Welcome

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..







WARNING:







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, June 8, 2010

Just a Little Party...

I guess you could say I was feeling sorry for myself today.

I woke up to the realization that Steve forgot to leave the car seat and Joel had appointments today. It was a gray day, hot, humid and gray. And not 45 minutes into my morning, the toilet plugged up and I had to plunge it. Enough said.

So things were not shaping up well.

It was rush, rush, rush. I don't do that well. But everything worked out fine, even if I was having a very bad hair day from all the humidity.

Then we got to our appointments. They were all in the same place, and they are not the appointments which I normally dread as the Rehab Centre for Children is full of really great staff and I just love the people who work there.

Which is why my emotions took me by surprise and I did some of that crying which I previously wrote about. And said that I wasn't going to let that embarrass me. Well, that is what I SAID I was going to do. But it still was hard, to cry like that in front of some of the staff. (and remember, all this crying was with really funny, fizzy hair!)

The pity party really had started earlier in the day, while I was rushing Caeden to nursery school, pushing Joel in the stroller and pulling Caeden in the wagon. Don't worry, this is easier than it sounds. I'm a pro.

Anyway, while I was on my way I was thinking about our summer, and how we wouldn't be able to go anywhere for a "vacation" and feelings sorry for myself and bad for Caeden. I really want to take him camping so badly, but I just don't want to leave Joel somewhere strange overnight... And I was feeling so sorry for myself that these were my choices, even for an overnight trip, never mind actually going somewhere for a week-end or week. Yup. Pity party.

But when I got to the Rehab Centre I saw some children in their walkers, cruising around. It was the adaptive equipment clinic. It was a beautiful sight. But I still felt bad, as it hit me over and over how Joel wouldn't be getting any of the walkers or chairs or standers. There I was with my bath chair for adjusting. And that was the extent of the equipment...

I did ok until the adaptive tech person came in to talk with me. Let me tell you about this lady. We have worked with her a few times now, and she really blows me away. She is like... hmmm... the eye of a hurricane, but in a nice way. She just has this quietness and stillness in her. I don't know how to express it, she just seems like a container of peace when she walks into the room. Like there was a storm, but it all went still...

So let me say that if there were someone that I'd feel ok crying in front of, it is her. She just seems so calm and peaceful and totally at ease with emotion. Which is likely part of the reason I lost it in front of her, when she asked me if there was any equipment they could help me with when it came to Joel.

Because all I had was a bath chair. And that is all I will ever really have.

Oh, sure, if Joel gets big enough they can give me a special stroller. If he gets that far, which I sort of doubt...

I was originally going to get them to adapt the wagon so that both Joel and Caeden can ride in it. Now I just don't see a point, as Joel is most comfortable on his side, and I think the stroller is the best bet for that. And, as previously noted, I have gotten really good at pushing a stroller and pulling a wagon at the same time.

So, I was feeling pretty sorry for myself and I had a few bouts of tears. In the office. In the van on the way home. In front of the computer before and during typing this up.

I'm really thankful for friends. My friend who drove me to the appointment. And talked to me the whole way back about some of her experiences as a foster mother. Which was great, as it distracted me from feeling sorry for myself and made me think of other people for awhile. Lots of hurting people out there besides myself.

And I met my friend Jen online. And had a good chat with her. I can share my heart with her, but I can't feel too sorry for myself, because Jen is the friend who lost her daughter just over a month ago. She reminds me that as bad as it feels that Joel can't really breathe well unless he is on his side, at least he is still happy and right now he is not "sick," as in with a germ.

Now I have released all my tears and shared most of my feelings. Whew. I'm even starting to feel hungry again, which is a good sign, because so far today I have only eaten a banana and drunk some coffee. So I better go and make some supper.

But not before I say thanks to my friends, all of them.

And say how much I respect my friends who have fostered children. They are my heroes. Because I do what I do for Joel because he's mine, I love him, and I haven't much other choice. But they deliberately chose to love and care for other peoples' children. Who have been hurt and damaged by life. And so come with lots of baggage and appointments and paper work, etc, etc. But these people parent them by choice. And love them. And make a big difference for good in other lives. That is my little plug. Think about it.

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