Something about watching the Olympics while suffering from stress-induced insomnia makes one extremely introspective. Just getting that out there.
Yes, I haven’t been sleeping. Or rather, no. No, I haven’t been sleeping. Why, you may ask? I’ll answer with a question: Have you ever noticed that when something bad happens, lots of bad things tend to also happen at the exact same time? “When it rains, it pours”… my mom claims this as gospel truth, and I now know there is a reason behind the cliche.
So almost four weeks ago we found out that Annie had an uncommon, but not rare, kidney condition that explains her small size, poor appetite, and muscle weakness. We began a 4x/day regimen of a ridiculously high amount of oral medication to supply what her kidneys as yet cannot… and each day it has gotten more and more difficult to administer. We have tried everything — and I mean everything every doctor, nurse, mother, web site, Facebook friend, and random person on the street has suggested — to help her take the medication, but nothing has worked. We did see some benefits in the first couple of weeks: her appetite had improved a bit, and she seemed to have more energy… for example, she could now (finally!) do this:
(Yes, I know she’s almost 11 months old, and pushing herself up on her hands for an extended period of time is something that most babies can do at like four months, but until now the muscle weakness kept her from doing much on her stomach other than laying flat and screaming. So believe it or not, this was a huge step forward.)
But as the days wore on, she fought harder and harder against the meds, somehow scratched her throat so badly that it bled, and developed what the pediatrician called an “oral aversion” to not only the meds, but — you guessed it — food. You know, the thing the medicine was supposed to help? Yes, that. I finally called the doctor in mommy-desperation begging for answers, alternatives, anything that would help. And today, we got the news that (1) her lab results were probably wrong, creating an artificially low bicarbonate level; (2) she’ll have to get blood drawn AGAIN, probably at Children’s Hospital, so they can conduct a more sensitive test to confirm the RTA and have a better understanding of the amount of meds she actually needs, if any; and (3) if the RTA and need for meds is confirmed, we’ll likely have to put in an NG tube to make sure she’s getting the right amount… and who knows how long that will be needed. Frankly, at this point, if she still needs the meds Bryan and I would welcome the tube… and Annie probably would, too.
Now, I know there is much to be thankful for. There are so many families out there who get horrible news every day about their children’s health, and what Annie is dealing with is minor compared to their trials. And I do thank God every day that it wasn’t worse… that it’s not even the type of RTA that will be of a lifelong concern. But for this season, for all of us, it is still difficult.
So that’s been going on.
And then last week, Bryan found out that his (and his entire office’s) hours were being cut to 60%… accompanied, of course, by a similar cut in pay; he’s a structural engineer, and the entire construction industry (as many of you know) has been hit hard during these challenging economic times. We had been working and living at 88% pay for the past year and a half, so we had already taken any and all “fluff” out of the budget… so this hurts. A lot.
And in case you’d forgotten, we were planning to start the adoption process ASAP… in fact, we were planning to use our tax refund to pay for the application, the first agency fee, and the homestudy. Now we need that money just to survive through this season, and my momma-heart is broken. Completely and utterly. Yes, I know this is only a delay, that God’s timing is perfect, but still… my heart aches for my baby girl, even though I haven’t yet seen her. Somewhere in my heart I feel that she’s already in the world, growing in her first momma’s belly, and I long for her. That may seem strange, but that’s where I am, what I’m feeling. Just being honest here.
And then we all got sick. The boys first with bad colds, then we think Bryan may have had H1N1 flu, and I got a similar bug that has lasted this entire week. Puking while shoving a syringe down a screaming infant’s throat… not a grand combination there, let me tell you (sorry for the TMI). Again, not a huge deal in the big scheme of things, but it all piles up.
I guess what I’m trying to say — and the reason for the post title — is that I’m feeling pretty defeated right now. Hence the insomnia.
Yet I know — as I alluded to above — that our God is good. All the time. Despite, and through, our circumstances. He is all-knowing and completely sovereign over the highs and lows of life. And I do trust that our present trials are working for our ultimate good… somehow, some way. I just wish I could see a glimpse of the end of the tunnel, a small peek at the victory that is to come. Is that to much to ask? (rhetorical question… I know, I know.)
Thanks for listening to my venting. I shared because I appreciate your friendship — from near or far — and would covet your prayers for our little family.
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