[full disclosure, I started this post over a week ago, so I hope you can track with me despite my publishing delay!]
Wow. Since I last checked in with you all, the entire month of December 2023 has come and gone.
Highlights:
- We successfully closed out our first semester of home school! (and reveled in this feat with matching jammies pictured above!)
- I celebrated 8 years of [mostly] blissful matrimony to the ineffable Dr. Katie Musser
- After some deliberation, my urologist informed me that my bone scan results were indeed normal
- Izzie was fitted for AFO’s (leg braces to help with standing/mobility), she also received her fancy-shmancy special needs wheel chair (and her communication device has been ordered!)
- After many years in retirement (our insurance company calls it a “sedentary lifestyle”)—I finally started exercising again (on purpose). Call me an optimist, but after 4 workouts, I definitely feel like my biceps are bigger…
Lowlights:
- We spent 10+ days on high alert as Izzie battled through a brutal bout with RSV
I think you could make a case that this was the hardest stretch of care-giving that we (well, mostly Katie) have gone through. (coupled with the fact that it fell smack dab over Christmas…) I lost count of the total number (as one does when sleep deprived), but it was definitely more than a week straight of all-nighters starting on the 21st of December. Katie was going to include this in an update that never got sent out, but we even tried at one point to make our all-nighters more fun like they are when you are in college (you know, with late night fast food or video game study breaks or what have you)—which is why she turned around at one point and I was eating cold left-over chicken nuggets at 1AM… That’s actually the most fun that we (well—…I) had that week.
Sadly, Christmas Eve and Christmas Day was the toughest stretch for little Izzie (and subsequently—for us). We tried our best to keep up the holiday cheer and merrymaking despite the near constant interruptions that caring for Izzie required, and eventually made it through—though not at all how we would have done it otherwise. We would all finally get gathered in the living room. Open a present or two, then Izzie would start screaming again, so Katie and I would rush back and tend to her needs. Get her settled finally, come back to the living room, open a few more, then rush back when her monitor alarm would go off. Then back for more. It was sad and stressful to say the least. We didn’t even have Christmas dinner (sorry, Mr. Scrooge, no succulent Christmas goose could be found at our table this year…), which is why I microwaved the last slice of quiche at 10PM for my Christmas dinner. It was an all out fight to keep Izzie’s oxygen saturation up, to keep her hydrated despite her vomiting, to keep her comfortable as best as we could, tracking her round-the-clock meds to fight her fever, round the clock breathing treatments, near constant laundry from soiled linens and clothes due to vomiting, suctioning out her congestion (which she hated and often led to her thrashing about wildly, which could lead to a bloody nose as she would impale herself on the tip of the wand…). We determined that Izzie (… or maybe it was the RSV) was the Grinch that stole Christmas this year…
While we all prefer to see pictures of her squishy, jubilant smile, the one above paints an honest portrait of the inevitable dark days of caregiving. Keeping up with her often required 4 hands (Dr. Octopus would have made a fantastic night nurse…minus the general villainy part…). If you picked her up to sit down with her, for example, she was a tangle of oxygen lines, pulse oximeter cords, g-tube feeding line, blankets, spit up cloths—then throw in: Oh, it’s time for Tylenol again. So the 2nd person would run and get that and draw it up and syringe it in the med port of her g-tube and flush it down. It was a real team effort. She was so congested, her little oxygen nasal cannula wasn’t always delivering O2 adequately. So we would switch her to the mask. But that was so bulky, it was pretty easy for her to dislodge it, which would trigger the alarm on her SAT monitor when her oxygen would dip. So it was a constant effort, to say the least. Most nights, we would try to get her settled as best as we could, and we would get back in bed. Maybe we lasted 10 seconds in bed, maybe 1 hour—before she needed us again. It was really, really hard.
There were essentially hundreds of decisions to make at any given moment depending on her status. If her oxygen saturation was dipping, for example—do we need to turn up the concentrator? is it kinked anywhere? is she too congested currently? should we suction her again? is it time to nebulize her yet? should we put her on the tank instead? or switch out the cannula for the mask? or is the pulse oximeter sweaty and not reading accurately? should we take her in to the ER? or call the on-call nurse? has she pooped today yet? is she just backed up? is it stomach pain or gas pain? is the pulse ox not reading accurately because she’s squirming so much? do we need to retape it in position? or move it to the other foot? or do we need to replace it altogether? do we just need to reposition her? or give her gas drops? let’s try to hold her upright and see if she will settle... We would shift her position and her SATs would bump up to 100. Then a few minutes later we would run through it all over again. Or she would vomit right after getting her next dose of meds. How much medicine did she keep down? do we re-dose her? would that overdose her? I cannot emphasize to you enough just how much that completely wears you out…
One night, I was up with her from 12AM until 4:30AM (Yes, Katie had already been up with her off and [mostly] on until midnight). We finally got her settled (after Katie had a stroke of genius on running her cannula with her oxygen concentrator and hooking up the mask to her oxygen tank and running that on top of everything for a double whammy respiratory support. This managed to finally bump her SATs up enough for us to sleep.) Within 10 minutes of being asleep, Addie came in and woke me up saying that she couldn’t find her sock. It was one of those parenting moments where you have to remind yourself that things will not always be this way forever.
Prior to the double oxygen solution, I spent much of that night at war within myself. You know when you are so tired that your eyes burn? But you can’t sleep because any second you have to pounce back out of bed. So I ended up just laying there, staring at her SATs, unable to settle enough to fall asleep. I just laid there and watched them tick—94…93…91…92…92…93…90…88 [alarm goes off]…87…86…91 [alarm clicks silent]…92…93…92…94…
I was just staring at these numbers in the dead of night—just begging God to intervene. Just begging for mercy. Please, God, keep her oxygen numbers above 93.
…93…93…92…91….92…93….90…91…
Have Mercy! God! I know you can do it! Please!
When was the last time you begged God for something at 2:00AM?
I don’t think any of us are at our best at 2:00AM (except for maybe raccoons and other nocturnal species…). Our base-ness comes out. Our selfishness. Our pride. Our fury.
That night, I felt angry with God (I believe, for the first time in my life).
He is all-powerful. Infinite. Above all things. Sovereign and in full control. Giver of life in abundance! He is love defined! He is merciful and perfectly just. He could instantly heal Izzie, not only from RSV but from trisomy 18 as well. Or at the very least, he could keep her dang SATs above 93 so we could all get some much needed sleep!
But he didn’t.
And I was angry—my faith warring inside of me.
God is also perfectly wise. He knows the end from the beginning. He knows what we need before we say a word. He is trustworthy. He is the sustainer of all things. Every breath is by his will. He gives us strength when we are weak. He is peace. He is patient to meet us in those dark places, in our pain and our weary wrath. He is there—present. A God who walks with us, sits with us, weeps with us. Who am I to dare to question why he does or does not intervene at times? I know that he is good, that his steadfast love endures forever.
That night, I re-framed my perspective. I quieted the pity party in my heart (it was a pity rager…, in multiple senses). I focused on my breathing. Slow, and steady. In, then out.
I breathed in: BECAUSE OF THE LORD’S GREAT LOVE
I breathed out: WE ARE NOT CONSUMED.
Again, and again. Slowly, I worked my way through the next few lines.
For his compassions never fail.
They are new every morning.
Great is your faithfulness. (Lamentations 3:22-23)
Wendell Kimbrough beautifully captures Lamentations 3 in this song. It has been one that has repeatedly stilled my anxious and weary heart in the dark places of 2023.
Happy New Year (and Merry Christmas—in case you missed it this year like we did!).
DAVID SCOT MUSSER 