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!

Tuesday, January 26, 2010

Loss List

I haven't had much time to write lately, but I have respite this afternoon. It certainly is not that I don't have something to say, as sometimes the real difficulty lies in choosing which of many topics to go with.

This is one that I have been telling myself I'd write, oh, just about since I started the blog. It is a tough one though. So we will see. Right now I feel "strong", not like I will dissolve into tears, but this topic may undo me. And my poor respite worker will wonder at the strange noises emanating from the direction of the computer, but we will see. We will see. I promised myself anyway, and sooner or later I gotta keep the promise.

Don't read this if it is going to distress you. As the title suggests (if you notice the title), this one is my "loss list." It is sort of the opposite of "count your blessings," to be sure. I'm listing all the things that I am losing because of Joel's illness.

Some may feel that it is absolutely terrible to actually LIST things like that, and be offended that I would do the opposite of being positive and counting all I have. Well, sorry to offend you, but this is (strange I know) good for me. And don't worry. Another time I WILL write out all the good things in my life. I know they are many.

In fact, you may once again, if you can remember far enough back in my blog, find me contradictory. As I have previously written how my love for Joel has "shrunk" my feelings about my own losses from this disease. I've said it once and I will say it again, that is grief for you. On one hand, my love for Joel as he is, has lessened my own sadness and suffering through it all. On the other hand, I have lost so much and I somehow need to let you, and myself, acknowledge it.

And please don't do me the disservice of thinking that just because I have Caeden, my sorrow over what I have lost for Joel is somehow going to be less. That since I have experienced all these things once, it lessens my pain. Yes, I am grateful for Caeden. But we want what we want, the good things, for all our children. Each one is special. Each one is unique. And so I must still grieve these things FOR JOEL. Because Joel is special and unique.

If your life has only healthy children, then think of my loss list as your ultimate "count your blessings" list about your own children. I am sure you will be surprised at some of the things on my list. I was surprised when I was pained at loosing them... lots of things I had never thought of with Caeden. In fact, this list might get too long for one blog. We will see.

So, here we go. Listed in no particular order of importance and not chronological either.

My little boy will never see my face. He can not understand my smile and subtle grasp of expression is beyond him.

We will never do "tooth fairy" when he loses his teeth. He'll never look under a pillow with excitement for the money there.

In fact, he'll never have a piggy bank at all. He'll never sit in a shopping cart and whine for toys.

He'll never run with that little "pitter patter", that toddling, teetering, giggly run of a small child.

Presents of any kind, birthday, Christmas, whatever, will likely never have meaning for him. His interest in toys is small and selective, he can't rip off paper and right now has no interest in crumpling it. This makes birthdays very difficult for me.

There will be no license, no excitement about first time driving, no begging for the car, no getting dents and being afraid to tell us.

No first time at the theatre to see a cartoon, no excitement over the popcorn and the darkness.

I'll never get to have a late night spontaneous talk, or any "talk". I will never find out the more subtle nuances of his personality. There will not be any teen age sulks, or attitude. I'll never have a talk about love and responsibility.

I'll never see any crushes, whether tiny or tall. He'll never chase little girls around the park, or try hold hands when he has his first crush.

We will never share a favorite story. Or a joke.

There won't be any excitement about a first bike, or getting training wheels taken off.

I will never get a Mother's Day gift that he made himself just for me. I will never put up on the fridge the scribbly paper with the broccoli trees and circular sun that says "I lov yu mom."

I will never check for monsters under the bed or in the closet.

I'll never brag to another mom about the cute things he said. Or the "A" he got in school.

Or go to see him in the school play, or hear him play in the band.

We will never argue about how he promised if we paid for lessons, he'd practice the guitar. Or about how he doesn't pick up his room, or do his chores.

He'll never beg for a pet of any kind, nor will his goldfish die because he forgot to feed it.

There won't be any staring over the back of the pew at the people behind us in church.

We will never sing a song together.

He won't ask for his favorite disney character on his shoes, his lunch box, or his pjs.

There won't be any engagement, any wedding or any grandchildren.

He will never beg for one more time down the slide, or sit in a heap and cry when we have to leave the park.

Words I will never hear from him: "That's not fair", "I promise", "Why", "Please, please, please", "Your the best mom ever", "I love you"

My talks with the nursery teacher, kindergarten teacher, grade school teacher, all will be very, very different...

He'll never ask for his friends to come over for dinner, or to sleep over at night in the tent in the backyard.

We won't go fishing or canoeing together.

Steve and I won't ever grumble that now that he's in university, we never see him, or that he only comes home to do laundry, or that he still lives at home despite all our hints.

We will never need to drive him to sports, or watch any games. Or tell him he needs to get off the couch and STOP playing his video game.

I don't even know if my son will ever be able to put his own arms around me and give me a squeeze, though I know that he loves me very much.

That is a fraction of my list, but I am tired now. Whew. These things "take it out of me" in a good way, but they are also very much exhausting.

If you are still with me, maybe you are realizing how many little joys our children give us every day. I hope you can perhaps understand why my grief can not be "over" in just months. With every stage and age, there are new losses to mourn. Each and every thing on the list is a sorrow. They come up unexpectedly to bite at my heart. The sudden realization of something that has been lost. Each one requires that mourning period, some long, some short.

It is not that I think myself the one who is so hard done by. When I write this list, others are always "with me", in my mind. Because it reminds me of all the losses of so many other people. Friends who have lost husbands, or dealt with serious illness. So many people for whom this list will almost feel "personal" because they too have lost or are losing their child. Not just PBD's. Cancer, accidents, disasters, the list goes on.

Let us remember that just about everyone has a "loss list." Let's be patient with them. Let's give them time to grieve. Let's make sure to call them, to visit and listen. Sensitive. Let's be sensitive to the spirit of others, so we can feel it when they are sad. Let's make sure to love them, because it is certain we brought nothing into this world, and it is certain we will take nothing out. God wants us to do the things that have lasting value. He wants us to demonstrate an active kind of love...


  1. Grief will always be grief, difficult, a burden. And you are right, we do all experience it in various ways and at different times. The grief will still be there, but I think the burden is not quite as heavy when you share it. Thank you for sharing it with me...

  2. Amen to all you said. there is nothing wrong with just sitting and crying with someone. Your mom taught me that.