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  • The Vail Project

Forget the 5 stages of Grief, this is my version:

Anyone who has been to counseling for grief has probably heard of the Elizabeth Kubler-Ross five stage grief model. The stages as she's lists them are: denial, anger, bargaining, depression and acceptance. Though it was ages ago, I earned a minor in psychology in undergrad and we studied this model even back then. There are new research studies that indicate certain types of grief don't follow this model. Not that this is very surprising. At least not to those of us who have suffered such a loss. Below is what I have experienced so far in terms of stages of grief. I think that these stages can be experienced in any order and that one can visit each stage more than once. Instead of a one way ladder with the bottom being your loss and a progression through the stages culminating in acceptance at the top- imagine a roulette wheel that you are forced to spin every morning when you wake up. This is the Candice Nelson version of the 5 stages of grief, Vegas style.

Stage one: "Zero Hour" AKA "Shock." For us, this was the very first stage of grief. I would hazard a guess that it is quite possibly the universal first phase for anyone experiencing child loss due to SUDC. Those of us who lose a loved one very suddenly and unexpectedly are forced into what I call Zero Hour or the Shock phase. This is when time begins to stand still. When the non-reality of what has just happened is so unbelievable that it is impossible to even know whether it really did occur or whether it is just a nightmare that you will wake up from any minute. For Steve and I, this phase lasted for 3 or 4 days. Some might refer to this as Numbness. Which is another good name for stage one. During those first few days after Vail passed, we couldn't really understand what was happening to us. And while we moved through those first days, none of it felt real, and at times we didn't feel anything. It is really that numbness paired with a haunting vulnerability that I think made it possible for us to bear the unbearable the pain during those first few days. Eventually the numbness wears off and then phase two begins.

Stage two: "The nightmare begins." This is when the shit really hits the fan. Without the numbness to protect us from our real feelings the brain becomes fully aware of the recent trauma. For those of us who have lost our children suddenly, we are all too familiar with the traumatic memories and flashes of our experiences. These memories are so vivid at this phase that it is truly like reliving the moments over and over again. And not just in your mind. Physically as well as psychologically, the body and mind are affected equally. For me, I had this physical body ache due to the emptiness of my arms. A 16 month old child is always being held and cared for. Vail was a big time Momma's girl, so without exaggeration I probably held her 5-6 hours a day. Not all at once of course, but on and off through the day. To have that kind of physical closeness with another person makes them an extension of your body. While I have no idea what phantom limb pain is like, I imagine that it feels similar to how I felt those first 3-4 weeks. Like an actual physical part of me was missing. The nightmare part of the Nightmare phase is the PTSD settling into your neurons and brain synapses, making itself at home. The traumatic moments of finding your child lifeless and every single millisecond that followed is on DVR repeat in your movie screen visual center. Doesn't matter whether your eyes are open or closed. The imagines are there. This phase may manifest as reoccurring dreams. Or in our case, no dreams at all. You have to actually make it to REM sleep to dream and we couldn't sleep for months. The worst part is when 7pm arrives each night. Bed time routine time. That was the last time we saw Vail. That was when we put her to bed for the last time. Then, as if our body clocks began a count down, the next few hours are pure torture. Over and over again every night. I truly have no idea how long this phase lasts for me or for anyone else. Steve and I still wake up many times a night to check on Aspen, to make sure she is still breathing. 7-9pm is the twilight hour at our house. Anything can and will happen emotionally. We try to manage it by focusing on Aspen during that time, but it is still the bedtime routine portion of the day. This is now the time that I also try to focus on writing these blog posts. It is just one way to redirect the repetitive trauma reel in my brain away from its predictable path.

Stage 3: "Annoyance, Impatience, Rage " I don't feel that the word anger adequately describes this phase of grief. It's just not complex enough. For both Steve and I, anger has manifested in multiple forms. Annoyance is the standard underlying feeling that floats just below the surface all the time. Everything is irritating. The sound of the dog breathing too loud, the way my clothes are too loose or too tight fitting, the sounds that Aspen's toys make, the way people drive, having to wait at the red light or in line at the grocery store, the sunlight in my eyes....all super annoying. That list is infinite, because everything grates on our every last super-exposed nerves. Worse than the annoyance is the impatience. And I have no idea why this is such an issue. But it is. We have zero patience. Zero ability to deal with the simple requirements of day to day life. It really becomes a problem when this impatience is directed at Aspen. She can't help it, she's 4. She sings Frozen II songs literally ALL day, she says Mommy, Mommy, Mommy, Mommy, Mommy one hundred times in a row to try to get my attention, she wants to play something and when you oblige her (even though you cannot even begin pretend to have any imagination or joy in such play) she demands you do it exactly to her specifications or it results in a meltdown. She won't eat or get dressed or brush her teeth. The tippy tops of the pile of most irritating behaviors: wanting one super tiny specific toy, that we know we won't be able to find, and she won't be satisfied with anything else. Of course, these are every day 4 year old behaviors. In the throws of grief, especially Stage 3, our ability to tolerate any single one of these things, let alone all of them at the same time, is pretty much nil. So we snap. Or the tone in my voice is the same one I had when I was 13 and dealing with my Grandmother (sub in mother for those of you who had one). I know that you know the tone I mean. Any little thing can set you off and then you go from Irritation to Rage in about the same amount of time that a lamborghini goes from 0 to 60. When the rage comes, it knows no bounds and no target in the immediate vicinity is safe. Fortunately, the tears come shortly after and right behind the tears, comes the guilt. When all of your nerves are raw and open and festering for the world to see, even a light wind can turn you into a grief monster. The only good thing about this phase is that no one lives in it every minute of every day. Its basically like red 11 on the roulette wheel, when the ball lands on it we lose our sanity but the next spin around takes us somewhere else.

Stage 4: Depression. Unfortunately the word depression is the best one for the job here. It's not a sexy term and we all know what it means. Most people experience it in some form or another, at least once over the course of their lives. Grief related depression generally falls under the subcategory of "situational depression," meaning that it is brought on by a specific event or situation, for example: the death of a loved one. However, I think that in the case of child loss, situational depression can slide downward into major depression or persistent depression very easily. In this phase we must be the most cautious. Awareness of how deeply one is affected by their depression is important. Friends and family can help here too. If you want to support someone through this stage of grief, get familiar with the signs and symptoms of major and persistent depression. Pay attention to the griever and make sure they are getting the help they need if their situational depression progresses. For me, this phase comes and goes like the tide. In the morning the tide is high, I experience the most sadness and hopeless then. I'm not sure why, but I think it is probably due to the start of another day without Vail. It's like I am surprised the sun came up again and so I must figure out a way to force myself through the fog of fatigue and into the required actions of the day. Each day demanding I rise to meet it. Then the tide goes out as the day pushes ahead. And the tide doesn't come back in until 7pm, our personal schedule for high tide. Unless of course there is a sudden squall that blows in the form of PTSD and/or triggers. How quickly we begin to drown.

I won't pretend to be an expert on managing depression. And while I know I am depressed and have no embarrassment in admitting it, I feel as though the situation warrants it. I will ride the tides for the rest of my life, because that is how long I will be forced to live without my child. I just have to believe that maintaining an awareness of how I am managing it in any given segment of time will keep me from spiraling down. Steve will call me out if things get too bad and he knows that I will force him to get help if the emptiness and sorrow become debilitating. We will support each other through this stage of grief, no matter how many times the little white ball lands on black.

Stage 5: Endurance. I'm not sure that there is a true acceptance when your child dies. If there is, its waaaaayyyyy down the road. The word acceptance holds this implication of moving on. No one moves on from the loss of their child. I mean no one. It is something that we will carry with us every single day for the rest of our lives. Many of you are probably thinking to yourselves right now "Candice, your loss is just too fresh and time will help heal you." If I hear one more person say "time heals all wounds," I am going to have a 4 year old size temper tantrum. Time doesn't heal this wound. Anyone who doesn't believe me can call any other SUDC parent further away from their loss than I and ask them how well time has healed them. You won't like what you hear. What I believe changes over time is our ability to cope with the pain, the sadness; the rising tide and the triggers. We learn how to manage our grief and how to channel it into our chosen outlet. We will do it because there really is no alternative. For Steve and I, our outlet is The Vail Project and The Vail Bracelet. We pour our pain and sorrows into that and hope that someday it will fill the tiniest portion of the huge gaping hole in our hearts. The common thread I have seen so far with other grieving parents is that they channel that energy into something that honors their child. Something that makes them feel like the world will remember their baby. Even if it's just for one day each year. This is not a sprint, its a marathon, one we will be running for the rest of our lives. Like hamsters on the never-ending exercise wheel. Endurance is the key; surviving one day at a time and learning to live with the emptiness instead of letting it consume us. I won't pretend to know how long it takes to master this phase. You can ask me when I'm 80, I might know then.

So, there you have it, the Candice Nelson child-loss version of the 5 stages of grief. If you are looking to support someone while they ride the grief roulette wheel through the stages just remember that no one knows where the ball will stop today, least of all the grieving parent. Be kind. Remember that we are no longer whole people, we are fractions of our former selves. Keep your expectations at a realistic level. And always be ready for the incoming tide.

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