My Life After the Death of My Son

I give this space to Mindy Pedersen McHardy, mother to Connor, who died on February 29th 2012. This is the first anniversary since his death and Mindy wanted to share some of her thoughts about what life has been like since. ~ Julie

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Imagine over a 3 month period, nearly every second night, your child lets out a cry, struggles to find an adult who is rushing to meet him, while another is turning up the oxygen and reaching for the phone. You pick up your child who is coughing, is a shade of blue/grey and is in obvious respiratory distress. He then turns cold as ice and stops breathing. The entire time you say to him: “It’s going to be okay. Mommy is her. It will all be okay” when in reality, you have no idea what this is, why it is happening or if he will survive this time around.
Today marks the first anniversary of my son, Connor’s, death – he died 4 years ago on February 29, 2012 (the rarest day of the year). Described as Complex Cardiac, my son had differences in nearly every system of his body. He was autistic, developmentally delayed, non-verbal, and medically fragile and technologically dependent (nasogastric feeding tube, then gastrostomy tube, oxygen, and continuous positive airway pressure or otherwise known as CPAP). There was no unifying diagnosis or syndrome for Connor’s differences though it was strongly believed to be genetic. My son’s medical journey was a mystery and we relied heavily on the health professionals both in the hospital and in the community to ensure Connor lived his best life in spite of his differences for however long that would be.
What have things been like since my only son died? In short, after Connor died I longed for my busy life back~ a life where I was exhausted beyond belief but where every moment mattered and was filled to capacity with life and Connor. I wouldn’t say my purpose was gone when he died. Although I loved following Connor’s lead and being his mother, I didn’t do it out of obligation. I did notice after his death, the time I had on my hands and the control I could regain over my own life~ a control once snuffed out by the complexity of my son’s medical needs and the requirement to be more than a mom.
Still, the habits of nearly 8 years are hard to break and the silence in my house was truly deafening. The absence of the Leapad or the Backyardigans , the hum of “the bus depot”(our nickname for the obnoxiously loud oxygen concentrator) or being awakened by imagined alarms that, not too long ago, were a constant reality; all reminders of what was. Daily calls for meds or supplies, paperwork to submit, calls from doctors and nurses asking how Connor was and how our family was coping all stopped abruptly once Connor died. What surprised me was how deeply I felt that loss as well.
I did not return to work. My fibromyalgia reared its ugly head and I struggled to find a balance and manage things. All that doctors could tell me was that I was constantly in fight or flight mode and that my life was so stressful that I shouldn’t expect an instant return to health. Of course I was flared up, it had accumulated over 8 years and who knew how long it would take to regain a balance.
We welcomed a baby girl in the summer of 2014. She was born healthy without the entourage of support (nurses, feeding tubes etc.) I had become so accustomed to. From a care perspective, I was taken aback by what being a mother was all about this time around. In some ways, Addison reminds me of Connor. I see him in her eyes and in certain expressions but she has her own personality. I feel sad knowing that she won’t get to know her big brother the same way we did yet I am so happy we get to know her and she gets to show us what life will be all about with her.
My experience since Connor died was not the one described in the mega text on five stages. Misunderstanding these as neat packages of emotions you will go through is misleading and gives the impression of full recovery.

(Julie’s note: These stages were originally applied to DYING not GRIEVING which has led to tremendous unnecessary confusion for those who are grieving)

My personal believe is that grief is not linear. I didn’t move from one emotion to the next; healing with each passing moment. It is also incorrect to assume that the first year is the worst and after that you are back in the world operating at full capacity. In fact, it is more reasonable to consider grief as something you carry; something that never completely goes away.
What do we do after a significant loss? Whether we consciously do so or not, we redefine ourselves and our lives. It will never be the same and that’s OK. How things change is different for everybody and there is no right or wrong way to grieve or to live after the death of a loved one, but especially the death of your child. You can’t go around grief you can only go through it with those along beside you who care.

Here are some things I have learned since Connor died:
My husband and I grieved differently. Not only is that okay but it is normal. I am grateful we gave each other the space to work through our own processes while still being there for the other person in the ways we could (like going to the pub for dinner together). The realization that my method of dealing with things was not only ineffective for my husband but actually made things worse for him, helped me to understand when we were “on different pages”. Both of us in the same story, grieving and feeling an intense loss which for my husband had no words and at times was greater than my own.
Creating space for healing. I turned to yoga and meditation to help me process the past 8 years of intense caregiving and the death of our son. I believe that the body stores emotions and no better place than on a Kundalini yoga mat to explore these emotions and let them go. Yoga, breath work, meditation and mindfulness were all tools I collected along the way that have helped me be calm, take time for myself and heal. Reinventing who I am and rediscovering a life lived in the present moment with love, peace and joy. This is a life I never could have lived without meeting and knowing Connor.
There is no time limit on grief. Don’t allow anyone to put time restraints on your grieving. I will not go through this in the same way you did when your friend, spouse, parent or child died. All deaths are equally tragic with a different set of circumstances that will define your experience. All of them are a different ball of yarn to unravel and patch back together. The length of time this takes is irrelevant.
The things people say – are for them; to make THEM feel better about how YOU are doing. I understand that their intentions are good and maybe they just don’t know what to say and blunder. I have learned to shrug it off. Some of the things people have said (and believe me there have been some doozies) led others to advise me to drop them from my life. Instead I adjusted my expectations of them. Through forgiveness, I allowed myself to feel gratitude for “their way,” even if it wasn’t at all what I needed. One of the worst mistake people make is to assume they know what the grieving person needs and what they should or shouldn’t be doing. Remember there are no “shoulds.” As a supportive friend or family member, just act as you always have and reach out when you haven’t heard from them. Above all, ask them what they need. Be prepared that they may have no answer or say they need nothing but don’t apply that to everything – a coffee drop off, baked goods, food will be welcomed though it may never be explicitly asked for. Most importantly, don’t leave it to the grieving person to contact you when they feel up to it. I found it hard to ask for companionship. All it took was a few refusals for me to feel like I shouldn’t be asking for someone to sit around on the couch and keep me company.
Tears are good. Allow yourself time to sit with these tears and become comfortable with their presence. You alone will develop your ability and system of dealing with this when it happens. Those who understand – those who really get it -are out there but it is also within you to heal. So whether you choose a support group, personal yoga practice, skydiving or nothing at all, that is your choice and nothing there is no wrong way so long as it feels right for you. Give yourself permission to create your own process. Keep close those who get it and be okay with saying, “Not right now” to those who don’t; keeping gratitude in your heart and mind. Have gratitude for the day, the fact that a friend reached out, that you had a good sleep or in my case, gratitude that I had any time at all with my greatest teacher – my son.
Connor’s life helped me to heal my own insecurities. He taught me I am good enough just as I am, to not to be afraid to speak my truth and that it is okay to say “No.” It is in his honour that I share his story as a volunteer speaker, family adviser and child health advocate. That is what his life and death did for me: it gave me the space to reflect on my life thus far and make changes to live fully in the present moment.
This post is dedicated to my only son, Connor McHardy born on World Autism Awareness Day (April 2) and died on World Rare Disease Day (February 29)~ a little man whose statement couldn’t have been louder – Mommy is still listening Connor.
Click HERE to watch a video about Connor’s journey.