Friday, November 26, 2010

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.


This is profound and beautiful -- essential, I imagine for those of us who've lost a child, but important, too, for those of us who might know someone who has lost a child. Thank you for sharing your son with us and your journey.

Dearest Mary,

As I wholeheartedly read your words and gaze upoun the beautiful picture of Eddie, my heart and mind are filled with two infinite and inextinguishable truths. First, "Your son not only knew that he was loved, but as he did in life, will forever reciprocate this love with all that he has to give, as Eddie will truly never leave you."

Second, Although Eddie communicated through facial expressions, I believe that if he only had one chance to speak a few words, he would say, "Thank you for being my Mom; thank you for loving me."

Forever yours,

Matt Kamaratakis

Hi Mary,

I am so glad that you posted this article. You are a strength that I gather from everyday. I am so glad that I have met you and have you as part of my life. Eddie was so lucky to have you as a Mother and I am sure he is looking down at you and saying that is My Mom. My strength and joy. Hugs and Warm wishes.

Always her for you.


Hi Mary,
I am so glad I had the opportunity to meet you at the OACRS conference. You are a true inspiration to me. I find your article straight from the heart and so heartwarming to read. From the short time we had together over those few days, I know Eddie has one of the best moms that I know! I am looking forward to getting to know you better.
Take care my friend,
Nancy Rissanen

Hi Mary,

Thanks for sharing your story and such helpful insights. What a beautiful tribute to what you have learned by loving Eddie.

See you again soon.

Lisa Hawthornthwaite

Dear Mary
I sit here stifling sobs with tears streaming down my face. What a beautiful story. What strength and courage it must take for you to bare your soul, pen these words and put them out there, sharing with the world.
I also encourage others to connect with Bereaved Families of Ontario when the time feels right. The local chapter was extremely helpful to me in working through my grief after the loss of my first child many years ago.
Having a 10 year old with special needs and multiple chronic medical conditions (as well as a healthy young adult child), I live day to day with the knowledge that my youngest may be taken from me too soon. The words of wisdom you provide as you remember Eddie's life and also share some of your darkest days are a tonic to my soul. I'm so glad I have several friends (like you) who are always here for me now, and who will always be there because we are like minded and share the common bond of having been blessed by a precious child such as your beloved, Forever 14, Eddie.

I also read your posting with tears in my eyes. I lost my 25 year old son in 2008. There is not a day goes by I don't think of him. I know he had been through a lot and he also had a lot of joy in his 25 years. We were told we might get 6 months. i appreciate my friends who still say his name and I struggle some days on how to answer the question of how many kids I have. There has always been an awkwardness in response when I say my two sons have Cerebral Palsy and that they were not twins. I learned a lot about who my friends were, those who came and supported us. Those who will listen to my stories about Ryan and share how special he was and what he taught so many others about acceptance and his love of life. I also live with the fact that I have a younger son with the same disability and I wonder some days how long will we have. I have come to a point of acceptance for some things while others will linger and maybe best not to know the answer as it is important to make each day count. I have met with other moms here in the city who have also lost children and we are able to share how we are doing each time we meet. It is so important to be open with feelings and not try to hide behind them they are ours and thats okay that we share.
Thank you for sharing your story.