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!





Monday, September 20, 2010

Friends

Today ended in a big disappointment. Joel has been in hospital ever since the last blog I wrote, but I really thought he'd be coming home tomorrow. Turns out I was wrong...

He's looking really good and doing really good, and I'm still not sure why he was looking as bad as he did on Friday, but I still think it was connected to the stress of the sleep study. Thing is, when we brought him into emerg, one of the docs thought Joel's neck seemed stiff. Then heard that Joel had a temperature that morning. And thought "Meningitis." Which is (oh my favorite word) reasonable. Though Joel did NOT have a fever when we brought him in, and was actually already doing much better. In fact, he was completely off oxygen by the time he was admitted.

The problem was, his clotting factor was too high for them to do a lumbar puncture, with is the only way to rule out meningitis. So they started potent antibiotics, just in case. Little did I foresee the outcome this would have... (of course, they didn't warn me that these were IV antibiotics which Joel would likely HAVE to finish unless they could rule out the meningitis).

I'm pretty sure there is no way a kid with a PBD like Joel could sprout a fever and stiff neck from meningitis and then lose the fever and look better, even BEFORE the antibiotics, so I'm really sure it was NOT meningitis, never mind that he was absolutely seizure free for the 16 hours before admission and that would be pretty amazing for a case of meningitis in a kid whose seizures haven't even been controlled with meds.

Nevertheless, we have started something and unless there is some proof that Joel did not have this illness, we will be stuck in hospital for two weeks on a course of IV antibiotics and this rips my gut out. I can tolerate Joel in the hospital when he's not feeling well, in part because he usually just sleeps. He sleeps and is totally oblivious of my presence, or lack thereof. But the thought of leaving him there for the evening and night, alert and aware and bored and lonely, UGH! Not to mention that I worry a bit, because at home he gets held upright at times during the day, moved around and patted and such. I worry about him just lying there at the hospital, when I'd be holding him pretty much all evening at home.

So it was a really big disappointment for me.

But here is something that is NOT disappointing. I have the best group of friends EVER.

I have been praying for some good, close friends for a few years now. Even Pre-Joel. Maybe that sounds pretty pitiful, needing to pray for friends, like you can't make em on your own. Well, so be it. It's the truth.

I had been waaaaaay up north, and then got married up there, and then returned to the city. After four years away, friends had moved away physically and even more had grown apart figuratively. They got married, made new friends, had new interests. The large pool of friends I once had was severely diminished. And I really missed having a few really good, really close friends.

So I prayed for some. And met some good people here and there. But no Best Friend types. I was still feeling lonely, and still wishing for some girls to hang out with. It seemed to take God a long time.

But finally, a year ago, Steve and I started going to this really amazing little church. I've mentioned it before, and how tiny it is. It's also full of really warm and caring people, people who continue to amaze me the way Jesus' love just flows out of them. These people have taken Steve and I in, as if they had always known us, as if we were old friends and no need to stand on ceremony here.

And as much as I can not believe it, there is a group of terrific ladies who are my friends and who are there to watch my back whenever things go nuts with Joel. I keep waiting for them to start backing out, one by one. I thought this time, with a two week stretch ahead, they surely would. I can't believe no one has said "Sorry, I can't watch Caeden anymore, I have five kids and one of them is just a newborn, can someone else do it?" (Yes, one of my friends has five kids, one of whom is just a month or two old, and yes, she STILL takes a turn watching Caeden) I can't believe people still offer rides, or meals, or babysit. I'd have thought by now the statute of limitations on kindness would have come into effect.

And I really don't know what I would have done last spring, or what I would do right now if it wasn't for them. I'm pretty sure we'd never have been able to do it.

It seems God brought these friends into my life just at the right time, when I needed them most. Not just to babysit, or help out in practical ways. These friends listen and laugh with me. They encourage me on my journey and help me keep closer to God. They are a wonderful answer to prayer.

Of course, they are not just friends, they are family too.

So here is a huge, HUGE thank you to all my brothers and sisters at Faith Community Church. Thanks for caring, for praying, for listening, for babysitting, for playing with my boy, for loving my family, for supper, for beans and beet pickles, for rides, for coming to birthday parties and taking us out. Thanks for being there, the body of Christ, in the flesh.

2 comments:

  1. Yeah for good family friends who walk in the Lords footsteps with you! Blessings to you all an thank you for being there for Karen...both emotionally and physically. Having needles and thread around when mending is needed IS a really great thing.

    Hang in there and God Bless you and your friends/family. Graham blow kisses to you.

    Tracy
    'Angel' Graham's Momma

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  2. I've always said I could never survive without my friends....I have been so blessed to have a handful of people who have become family. I'm so glad you have that now too.

    I will be praying for you and for Joel.
    kd

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