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!

Wednesday, January 6, 2010

Perfect, or Dead Frogs

Every now and then, I have a few days where I feel just yucky.

I have always known that I would never get "Mother of the Year" as an award. I have many failings as a person, and moms are people too, so there is definately a carry over effect.

But most of the time, I sort of think I do "ok." If you don't count the effects of Joel's illness, my boys are for the most part healthy and happy. I figure that Caeden behaves reasonably well for his age, and seems to have reached an appropriate level developmentally. I even think I do some things pretty good. Like I never lie to Caeden, and I am pretty good at understanding him and explaining stuff so he "gets" it.

Even now and then, though, I have a few days...

Because I will never be one of those "perfect" moms. You are out there, and I have a suspicion you know who you are!!! I mean the moms who are always dressed in "nice" pants, or at least new, stylish jeans, and a blouse or a pretty sweater. The ones who not only have smart hair cuts and pretty highlights, but also fixed their make up before they went out for groceries. I'm there in my stretchy pants, the only ones that fit now that I gained all the weight, and make up is reserved for "special" occasions.

Those moms that work out and stay in shape. They sweep their floor every single day. I've tried that once or twice, but the fact that crumbs would appear under my table about 20 minutes later just defeated me.

Their children are well dressed too. I am pretty sure that they have never gotten their child up in the morning and seen last night's chocolate cake still in the corners of a little mouth. Or let their little boy wear his pajamas ALL DAY LONG.

I think that they engage their children in "learning experiences" and don't just turn on Treehouse.

Ah me. These "perfect" moms bring their children to nursery school and remember everything. Like fundraisers. The ones I take home the papers for, put them down somewhere and never think of again until I see the sign on the door "fundraiser sheets due today." Never mind the fundraiser sheets, how about forgetting that fees are due??

At the Christmas party they brought little gift bags for every child! (which means they actually knew every child's name!!!) Never mind the gift and card for teacher. My card was at home. I was meaning to write a beautiful apology in it for the fact that my little boy has wet his pants about 5 times now and a big thank you for all of Mrs. Kim's patience in dealing with everything, but you know, I forgot! Until I got there, that is...

Then, 2 days ago, one of the frogs was dead... On top of all my other failings, it was too much. You would have thought that little frog was my pet of 20 years instead of 2 months. Thing is, I think I killed it. NO, NOT on PURPOSE! I am unmotivated, disorganized, a bit lax on cleanliness, but I am not cruel. (just don't talk to my husband, I think he might think I am cruel).

It was just one more thing I had been "meaning" to do for awhile, clean the frog tank. I think that I left it long enough to affect the ph balance and that might have been what did it. (in my defense, the tank is small, and needs a weekly cleaning)

I confess we got the frogs as a sort of "preparation" lesson for Caeden, thinking it very likely they would die before Joel. I suppose that must sound terrible, but really, it is kind... I wanted Caeden to lose something small as preparation and so I could discuss death a bit with him before something really huge and sad and overwhelming happened.

But I didn't want to KILL the frog. I didn't want it to be MY fault. And I didn't want it to die NOW. How could I let something like that happen to Caeden's little pet?? And I felt like just the most rotten terrible mother ever.

I feel like a walking disaster sometimes. You know the laws of physics? The one that says that everything returns to a level of disorganization unless force and energy are applied to it? (ok, that is a big paraphrase, but!! My major is English lit, not science) Well, sometimes I think that law has been really at work especially in my BRAIN. I think a huge level of disorganization has occurred there...

I don't think I was ever a person who "had it all together." But even less so now. And sometimes I really get down about it. I feel like a failure. I feel like a bad mother. I feel like it must be pretty pitiful when you can't remember a thank you card, you can't get your floor swept once a day (or once a week!), and you can't even keep a frog alive! And that is only the start of the list.

And even worse, I feel like everyone else knows it too. I wonder if all the other "perfect" mothers give an internal sigh and shake of their heads at my sad state...

When I worked at camp, way, way back, I had to learn a really hard lesson. I was put in charge of directing a camp (pretty crazy, can you believe that someone entrusted me with 48 little 6 to 8 year olds and 6 or 7 counselors???). Just about every day one of the things happened. Either someone came by and praised what I was doing up and down. Or someone came by and complained about what I was doing and said I wasn't doing things right.

Finally, I had to go and have a chat with God. Because people are great, but they are constantly evaluating us and sometimes they praise us if we measure up and sometimes they tear us down if we screw up. So I had to find my equilibrium with God. Cause no matter if I'm failing or succeeding, He loves me. He just wants me to keep trying and He doesn't measure success by our nice hairstyle, clothes, or even ability to remember basic human courtesies like thank you cards. He just measures the sincerity of our hearts, and our only job is to keep those hearts in the right place with Him. Something I struggle to remember each day...

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