We received word yesterday that the results of Josiah’s Sitz marker test were not good. The Sitz marker tests GI functionality. A normal person would not have any markers left in their body- they would have passed through the GI tract in the given five days. All of Josiah’s markers stopped in his upper colon (closest to his stomach), which shows, conclusively, that his GI tract is not working and that he has motility issues (muscles that don’t work).
What we know right now is that we will be headed back in to the hospital in the next few weeks, but the doctors are conferring right now about what they want to do and in what order. They really don’t like to go in surgically more than they have to, so they are planning the ‘attack’ so to speak. I think it’s pretty certain at this point that he will have a c-tube placed, but they want to be sure of his baseline functionality before they do that. That c-tube placement will be at least a week in the hospital; this in addition to any more testing they want to do.
Which means…we’re on a very different road than we were expecting this Spring.
I’m feeling a bit scattered. All this new assessment with Josiah came on the tail of a very intense February of well-child checkups, dentist, and optometrist appointments, plus Ellianna’s normal transfusions. There were so many details to track across so many kids (who are also seeing specialists)…and you can imagine how our house and normal rhythms got off. And then he was admitted, and we all had to keep ‘on the jump’ as the old saying goes. I was deep cleaning some woefully un-attended things on Monday, and I said to my husband that I felt that there were a few projects I felt I could not move forward with until we knew for sure what the results of Josiah’s test were. Sure enough, we’ve still got quite a bit of upheaval to go. Things just feel all over the place. As much as I decry the smart-phone addiction, I can’t imagine where I would be right now without this little brain dinging in my pocket reminding me of the next appointment or the grocery need or what have you.
So here we go…new adventures await. Thank you for your continued prayers.
I feel at a crossroads with our kids. There are many such crossroads in parenting, of course, so many of them that we may hardly notice them. This choice or that choice, that time spent or frittered away, the yes, the no. But the last few weeks, I feel like I see them anew. Maybe it’s the sun warming our skin and the time we’re spending out of doors again. Maybe it’s that we’ve finally had some time to spend together uninterrupted, time to take long hikes and watch another child learn to ride their bike. Maybe it’s all of that and none of that. I just see my kids and think, Wow. Would you look at you? How tall you are! Character traits that had run below the surface un-noticed before: the way that kid always listens and has compassion for his siblings, always the one that falls behind to hold Ellianna’s hand and guide her. The way another child finds joy and laughter in everything, even the most trying of times. It’s all there, it’s always been there, but somehow we get these moments where our vision is sharpened and we really see our kids.
Of course, it’s not all sunshine. Sometimes the truth that comes to light is hard. We see bad habits left untended, ignored. Surly attitudes that fester underneath the surface. It’s hard to see these things, know these things. It’s easy to spiral down into feeling like a failure as a parent. And while I do think some heart-level searching and confessing needs to happen, I think we tend to get stuck there in a feeling of failure.
What’s been deep on my heart lately is that each morning is new. Every morning we get a fresh slate. For that matter, every moment is new. Every moment we can begin again, fresh, re-try, re-boot, re-build. These kids are incredibly resilient, incredibly flexible, and they are capable of so much more than we could possibly imagine. They will respond to new efforts to build relationship with them. We just have to start. One block on top of the other.
I have to admit to feeling pretty uninspired as of late in the kitchen. We’ve all sort of hit the wall as gluten-free eating goes. My husband moaned the other day… “I’m so sick of rice. So, so, sick of rice.” I could understand- not so much the rice, but just the same meals in variation. In our defense there has been much going on so we’ve been relying on what (little) we know- so it’s been variations on something + vegetables + rice ad nauseaum. The Lenten season hasn’t exactly helped. I have to find some new things to add to the repertoire quickly before I have a family rebellion on my hands!
I am also learning how to deal with the food needs when medical crisis hits. The last time Josiah went in the hospital in September, we had literally moved to gluten free eating a week prior when Ellianna’s biopsy came back. Josiah’s hadn’t returned yet, but his docs thought that regardless, taking some of the load off of Josiah’s GI would be advisable no matter what the results returned. It was overwhelming! It was frighteningly expensive too. On such short notice, we had to go to the grocery store and find as many frozen meal options as possible. They were hard to find, for one, and two, they were double and triple the cost of the ‘mainstream’ frozen meal. Snacks, too. And of course, as many will tell you, much of the frozen stuff just tasted…eh…like cardboard. There, I said it. Gluten free cooking, especially where pasta and breads are concerned, is always better fresh.
We left that experience a little scarred- and feeling not too adventuresome. That needs to change.
This time we had a lot more gluten free experience under our belt, and we mostly relied on crock pot based meals. We definitely have our go-to recipes, but even those need refreshing.
Even so…it feels good to get back into the rhythm of preparation again. I never thought I’d live to see the day when I’d actually enjoy being in the kitchen- not only do I enjoy it, I find it to be a calming and centering practice. That’s not to say there aren’t crazy nights that drive me nuts, because there are, but overall, it has become a place of delight.
“Anne ended a week that had been full of pleasant days by taking flowers to Matthew’s grave the next morning and in the afternoon she took the train from Carmody home. For a time she thought of all the old loved things behind her and then her thoughts ran ahead of her to the loved things before her. Her heart sang all the way because she was going home to a joyous house…a house where every one who crossed the threshold knew it was a home…a house that was filled all the time with laughter and silver mugs and snapshots and babies…precious things with curls and chubby knees…and rooms that would welcome her…where the chairs waited patiently and the dresses in her closet were expecting her…where little anniversaries were always being celebrated and little secrets were always being whispered.“
– Anne of Ingleside, p. 14, Ch. 3.
When I grow up, I want to mother like Anne.
I said not too long ago that the only constant my family really knew was change. I think I want to revise that statement a bit. Yes, the truth is that we have rocketed from one crisis to the next, and therefore from change to change. But to say that it is the only constant we know- the more I think about it, the more I disagree.
There is a quieter rhythm that we return to again and again in the midst of things. It’s the fact that we always have dinner when Daddy gets home. We always try to have our afternoon ‘tea’ (yesterday it was yogurt parfaits!) and read aloud from a good book. There is always space for play and time to go outside. There is always candlelight after dinner and reading (and stinky preteen boy feet). There’s always quiet classical music playing in the evening hours. At bedtime the prayers play quietly, the chant following us into sleep. There is always a pretty flower or two on the dining room table (even massacred crocuses that the littles pulled up before they could be stopped). It is these things that I fight to re-establish as soon as is humanly possible.
Yes, the weekend re-entry was difficult. My children were off their normal schedules with a different caregiver. Mommy was gone and brother was gone and Daddy was in and out, and that knocks kids for a whirl- don’t let anyone try to tell you differently. Things just get off, no matter what the crisis is.
It’s these quiet, almost un-noticeable rhythms that pull us back to center and help us re-balance. I notice that whenever I let these seemingly meaningless or pointless little things fall by the wayside, everyone begins to act a bit more spazzed, a bit more short tempered. I doubt that any family member would even be able to verbalize why it was so- that’s how quiet these little family rhythms are. But when they slip back in, the little heartbeats of home- everybody slows. Calm re-enters. Space is made for peace. There are more constants in our life than just change, really. Love and peace and a soft place to land. I’ll take it.