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, March 18, 2011

Ode to Home

Yes, I thought I'd write a little blog about how great it is to be home, as compared to being in the hospital. It will make me feel better about this whole thing, just comparing the two, and remembering the differences.

Joel loves to be at home. He used to get really happy and smiley when we'd bring him home from the hospital. He is a smart little boy, and very aware of his surroundings.

At home, I can hold him for hours without getting uncomfortable. We have our "comfy" place on the couch. We have pillows all arranged so my arm doesn't get tired, and to cushion his body. He snuggles in to me and rests for an hour or two at a time. At the hospital, even half an hour is getting uncomfortable. I need to put him down a lot and take breaks and walk around to ease my back.

At home I can sing to Joel and cuddle him without any interruptions. It's just us. No one walks in to check his pulse or temperature. I can stay in the "cuddle place" in my mind and don't have to worry about switching in to "doctor mode" to discuss something.

At home, I can give meds as they are needed, when they are needed. If Joel is in more pain, I don't have to track down a nurse to find a doctor to ask to order some meds which then must be sent up from the pharmacy. I just give him some. And I don't have to ask if I want to try giving him less pain medication either, so he can be more wakeful. I can adjust his oxygen up or down, or take off the nasal prongs for awhile if I wish. But the pain medication is the best part of home. Because when you feel bad, even waiting 15 minutes for medication to come, is just waiting so long.

At home, there are soft blankets underneath Joel, comfy clothes on him, and soft blankets on top, if needed. It is so cosy. There are gentle strokes on the head and hands. There are never any pokes. There is never a need to be in "hospital jammies" due to an IV. And hospital blankets and beds are awful. At home we have soft "furry" blankets under us and around us.

Home smells like home. There are yummy cooking smells. Mommy smells. Daddy smells. Caeden smells. And home smells. It all smells very nice, comfy and warm.

At home, we are so flexible. We sleep if we are tired, and no one wakes us up to measure us or weigh us or press our bellies. No one comes in at 8AM and says it's time to have a bath. We wash our face when it's convenient. And if we don't wash our hair, no one fusses about it.

At home, either Mommy or Daddy are always close by. They never have to go out to get supper, they cook it and eat it in the same room we are. We can hear the voices of the family talking together every night at dinner time. At home, Daddy can say good bye to us each morning before he goes to work, and kiss our cheek. We hear him all evening long, he holds us, talks to us and kisses us. Not like the hospital where he can't get a chance to duck in more than half an hour most days of the week.

Home is restful and peaceful, even with a TV on and a brother blaring! It feels more like love and less like stress. Our daily schedule has only one rule: lots of cuddle time! Home is a family place, a warm place, and a love place.

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