This blog is my record of my journey with my son who had a rare, and eventually fatal metabolic illness. It is the story of the last year and a half of his life, his death, and after. I have shared this journey this in the hopes that is will not only help me come to terms with the realities, but also that someone along the way may find it helpful, as they face a similar journey.

This is my place to comment on events, blow off steam, encourage myself (and maybe you), share frustrations, show my love, grieve my losses, express my hopes, and if I am lucky, maybe figure out some of this crazy place we call life on earth.

The content might sometimes get a little heavy. As an understatement..


People who are grieving may write sad or difficult things and bring you down. This blog may not be for the faint of stomach or of heart. Read with caution and at your own risk.

If you are new to this blog, I suggest reading it from oldest to newest. It isn't necessary, as what I write is complete in itself. But this blog is sort of the result of the "journey" I'm going on, and I think it sort of "flows" better from oldest to newest.

I do hope that in the end you will find, in spite of all the difficult and heartbreaking things, things that are worth contemplating.

Welcome along!

Friday, October 7, 2011

Update on me!

Wow, grief just suddenly hit me like a wall.  Again, should have guessed it might be coming, and maybe I did, but it still took me so much by surprise.  And just when I think that this blog might finally stop being about me, I'm back on here, detailing my sorrow!

In the back corners of my mind, I have been holding the knowledge that Thanksgiving is coming and that it is going to be the first REALLY hard holiday without Joel.  And my Dad.  My Dad so often gets added as a side note.  My grief for him usually just comes in little flashes, in between this and that.  When it comes to grief, I just want to insist "One at a time!"  Anyway, I was aware that Thanksgiving was coming.  Last year was the best and most special Thanksgiving I ever had.  This one will be so different for me...

So, I have been thinking about going back to last year and reading through Sept/Oct blogs, and dealing with the memories, etc.  Last fall was the horrible time where Joel was in hospital for three weeks, and a few times I thought he was going to die.  Right about this date last year, he finally came home, and we had the best Thanksgiving ever.

I hadn't done that though.  Go back over the blogs.  Avoiding it, I guess.  Ha!  Here I am, saying I am "intentional" about my grief, but I was avoiding this.  Just wanting to enjoy my beautiful fall, and to support my husband who is working hard in a stressful job.

Yesterday was a really good day.  Steve had a good day at work.  Caeden and I had a good day at home.  Caeden visited his cousins (whom he LOVES) in the evening while Steve and I went with church friends to see the movie "Courageous."  The movie was really good.  A child dies in it, however.  Pretty much putting the word "child" and the word "die" together in a sentence will bring me to tears.  So I sat in the theatre and tears were streaming down my face. 

Friends asked if it was hard for us to watch the movie because of that.  Not really.  Emotions and crying just happen for me, day to day.  And if there is something hard to watch, it is more watching my PBD friend's children, day to day decline.  And month by month, another child dies.  THAT is the hard thing to watch, real children, not fictional ones.  But the movie primed the pump, so to speak.

When I got home, I wrote a comment to a friend with a medical question, telling her a bit about Joel's last hospital stay a year ago.  Which also got me back on that time.

So when I got into bed, and Steve started snoring, I found myself ready for a great, big weep.  I fought back the tears.  I got out of bed for a few minutes and tried again.  Still fighting tears.  I should have just gotten up and gone with it, but since it was midnight, I really was stubborn about wanting to sleep, instead of to weep.

This morning I woke up from a dream.  At first, in my dream, it was three days before Joel died.  I was so excited to get up and start Joel's water and his feeding.  I was thinking, "Maybe if I get some extra water in him, he'll be better able to fight things off."  I could not wait to hold him in my arms again, just hold him and love him.  But then, in my dream, I looked at the time and it was 1pm.  ONE PM!  How had I slept in that long?!  How had I not heard Joel, making noises or crying?  Was he OK?  So I got up and searched.  I looked in his crib and in both his bassinets but he was no where to be found.  I was calling out, so distressed, for Steve to help me find Joel.  Then Steve came and told me that it was actually three days AFTER Joel had died...

So I woke to find the grief that I had so "valiantly" and uselessly pressed down was really just WAITING for me, like a huge sentient lump, to jump on my as soon as I moved.  Caeden was still sleeping this morning as I got up and went and had my grief.  I prefer coffee in the morning, but if grief is waiting, you might as well attend to it.  Now I have my nice coffee, as I sit here typing.  I guess today will be a crying sort of day.

And it hurts, it really does.  But again, I am OK with that.  I know that this is part of it all.  I know that sorrow is my companion now.  She is an excellent teacher.  It is only grief.  And so today I will likely have swollen eyes the day long.  I will drop Caeden off at nursery school, looking like less than a million dollars, that's OK.  I will have to try to drink lots and lots, so that I don't get a "crying headache."  I will have to be vigilant so that I don't end up leaving a pile of Kleenex somewhere, forgotten.

This week I cleaned off the top of my fridge.  Looks nice.  I sorted some papers and shredded old ones.  I baked cookies. I have found this last month that I have been "more productive" and energetic then the previous months.  I have more days where I feel like I have "done" something. 

Today is not going to be that sort of day.  Today is going to be a grieving day, and I'm going to go easy on myself.  I'm still going to need to have days like this.  I might need a day like this from time to time for my whole life, because things have forever changed for me.  That is painful, but not bad. 

So today I'm going to get out Caeden's Lego, and I'm going to sort it out into the different sets.  Seriously.  That is my plan for the day.  It is something that will interest Caeden if he needs my company.  And it is enough of a mental challenge to keep away too much boredom, or circular thinking, while also being very relaxing and non-demanding.  It is a good grieving day activity.

I know that some of you out there pray for me.  Thank you.  When you pray for me, I ask not that you pray that my pain would be taken away.  I can assure you, in any case, that this will not happen.  I ask that in this all, I can still find ways to love and serve others.  That I will grieve when I need to, and rest from it wisely.  That I will be able to learn the lessons of compassion and gentleness that God is using this sorrow to teach me.  And think of me and my family especially on this Thanksgiving weekend.  We still have much to be thankful for.  Pray that we can remember those things and celebrate them, even in our sorrow.

1 comment:

  1. This is a beautiful post Karen. I think you are handling your grief the best you can. I recently read a comment on a bereaved mother's facebook that "there are no rules" to grief. YOu have to grieve how your mind and heart sees fit. I do still pray for you and I will definitely pray for you to enjoy the blessings this thanksgiving even as you remember your sweet Joel.