Disoriented. That’s how it feels sometimes, maybe a lot of the time. On some days I must seem a little distant as a result. Not spacey, but just slightly removed. I try not to be when other people are around, but many times it is when other people are around that our minds are brought back to places and times that once were, or thrown forward to places and times that won’t be. I am aware of the momentary disconnect this can create and often think people must wonder what goes on in my head. Possibly we all appear so ‘normal’ and ‘good’ that most think our minds function just like everyone else’s?
They don’t, and part of carrying this is realizing our minds are forever reeling, coping, re-learning and adapting to this disoriented life- without.
Pre-occupation with thoughts of our child
We wake each morning and go to sleep at night, every night, thinking about our child. Some nights the thoughts are almost unbearable. Thoughts of the days leading up to that day, of regret, anger, guilt, shock, sorrow, blame. Sometimes a smile and a good memory. Regardless, our children are our first thought in the morning and the last thought as we drift back out at night, without fail. The rest of the day isn’t much different. For me, unless I am hyper-focused on something, like while I’m at work, not more than a few minutes goes by without a thought of my son. Never, no exaggeration. Images, wondering, missing, daydreaming of him, the physical aching of needing him back.
We see our children in ‘real time’
We picture our child in real-time. Whether it’s making coffee in the morning or walking the dog. We imagine they are there. Sitting at the counter eating their oatmeal, riding a scooter beside us as we walk the dog or riding shot-gun with the top down. ( I will never hear the song “Shot Gun Rider” without thinking of him and seeing him there next to me in my peripheral vision.) We wonder what they would be saying? We hear their voice, that treasured sound, like it’s right there in the room with us. What would we be talking about? What would they be saying? We can almost feel them back in our life because that is what is right and normal and should be. Not this.
Then, just like that, the scene floats away and we are back to that palpable sense of absence, that perpetual hollow, the empty stool. We think, ‘My God why can’t you be here? Why must this be?’. We do this a lot.
We re-live the end of our child’s life
We go over and over and over this. Daily. Like a nightmare on loop. We come up with 1,000 different ways it could’ve been different. Alternate endings to a movie. Better endings, where they come out alive. What if…I were there, I hadn’t chosen that road to drive on, I chosen a different form of treatment, I had said ‘no’ to him riding his bike that day? If I had only….come home sooner, told her I loved her more, fought harder for that other treatment, not put a pool in the back yard, made him wear the helmet…whatever our scenario-it goes on and on and on.
If only… anything could’ve been different that would’ve saved them.
Deserved or not, we lay the end on ourselves. ‘It was our job. He was ours to take care of. I failed at the only thing that really mattered, the most important thing I’ve ever had to do, my precious child I would die 1,000 times for.’ We wish for another chance even though we know it’s in vain. We want a rewind but instead, we are the mother’s who lost their child. That’s who we are. We feel responsible. They were ours. We think about this all the time. I’ve been told that goes away “some day.”
I’m still waiting.
We count the days they’ve been gone. How long we’ve made it without them. We count the days until their next birthday. We count the days until the ‘anniversary’ of them leaving us. (what a totally asinine way to describe it, by the way) We count the days until the next holidays we have to endure without them. We count how many holidays we’ve had without them. We count how many more years we will likely have to live without them. It’s always too many. Eternity really, when so many moments and days go by so dreadfully slow.
Maybe it brings a certain order to our mind that has been shattered from an out-of-order experience? Maybe it encourages us to see how long we have been able to survive? Maybe it helps us prepare our mind for yet another season of heightened pain? I’m not sure why, but we count.
Today is 20 months. That’s 611 days, 14,676 hours, 880,620 minutes or roughly 53 million seconds without seeing or touching my son. However you want to measure it. And it just happened for us. Just happened. We’ve such a long way to go.
Our life feels disoriented
One day we are almost elated because we realize we are doing this. We are surviving. We feel as though we could do this for as long as we had to. Then the very next day we are begging God, ‘Please, make this life pass more quickly. I can’t do this, I don’t want to. I can’t wait 30-40 more years to hold my child again. I can’t.’
We embrace life one moment and wish it away the next? It’s dizzying. Disorienting.
I always feel like I’m missing something. I feel homesick when we go away anywhere, but it’s not home I’m missing. It’s the feeling that he is not with us, but he is supposed to be. It feels like we’ve left him behind, but we haven’t.
It’s that he is missing from us and we are aching for him.
The French language says it perfectly. ‘I miss you’ in french is ‘Tu Me Manque’ and it’s interpretation is ‘you are missing from me’. I love that because it articulates the absence of child-loss so much better. Yes, we miss our child, but they are missing from us. That part of us is missing. I feel this may be especially true for Mothers, who had the literal physical attachment and sharing of life force with their child for months. Keeping them alive with our very own body.
The sense of never feeling together, or right, of things not being OK is always there. It’s disorienting, and I’m certain it’s noticeable on some days. But it’s what this is. Sometimes still, when 3:30 PM hits, for a nano-second my brain says, ‘the bus is coming in a minute..’ and my heart is happy with anticipation of seeing and hearing him come through the door. The bus is coming, but he is not on it. And that awareness that immediately follows is jolting. Disorienting.
I remember vividly being in a restaurant not quite a year ago and having intense feelings of panic, like someone had just snatched him and I couldn’t find him. Like he was somewhere lost, taken, alone and waiting for us to find him. One part of my mind was saying Run! Get him! He needs you, he’s lost and alone and away from us!, while the other half was still grounded in reality. He’s not lost, he’s gone. You can’t go find him- remember?… I was having a fight or flight response-breathing rapidly, heart rate pounding, butterflies in my chest, tingling in my extremities that were needing to act- to GO get him. A battle in my mind and physical body while sitting at some restaurant, trying to have lunch. I can only imagine how far away or crazy I must’ve looked to those around me at that time.
It’s not crazy, though. It’s the mind dealing with the loss of something that is never supposed to be lost. The heart not fully accepting what’s been so savagely torn from it.
The disorientation of living life without your child.
Understanding and acknowledgment brings healing. If you know someone who has lost a child,
please forward this to them so they know they are not alone in the dark, disorienting world of child loss.