I am feeling a bit tired. I've been fighting off an infection myself (one of the reasons I'm afraid Joel has a virus) and I am now to the coughing stage. And all of this is very tiring.
We are still ok, though. Thanks once again for all the help. I find asking for help less then fun (though you can see I'm still very good at it. ;) ) It doesn't sit well to admit things are more than you can handle, to accept favours and help that you may never get to repay, and to wonder if you are "burdening" someone and they resent it.
From the beginning of this story, though, I could clearly see that I was going to be in over my head. I just decided to bite the bullet and admit that there was no way I'd be able to manage and deal with life with Joel all on my own. My family needed me through this, and I can't afford to burn out or end up collapsing myself.
And so, from the beginning, I have tried humility, and just asked people for help. I have just been honest on this blog. And then left it with God as to who took on the job of supporting me or who just couldn't or wouldn't do that. And God has taken super good care of us, through all of those of you who apparently like friendships with a bit of challenge worked in.
I could never do this with out God's help and without yours.
I'd call this a "story" but it doesn't really have a plot, so unless you are a huge Virginia Wolfe fan, I'm really stretching it. Here is my morning:
Steve gets up to the alarm and sets up Joel's morning water and then an hour later puts his morning feed on. He kisses me good bye and heads to work. Both Joel and I are sleeping nice and snug in our respective beds. I am dreading the moment I shall have to get out of bed and face the day. And the moment I shall have to sit up and start the morning coughing, with it's yucky metallic taste, and then start Joel's morning cough and I have no idea how his cough tastes to him.
Caeden wakes up and goes zooming around the house. I hear him in the bathroom, the living room...??? who knows were else. Finally, he comes into the bedroom. He wants "Lucky Charms" for breakfast. Evil makers of sugar cereal, may a giant size box fall on your head! I mumble something about eating a muffin FIRST. There is more mumbled conversation, which I don't remember, and Caeden buzzes off.
A temporary reprieve before he comes back to announce he has eaten the muffin and now needs some "Lucky Charms." So I get up. And try to find some organization in what seems like chaos. I no longer have any idea of the order, but somehow I manage to give Joel his morning medications, give Caeden the aforementioned cereal-like substitute, suction Joel a couple of times, swab his mouth, make myself coffee, check my email, put a load of laundry in, change Joel, continual comment to Caeden that the various "gifts" and "food items" he is giving me are indeed just the best thing Mommy has ever recieved, start Joel's feeding pump cleaning, throw some of the dishes on the counter into the dishwasher and start it, rinse out the suction, phone a friend to take Caeden for a visit, continual go check on Joel and/or thump his back/adjust his face mask, suction him... yeah. Chaos.
And then there is a call that the suction machine I had ordered can be delivered today. Good thing, because a little later there is a call from the respirology office. Yeah. They want to know if I still need the suction that they loaned to me on Saturday. And no, they didn't ask first "How is Joel? Sorry he is sick and hope he is feeling better." No. Just asked if I still needed the suction. Hello?? I might not need the suction because Joel had DIED?? Ever thought of that?? But maybe they had no idea how sick Joel was. They are not my favorite department. Which is one reason why I made sure to contact our case manager yesterday to find out about the other machine. So now I can send the respirology one back right away and it is done, and they better not phone about the CPAP because I feel a bad case of sarcasm coming on!
So the replacement machine is on the way and I think hmmm....... maybe a little personal hygiene is appropriate at this time. So I check myself in the mirror. Pj's not TOO icky, good enough. Quickly brush the teeth. Hmmmm ... the question of the hair. Right now it actually has this sort of cute and cool "beach hair" thing going on. It almost looks sexy. Except that I obviously have not been at the beach, and the PJ's are a big give away. But if I brush it now, it's just going to lose the cute rumpled look and now look all matted and greasy. Ok, compromise. Mostly brush it, and leave a bit of "rumple" in the very front to add some ooomph. Now hopefully the guy dropping off the suction doesn't think he's arrived at the Munster house and feels safe enough to hand me the new machine.
Thankfully, my good friend arrives a little later to take my little Eddie Munster to her house. And now I take Joel downstairs, change his jammies, set up some more fluid for his pump and sit with him on my lap. I thump him and try to suction him. It doesn't seem to do too much. I pray a little and sing a little. And it feels so nice and peaceful. The chaos is over for now. Joel is aware of his surroundings. As I stroke his head, his eyes close and he relaxes. Every now and then they drift open a bit as I change position or take his hand or stroke his back. Then they drift down again.
And I think, whew. I am so glad I'm at home with him. He is just so happy here.
My parents will show up any minute. Then, yes, I will take a shower and I will let my mom or dad hold Joel. I will try and organize and clean up a bit, and maybe fold the laundry. And then I will sit and cuddle Joel some more. Kathy is bringing me supper, so I can just hold Joel until Steve comes home.
There you have a brief glimpse into my life.
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