And here is a boo-boo, and there is a boo-boo...

Sorry, don't know what got into me with that title.  Sometimes I have a dark sense of humour.  OK, a lot of times I have a dark sense of humour.  Even to myself.  But it helps me get by.  Even if I can't actually laugh, at least a smile is good.

So here I go, naming some peas, or counting my boo-boos, or whatever it is.

There is a "boo-boo" where I wonder if I could have changed something in the last two weeks of Joel's life to keep him here with me longer.  I think it has mostly healed over.  I thought about it most in the first months.  I had to really examine it, I had to feel really honest about the answer, I knew, or I'd never be free of it.  So I worked through it really painstakingly a few times.  Going over the last two weeks of his life.  Trying to see what I could have changed.

After doing that the first time, it never comes back as hard.  Sometimes it comes back to me, because (if you can BELIEVE this) I have forgotten a detail of that time.  Like I actually forgot, for a little while, that I had brought Joel in to emerg to be checked out the week before his O2 levels dropped like a stone.  All of a sudden I found myself thinking, "Hey he was on almost continuous O2 for the last weeks, and I never checked that change out!"  Then I went over it again, and it came back to me, oh yes, I did bring him in... and they did x-rays.

I'm so glad for this blog, for that reason.  Anytime I get muddled, and think I forgot or didn't do something I could have to help him, I can go back over what I did/thought/felt and it helps me.  So far I find I need to do that less and less.  But if the need comes back strongly at any time, it is here, recorded for me. 

And of course, there is the part where I say "If I had done something different, might he be with me NOW??" and the truth is, the farther I go from his death, the less likely that question could be a yes... Even if he had staved off that last infection, chances are that right now I'd be right about to lose him, or would still have lost him by now.

Then, for awhile, the "boo-boo" that hurt the most was Joel's bones.  All the buckle fractures and the spinal compressions.  They haunted me.  The picture of the two times when I know I was holding him when it happened, just come to my mind.  And it hurts me.  I really never grieved those times when they happened.  I couldn't.  I had to make Joel happy and comfortable, and I couldn't afford to have the horror of the moments at the front of my brain.  So now they come out.

Along with wondering if I could have changed that part of things.  There are infusions that help with bone density.  None of Joel's doctors ever thought of it or mentioned them to me.  I don't know if Joel would have been a good candidate for the treatments or not, but by the time I had really heard about it, it was too late for Joel.  I know it wasn't my fault, but it is a regret that I live with.  His weak bones caused him so much pain...

Then there is the last hospital stay, back last fall.  I had to deal with the pain and regret that I wasn't there for Joel 24/7.  I don't feel as strongly about the other times in the hospital when I went home for the night.  But I do about those three weeks.  Partly because that is when Joel got the pressure sore on his head, which would have been prevented if I had stayed there overnight.  I regretted greatly losing those three weeks of evening times with him, evenings were usually my best time with him.  And so I grieve each of those lost times, even though I don't know if I'd have stayed sane if I had stayed 24/7 for those crazy three weeks.

There is the pain I have to work through about whether or not I should have stopped doing P/T directed on skills acquisition, on whether I could have done more that first year, or whether I could have tried harder to keep going...because I know that P/T is really beneficial to PBD kids, and might even slow the regression process.  And so then I have to count all those peas.  All the times it literally became impossible to do P/T with Joel.  Like when he stopped eating and just slept all day.  And when he got his GT surgery and then had a couple of weeks after of feeding/puking trouble.  And then when he had his spinal compression/severe irritability and again ended up basically sleeping away a couple of months.    I could go on and on with all those peas, each one is a jagged thorn ripping into my heart.

And there are a whole bunch of other ones, smaller and larger.  Like wishing I had insisted on getting his adrenals checked in the spring when the breathing trouble started.  Or that I had been able to sing to him more.  Or realized that he liked HOT water sooner, so he could have enjoyed baths more.  Feeding him orally more than I did. 



And what I have been mostly doing in the last five months is clipping off those thorns.  It is painful work.  I can't really describe how much those thorns hurt me.  But I am working on them.  As I face them, examine them, tear them apart piece by piece, slowly accept what I could not change, and forgive anything I did in ignorance or over tiredness, they hurt less.

I am guessing they will return to haunt me from time to time.  I am guessing that around the start of March I will once again need to go over Joel's last month.  I am guessing that in January I will be grieving that we never got Joel his hot tub, as I will have been thinking of our hot tub "Staycation."  I am expecting to rework it all, but it seems like each time there are less thorns that have grown back.

It is no wonder, really, that only now has missing him started in earnest.  I haven't really been able to feel the thorns of missing him in the roses of my memories, because of all the other thorns.  Some days it seems there are so many thorns and so few roses!!

You can imagine the emotional energy expended in all of this.  No wonder I am so tired, so often.  And why sometimes I am so vague.  I wrote a friend an email to explain/apologize why I couldn't seem to remember when she sent me an e-card.  Then when she came up to me to tell me that I didn't need to explain, I had totally forgotten that I had written her an email about it. 

In fact, many, many times I have gone online to write someone and promptly forgotten.  I can't seem to grasp things mentally if I am not firmly and directly in their context.  By which I mean that if you ask me about an email when I am sitting at the computer, I will know what you are talking about.  But if you ask me anywhere else, I will not have a clue!  This is why it might seem like it takes me ages to respond to you. 

Details slip through my mind like water.  It feels like my brain is broken.  Maybe it is more like a "virus" has taken over.  I won't say it is a hostile program.  But it has commandeered my mind for its' own purposes.  I can't hold on to details like appointments, or your age or birthday, or when your baby is due, or things I have already told you TWICE, because my mind is so busy holding on to how many times I tried to do O/T with my son, or when I first realized his pain was from his weak bones, etc., etc., etc.  This virus that has taken over my brain's programming will have to run its' course.  It can't be removed without damage to my hard drive.

My apologies to you all for having to live with things like that for awhile.  I know most of you understand.  Feel free to help me out by supplying details I might have forgotten, if you think of it.  It seems this blog is now about TWO topics, something I usually avoid.  Oh well.  It is now about the things that have been taking my emotional and mental energy and about what that loss of emotional and mental energy does to my brain...  The first part was more for me, and the second part was more for you.  So maybe I should have written about them in reverse order!

Anyway, I have spelled out some of the peas I have been counting.  I think it does help me... it sort of feels like some kind of progress, even though I know that I'll very likely have to count some version of them again in the future.  Like I quoted, grief is a circular staircase.  You might be covering the same area, but at least you are going up.  Eventually.