – now forever 14. My husband, Eddie’s twin sister and I miss him terribly.

The emotions a mother has when her child dies are enormous: overwhelming sadness, shock, numbness, anger, unfairness. Each parent’s journey with grief is individual. No two parents have the same feelings or reactions. I will share with you my journey of how I’m learning to move from days filled with my son’s presence to days filled with his memory.

As the early days passed, the enormity of my loss became real. I remember waking up days after the funeral, feeling fully rested, and thinking: ‘How am I going to live without Eddie?’ I thought back to when Eddie was three months old and diagnosed with cerebral palsy. I remembered the shock and sadness I felt then, the weeks of crying to mourn the loss of the child who was not going to have a typical life, the changed plans, and the adjustments. Knowing that I had experienced deep pain once – and that life with Eddie had been rewarding and filled with joy – I knew I could learn to accept this change in plans once again.

I have found it very important to really listen to my feelings. I try to stay in the present moment. I do what I feel like doing. I don’t worry about what others think I should be doing or not doing at any given moment. In the early months after my son died, I told my closest friends I needed to be with them. They made that happen. I have wonderful friends who listened, cried, hugged and reached out to me. When I feel down, I let them know and they lend an ear, an immediate email, or a card comes my way. My extended family has supported me: they call and ask how I’m doing and they mention Eddie’s name. How important it is to me that they mention Eddie or write his name in a card!

There is so much time in a day and a night to fill. Many nights I have trouble sleeping. What helps me? Some nights a warm cup of milk, going downstairs to sit quietly, or melatonin (a natural supplement) just before sleep. And some nights nothing helps and I stay awake all night. That’s okay because I know that I am doing the best I can.

As the days turn into months, I feel stronger and I feel hopeful. I have more good days than not. On my good days when I have lots of energy I do the usual household tasks. I cook big batches of favourite recipes and freeze the extras. I take long walks, enjoying the fresh air, taking in the beauty of nature, and listening to the sounds around me. I am able to set my own hours so I work longer hours on these days. I think about all that my son endured, how he persevered through it all, and how I am thankful to God that he no longer has to suffer. I also gently sort through my son’s belongings, a very hard but meaningful task for me, feeling each item, and carefully deciding to what organization or to whom I want to donate it.

How do I manage on the down days? I do just what I have to do to survive. I work but only as much as I need to, I breathe (long, deep breaths), I cry, I light a candle, I pray, I sit outside, I call a friend, I listen to music, I remember.

If you are reading this and you, too, are bereaved, here are a few tips I have learned from others:

• be kind to yourself and honour your feelings (I believe this is the most important).

• take care of yourself – eat nutritious food, drink lots of water, get rest, exercise.

• crying is good for those who can cry. Not crying is normal and okay too.

• it is a myth that time heals. The truth is that acknowledging your feelings and working through your grief allows healing.

• prepare ahead of time what you might do on your child’s anniversary or during the holidays (I learned the hard way that not having a plan resulted in a very anguished day).

• anticipate what you will say when asked the question, “How many children do you have?” I have said different things in different situations: “I have one living child” and “I have one child and my other child died” are examples. My favourite is: “I am the mother of two children, a daughter who is 15 and a son who lived to be 14.”

• when introducing yourself to others, place your hand over your heart, take a deep breath and tell those gathered the name of your child who died.

• keep a notebook handy to write down strategies that help you, which you can pull out when you are having a hard day.

For those of you who are newly bereaved, slowly you will find your way too on this new journey. When you are ready, I highly recommend contacting Bereaved Families of Ontario. I have found the resource library, the newsletters, and the presentations at my local chapter meetings of particular benefit to me. Since the worst has already happened – my child has died – I have confidence in myself to keep trying to heal. I wish you the courage to do the same.