I've put two "loss lists" on this blog so far. I have another one in mind today. I'm not sure how to explain it. It's a list of the holes that Joel will leave, I guess. Many of the things on the list, are things I'd normally be so glad to get rid off. It would be a list of rejoicing if losing them meant Joel was well. But now the list leaves me in a very strange emotional landscape. Of course, right after I wrote the line about Joel being well, I gave a small laugh at the irony. Because of course, this list DOES mean that Joel is well. He's just well without me there to see it. And that is a big bummer.
So this list places me in a strange landscape of very mixed feelings. I'll just write the list. Maybe you will see what I mean.
Medications. When Joel is gone, I will lose a shelf full of meds. I'm pouring them straight down the sink with tears pouring down my face on the day he dies, and maybe you can see why I can't explain the feelings this gives me. But that is what I'm going to do. Pour bottle after bottle down the drain and throw the bottles in the garbage. Along with the oral syringes. I'll be losing three med times a day, morning, afternoon, and evening. 10pm will come, but there will be no need to go and get the meds.
Joey Pump with bags and IV pole. I'll be return this item, I won't throw it in the garbage, don't worry. When I return this item I will be donating the little stand my father made for me to the RRC for some other child to use. We'll be losing three "feeding" times and two "drinking" times a day. I won't have to mix up milk, or put suppliments in it. I won't have to clean the bag out and rinse it. No more formula sitting in my cupboard. The first thing I do every morning (after I kiss Joel) will not be to make up his milk and hook him up.
One CPAP complete with tubing and face mask and monitor. It will no longer sit on our dresser in our bedroom. I won't be cleaning it out once a week and soaking it in vinegar water. I won't be hooking up it Joel every night, probe on his toe, fresh water in the humidifier, placing the mask on his face and adjusting the straps. There will be no light flickering a heart rate in the darkness. There will be only silence, no hum of a machine.
Two playpens. I don't know what I'll do with these items, or the crib in our bedroom. Not something I can think about right now, to be honest. But they won't stay in our living room, downstairs family room, or bedroom for ever empty. Eventually they will have to go. And when they do, for months I will look at the chair or dresser or whatever happens to replace them with a sense of shock and surprise.
Appointments. I'll be losing those, and you all know that they are something I've been trying to lose for a while now. Just not this way. The calendar will be empty. I wonder if I will miss any of the doctors? I'll be losing the phone calls to the neurology nurse and the emails to the palliative care nurse. I'll no longer be walking into Children's Hospital as if it were my second home. Believe me, that gives me a VERY strange feeling.
My "housebound" lifestyle. What can I say about the freedom I will suddenly have gained? How we'll be able to go anywhere at any time and all together? How we can go on trips, even to PEI for a visit? I'll go out in the evenings with friends and be free of guilt. But only until I realize once again the cost of the freedom. For every time we go out, will we not feel guilty that we can go out, and sorrow too for the reason why? A vacation will be a very bittersweet thing, we will think of little else except how we wish we could have taken Joel on one.
The tension, the stress, the worry. Whatever you wish to call it. The constant monitoring that I do. Checking breathing, checking temperature, checking diapers. Worrying at least once a week over whether we are heading for the hospital. The whole thing. I'll be losing that. Oddly, for awhile I'll just be gaining it all back. As C.S.Lewis pointed out, there is that in grief which feels oddly like fear or anxiety. And the sudden loss of needing to check and monitor will leave me feeling anxious. There will be a hole in my existence, like a missing tooth, and my mind will keep going back there to "worry" at it. I'll have a constant sense of "something's wrong" as I keep reminding myself of what that is.
I could go on, but I think I have said the big ones, and certainly enough to give you the idea of what I mean. The landscape I'm talking about. The mix of relief, guilt, sorrow, longing, freedom, regret, the whole big mish mash. And other feelings I can't even begin to describe.
This blog has reduced me to a sodden mess. I've surprised myself with how much pain is in the loss of all these terrible things, and I've been weeping silently trying to keep Melanie from hearing me, as she's here for respite and keeping Joel happy right now.
Strange isn't it? All these tasks, all these hated interventions, all the chains they put on us. All of them are part of life with Joel. And when he's gone, they will leave a very large, if very strange, sort of hole in our lives. They are a different kind of loss list.
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