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, September 14, 2010

Rain

Something horrid happened last night. Joel was on his fifth happy day, and I was loving it. In the evening I was holding him and we were "chatting" and playing. He was lying against me and he got really excited. When he does that he sort of waves his arms. And one of those arms was against me. I don't know what happened, but I think I felt a little something "give" and he started screaming.

Don't worry, I don't think anything actually broke. He cried really hard for about 2o minutes, and I cried too. I felt so awful, and he had been so happy just moments before. It was horrible to see that happy little face register the shock and then the pain. And that was the end of the happy playing for the rest of the evening.

It doesn't hurt him to move it now, I don't know what happened, he just got it twisted wrong or something. But it is the sort of thing that I dread happening. The reason I dress him so carefully. When I change him, I don't lift him by the ankles, I lift him under the knees. When I take his temperature under his arm, I lift that thin little limb so carefully. If I need to bend a leg or arm, it is very slowly and very cautiously.

Getting him in and out of the car seat is an endeavor I absolutely dread. I can get him in ok, most of the time, but getting him out, I just can't seem to do it without making him cry. It's like his soft little body just melts to the seat and I'm desperately trying to spatula my fingers under him without pinching him or twisting a bone, or compressing his spine, all the while trying to do it without having his head pitch forward or to the side. If you own a spatula, you know that it is shaped nothing like fingers.

It was a bad end to an otherwise great day. I'm still walking on eggshells, dreading that he might actually have another bone bruise which will make him unhappy for a week again.

Susan, thank you for the song you sent. The lyrics are beautiful. I've had another song in my heart lately and I'm going to end on that note, I think.

"Our Hope Endures"
Natalie Grant
You would think only so much can go wrong
Calamity only strikes once
And you assume this one has suffered her share
Life will be kinder from here
Oh, but sometimes the sun stays hidden for years
Sometimes the sky rains night after night
When will it clear?
But our Hope endures the worst of conditions
It's more than our optimism
Let the earth quake
Our Hope is unchanged
How do we comprehend peace within pain?
Or joy at a good man's wake?
Walk a mile with the woman whose body is torn
with illness but she marches on
Oh, 'cause sometimes the sun stays hidden for years
Sometimes the sky rains night after night
When will it clear?
But our Hope endures the worst of conditions
It's more than our optimism
Let the earth quake
Our Hope is unchanged
Emmanuel, God is with us
El Shaddai, all sufficient
We never walk alone
And this is our hope
I'm so glad I never walk alone. 'Cause sometimes the sun stays hidden for years...

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