Timing

Awhile back, I had a short conversation with someone where the words "early grief" came up. I mulled these words over quite a bit. It was much more than just that particular conversation that I was mulling. All through this whole "journey" with Joel, there have been comments and conversations that all combine to shape my thoughts here.


I have been told, well, let's just say quite a few times, to JUST enjoy Joel. I emphasised the "just" part, because if you leave it out or put it in, makes a big difference to the meaning of the phrase. Telling me to "enjoy Joel," means that Joel's presence in my life can bring me many good experiences if I actively participate. I think I can safely say that most of the time this encouragement is unnecessary. It's hard not to feel a bit... like I'm being condescended to? when I'm given this encouragement, as it seems like the sort of rudimentary advice that even the simplest of us could figure out, but I try and accept it when I hear it, in case I need the reminder. Though I think anyone who was around to watch how every single smile or giggle from Joel lights us up like a Christmas tree would stop worrying about if we enjoy him or not.

On the other hand, telling me to "JUST" enjoy Joel changes it up a bit. The implication here is that the only experiences I should participate in are the good and enjoyable ones. That somehow I should exclude any negative emotions or experience, or perhaps to be more accurate, that I should refuse to participate in them on an emotional level.

There might be people in the world who can achieve this "zen" attitude, but then again, I don't hold the same religious beliefs and I don't want to either. I'd prefer to experience the emotional level of all the experiences of life with Joel. Because with great love comes great sorrow. I could never have been a "Jedi," I think that God created emotions and I think He calls us to be emotionally involved with the people around us. If experiencing the incredible joy of seeing Joel mouth "MMMMM" means feeling the incredible heartbreak of when he can no longer do this, then it's a price I will pay. But I really can't see how I could do one, and exclude the other.


Of course, when people say "just enjoy Joel," I don't think they really mean that I should never experience sadness or pain or grief. I think the usually unexpressed part would end the sentence "for now." Meaning I should put off the negative emotional experience for as long as possible. Or maybe I should say that they mean "Don't grieve until Joel is gone," though of course "just enjoy Joel" sounds a lot more positive. I did once hear the phrase "early grief is selfish."


And perhaps that highlights the problem. It's a question of timing, isn't it? At least, that is what I hope that the people around me realize. This is really about timing, and about different opinions about when I should start the "grieving process." I said "different opinions" because that is what they are. Opinions. For each child and each family that is dealing with a terminal diagnosis has a different and separate sort of journey. And the "when" and the "what" of their grieving will be very individual.


This is one reason I've written an encouragement into my welcome to this blog, for readers to start at the earliest posts and read forward. I put that part in there, right from the beginning, because I knew even then that what I was recording in this blog would be a sort of "progression" or as I prefer, a journey. If you start reading in the middle you'll never understand where I'm coming from. And that part is important. You'd really be missing a big part of the story if you only read the last ten posts.

Grief is different depending what part of the journey you are on. The ironic thing about the comment on early grief is that, in my experience the "early grief" is the LEAST selfish. Oh sure, grief is self-absorbing. Lots of it is about one's own loss and pain. But the least selfish time of this process, at least for me, is the "early" grief. Because this grief is not solely focused on my loss. This part is where I also am grieving for all that Joel has lost. It's later on, once Joel is gone, that my grief is more absorbed in all I have lost.

In the beginning, we had our diagnosis. I grieved the loss of Joel's sight. I grieved that he'd be developmentally delayed. I grieved for how our futures would all be changed, how our dreams for our family would be different. All these things were real griefs. And this was the appropriate time to sorrow them. I mean, the healthy thing is to grieve what we lose when we lose it, no? Suppressing emotions doesn't really work out to well either, does it? Our grief was mostly limited to these things, the ones we were losing in the time we were losing them.

But at this time, also, things were going well for Joel. He was progressing and developing. I did feel sad about the lost future. Knowing his life would be shortened did make me sorrow. But it was very different from how I grieve and sorrow now. There was optimism about what Joel would do, what gains he might make. The memories that might be possible for us. Yes, this time was hard and sad, but I remember feeling optimistic too.

Then, as time went on, there were losses. We crested a hill, and now there wasn't much up, only more down. Joel lost his ability to eat orally. To hold his head up. To reach for a toy. I'm not going to list them all. Each of these things were a grief. Each of these were mourned. Some of this was about me. But a lot of it was about Joel. And how it hurt that he had lost something.

If you start from the beginning of my blog and read forward in time, I think you will see a slow change. As time goes on, and Joel's condition worsens, Joel's death slowly grows closer. And as this happens, the "colour" of my grief changes. This change is as inevitable to me as the seasons. I see the leaves changing colour. The air is getting colder out here. I could keep wearing my shorts and t-shirt, keep running through the sprinkler, but this will not stop the change in seasons. Eventually if I refuse to put on a warm coat, I will get frost bite.

And that is what part of this blog is. It is my warm coat. A safe place to explore and share thoughts and feelings. A warm coat will not stop winter, either. But it will make the cold more bearable. Survivable. Sometimes what I write here are my preparations, mental and emotional, for a long winter. It is true on one hand that nothing can prepare me. Yet it is also true that somehow this helps me come to terms with the things that are happening.

Through it all, though, I hope that I have also captured the beautiful and happy moments we have. I have tried to be honest about it all. And when I write about the pain and grief, I am trusting my readers to also keep in mind all the happy thoughts and feelings, so that no one will think I've become crippled with sorrow. And when I am brutally honest about the hard parts, you will realize that I am being transparent, and you will trust me that the joy and happiness I talk about are not faked, but as real as the difficulties I tell you of. I'm hoping my honesty will not scare you, but rather that you will learn to trust it. You'll realize that I am hiding as little as possible from you, and that I make it a rule to never lie.

It might be more helpful to talk about healthy grief, instead trying to put a time frame on it. Of course, even then, it is difficult to know what "healthy grief" looks like fore each person. Of course, healthy grief means that it is part of becoming healed, but when that is or what it looks like is also hard to figure out. Most of us would agree that grief that involves alcohol or drugs in order to cope with it, is likely not the most healthy way to deal. For me, if my grief kept me in bed all day and there was no one to look after my children, well, that would not be healthy. On the other hand, for people with no children to care for, I can't say that a few days in bed is "wrong." Obviously if grief keeps you from ever working again, there is a problem. On the other hand, it also makes sense that grieving people might need a few "sick days." It's not always clear, is it?

I'm trying to keep my grief as healthy as possible. It is a balancing act, to be sure, and it will only get more tricky as we go. So far, my family seems fairly happy and content. My marriage is actually in a good place, and I think Steve and I are as close as ever. Though at times my grief takes over the laundry and the dusting, it rarely takes over meal preparation and it NEVER keeps me from loving any of my three boys. I get out of bed every morning and keep the home together. Sometimes I can even spare a shoulder for someone else. That's the best I can do right now. I hope the rest of the world understands. To everything there is a season.