The last weeks weeks have seen an explosion of progress in speech and PT. I need to write up a post on all of the advances he's made. It's exciting to see progress! Job has also been enjoying the outside with his brothers as the weather has cooperated.
I'm fighting hard against my anxiety about Job's fourth cath (next Thursday). I despise caths. It's irrational that I fear them more than, say, open heart surgery. I guess it's hard to send him off under anesthesia whatever the reason. Perhaps the reason caths bother me so much is because they are a big deal (and have had some hard consequences for Job, clot wise!) but aren't necessarily thought of as a big deal.
I do want answers about WHY he still needs oxygen. But what if that answer means he will stay on oxygen indefinitely (as seems to be a very likely possibility)?
So I'm also fighting against a great deal of bitter disappointment. I wanted him off oxygen in the OR back in September! Certainly nothing about Job's life has gone according to my plan, but I got so excited when we started weaning off oxygen following his March surgery! Sometimes it seems as if it would hurt less if I didn't hope for things like weaning off oxygen support.
I'm sure my emotional turmoil has only exacerbated my weariness, but it's been exhausting month running around to so many appointments. I believe I counted 20 in the month of June? We'll see what the cath results are and what that means for Job's care, but we be able to drop down to a mere 8-10 appointments/month for July and August.
But I also just get tired of suffering through this burden sometimes, beyond the daily hard work of it. An emotional or spiritual exhaustion, perhaps.
Perhaps I can use last night as an example. Though I had placed an order earlier in the week, I hadn't heard from home care services about the delivery of Job's new set of cannulas. I called earlier in the morning, but didn't hear back. Job had the cannula he was wearing, so though I didn't have a back up, I wasn't particularly concerned.
Until he broke it at 7pm on a Friday night. So I made all of the phone calls and did all the things to set up an emergency delivery. Not a small amount of work, but I was just so sad and frustrated that I had to do any of it at all. I was feeling sorry for myself and just sick of doing any of this medical stuff.
In that frame of mind, I was sitting in the front yard waiting for the delivery and listening to a John Piper sermon on 2 Corinthians: "16 So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. 17 For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, 18 as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal."
It's a sweet reminder to me that renewal has to happen daily, because I get depleted daily. I think I forget that sometimes and get frustrated that I can't do it all on my own strength. Which, of course I can't! I also needed the reminder that our suffering isn't meaningless. Sometimes it feels meaningless. And just cruel, actually.
I think of "good" as meaning something I like and I want rather than meaning good FOR me, for my soul. And for Job's soul. HLHS is a light and momentary affliction compared to the weight and eternality of Glory. I don't say that flippantly. I also don't say it confidently. But I say it because it's true and I need to renew my perspective by speaking truth to myself.
The line "for my good and Your glory" has been a comfort to me this year, a purpose statement, if you will. But I had forgotten it this week. I'm sure I'll forget it again too, because it's hard to lift my eyes up off of myself most of the time.
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