July 6, 2017 will be exactly six years that I lost Ava.
Six years since I heard her voice.
Six years since I cuddled her in my arms.
Six years since I held her hand.
Six years since I sang and danced with her.
Six years since the world felt right.
In some ways, six years is a long time. But in other ways, it is also not very long at all – just six years. Young. Sometimes the grief is so fresh. Sometimes well scabbed over. Sometimes robotic. Sometimes new and sometimes old. But grief is present all the time. At this point, six years have been a time of learning to weave the grief into every aspect of my life and also learning to keep Ava’s memory alive all the time. It’s juggling happy /sad and love/hate and empathy/apathy and compassion/indifference. It’s a balance that doesn’t exist. It is keeping my head above water. I do OK most days, but that has been with a lot of hard work and a lot of conscious effort and a lot of letting go of what I cannot control ~ pretty much what I really never had control of in the first place.
6 months to two years were the most difficult for me. Here’s why:
Having other children is a big big distraction. Huge. Parenting was required. Firstly for Alivia when Ava passed away and then for Anaya. I didn’t have a choice, they needed to be cared for. I also think the distractions lessoned the blow of Ava’s passing. I didn’t have time to be in full blown grief, even if I wanted to. Who would step in to take care of them?
I was also relieved, as awful as that sounds. I was relieved that I never had to live another day and night in the hospital. I was relieved that I never had to wait on pins and needles for bloodwork results. I was relieved that I never had to worry about bruises and red eyes. I was relieved that I never had to go through any more hospital tests and visits. I was relieved that I never had to be on the receiving end of that dreaded, life changing phone call. I was relieved that I never had to worry anymore about the cancer coming back and taking my Ava. When Ava died, all those things died, too. But, I was mostly relieved for Ava. I was relieved that she could leave a world that couldn’t save her. I was relieved that she never had to endure another surgery, another procedure, another dose of poison (aka chemo), another transplant, another blood transfusion, another pause to her childhood. I was relieved that she would never die a yucky death fighting for her life in a hospital ICU. I kept thinking there must be something better for this beautiful, innocent child. She never asked for this. She didn’t deserve this and she was so much better than this. Ava had a light that shone brightly and everyone that ever met her knew it right away. They knew she was different. They knew she was special. Ava changed people’s lives. Surely there has to be something better in the universe than this for my Ava? Ava was finally free from the cancer. Ava could finally be a kid somewhere else out there without me…but free and joyful and playing and healthy.
From the time she passed until 6 months, I mostly felt that stunned relief.
For the most part, I can honestly say out loud that I am doing OK. I can answer the “How are you?” more truthfully than before. Basically six years out, I don’t have the same notion to punch the cashier at the store in the face for simply asking me: “How are you today? Did you find everything you need?” Whereas once upon a time I would have not only wanted to punch her in the face, but I also would have wanted to scream at the top of my lungs: “How am I doing? Seriously, how am I doing today? I am surviving, lady. That’s the top of my to do list for today, yesterday, and tomorrow. Surviving. My child died in my arms. She is never coming back. She fought so hard and went through hell only to lose her life to cancer. A severely underfunded childhood disease. That’s how I am doing today. And how are you?” Tsk tsk, not an acceptable response. So, I kept the keeping it real to myself. But today, respondng with “Fine. Things are going well.” is the truth. For the most part, our lives have continued and we’re all doing OK, considering dealing with the magnitude of a loss with great impact such as losing a child. (NOTE: This is a hard thing to write because, again, I don’t want people to mistake this for somehow thinking that “time heals all wounds” or that I have “gotten over it”. I am cautious because I don’t want my “we’re doing ok, despite things” to get misinterpreted.)
I am mostly fascinated with what the body does to protect me against the severe grief. I am somewhat protected with a shield or cocoon around my heart. Whether this is practice from being with my grief for this long or another element, I am not sure. But there is a coping mechanism at play here that I have either developed or it just comes naturally with time. Here is how it works (for me): When I allow myself to remember and deeply feel the night, the moment Ava died. The exact circumstances. Who was here. Where we were sitting how I was holding her, what I was saying, her last breath…I spiral down, I remember, and it is almost like was that a dream, no horrific nightmare, or did that really, actually happen? And I am there again – fresh in that moment. hard to be there, but easier to get out. Thinking of this happened all the time in the beginning, over and over and over again. Then, not so much. Did I block it out? Was I healing? Why wasn’t it as severe a memory as before?
Our lives when Ava was sick were very public. Everyone knew our business. I loathed going anywhere for I feared running into someone and actually having to talk to them. All of sudden my stressful life or death kind of life wasn’t something I wanted to talk about. I remember seeing someone and trying to avoid them at Costco. When we eventually were face to face and they started asking me questions, I had to stop her and tell her I couldn’t talk. Fast forward to when Ava passed away and running into people. Can I tell you just how awkward and awful it was to run into someone who didn’t know Ava passed away and she asks me how my little one is doing? Yeah, I am sure you can guess how that conversation went over.
I felt that my life was an open book and I longed for privacy. I didn’t want everyone to know my business and it was very hard for me. I also hate being the centre of attention and hate being put on the spot and having people look at me. However, I do enjoy public speaking! Weird, hey?! That is, if I can be prepared and in control of what I am saying and sharing. When Ava was sick, it was really difficult to deal with the overexposure of our lives. I had a friend set up a Facebook page called “Prayers for Ava”. I wanted it up in case we ever needed to go for a transplant. I never posted on it. Back in 2008-2010, Facebook wasn’t as popular as it is now. I kept a group of people updated on Ava’s progress through email. The first thing I did after Ava passed away was delete that Facebook page. It was freeing for me to be in control of my privacy again.
I again get that knock me to the knees feeling when I stop, sit quietly with my grief and think about Ava and how she was here and how she is not here and how she is never ever coming back. I think of how I really lost my four year old daughter to cancer and how I really had to wake up the next day and live without her and the day after that and the day after that and the day after that and today and every other tomorrow forever! That again, will take me down down down….as it should. Those deep raw and fresh feelings were, at one point, all consuming, all the time. No control of them taking over and at time, no warning whatsoever. But over time, it is like my heart forms a cocoon, and those really awful, horrific, and terrifying moments and memories are somewhat protected by the cocoon. I can unwrap that cocoon any time I want and at times, still, with no warning, but as time goes on, I can control it better as I have become stronger and I am also becoming the “expert” in my grief. Phew, that was heavy, right?!
Truth be told, I don’t think I recognized this until I was around someone who is new to the bereaved parent world. I read their words or sit beside them and I hear the raw pain that is fresh from loss. I hear the bitterness, anger, and the “why” relentlessly – like they are obsessed. That is when I realize how far I have come,six years out. I still hold onto those same thoughts, they never change. I still want what can never be, for Ava to come home. And I still live with the pain. It is all the same, but it changes. It shifts, and eventually, it cocoons. But it is still there and that is the most difficult part for the non-bereaved parents to truly understand is that the fiery knock you to your knees grief may not present itself as it once did, but it is still there, still as fiery as ever, but hidden, and ready to burst open again at any given moment.
I have learned that there isn’t any answer or justification to when your child dies. I have learned that no plan, no big picture, no “too beautiful for earth”, none of it means that it was OK for a child to die. Losing Ava didn’t have to happen so that “so and so” would happen. Uh-uh, nope. What I have learned is that over time, I can create something with my brokenness. I can create something beautiful through embracing something so painful. I can take it and I can create something.
I also believe that when I gained my privacy back after Ava passed away, it helped to create that cocoon that I so longed for. I did attend a group for bereaved parents, but preferred one on one counselling. I also don’t get together with any other parents who have lost a child. The group scene is not for me. That is the introvert in me. I seek information and read a lot. I also let my feelings out by writing. I enjoy the control I have by sharing what I want on my own terms. Again, protecting myself as much as possible from being hurt.
COCOONS and BUTTERFLIES
My grieving heart is in the cocoon stage that will most likely last a lifetime. My cocoon has been built to protect my heart from all the “things” that used to hurt so badly the first few years out. Although this cocoon is one that my heart can escape back to when it needs protection. Like my happy/sad life, my cocoon/butterfly coexist and interchange when I need them to. But perhaps my grieving heart, my cocooned heart is also my creation. It is what I can create and share from my experience. My writing, my book, my creations are just like a cocoon- in the creation stage and soon will release into a beautiful butterfly for all the world to see.
In six years I have learned many important lessons about child loss. These five most come to mind today:
- There isn’t a reason – it is just one of those horrible things that life deals us. Please don’t ever tell someone that it is OK (in one form or another) for their child to die. There is no justification for something so horrible. Just be there. Just listen.
- I am still Ava’s mom and I can still parent her from afar. As far out as this idea may sound, it is true and if we believe our children are still with us, then parenting them becomes very important.
- Grief is forever. Just like Ava being gone is forever. Yes, I know she is always with me, in my heart, and in spirit. But let’s be real people, she is not physically here and that is very different. You go on and hug your kid right now and tell me Ava is here in sprit and see how insensitive that sounds. Let me be sad and angry and whatever I need to be at the fact that she is really not here the same way your healthy child is here with you.
- Grief forms a cocoon over time. This cocoon is controlled by a stronger sense of healing. It takes a lot of hard grief work to get here. It also takes a lot of choosing to be here. It takes a long time of talking and processing. For me, it was a lot of talking, counselling, reading, and writing. It takes time.
- Grief for your child and love for your child is the same thing. When you know someone who is hurting for their child and think they should move on or things should be better by now…Remember, the tears and the hurt and the longing are because of that unconditional love between parent and child. That soul connection that can never be severed. It is love. Grief is love. Never ever rush them. If you would never tell someone to stop loving his/her child, as such, you should never tell them to stop grieving for his/her child.
I also watch Ava’s videos way less. Hearing her sweet little voice and seeing her joyfully running around singing, dancing and playing, is too much. I feel like I might just die. Again, it sends me down quite quickly. This is something else that fascinates me – I watched them all the time in the beginning. They brought me so much comfort. Now, they bring me more sadness and more in touch with the fact that yes, Ava is gone and never coming back. Sometimes I just don’t want to go down. But I always have those videos and pictures, thank goodness, and can access them at any time.
It is amazing what perspective one can gain after great loss. I am still learning everyday.
I have been given many wonderful gifts just from being Ava Hope’s Mom!
I miss you so much, Ava.