Rough winds do shake…

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It has been an intense few weeks, to say the least. You can think you’re prepared for something only to find you aren’t in the slightest. I didn’t mean to slip out for so long, but there just hasn’t been time. And I’ve found myself wordless. I don’t know why, but the stuff with Josiah has absolutely left me in shock. You’d think it would be any number of things that happened before that would do me in, but no. It’s this.

Most of the other stuff that has happened in our family’s life came clear out of left field. Someone suddenly falls sick. Some injury. Some loss we could in no way prepare for. Josiah on the other hand, he’s been like this since he was born. I kept telling the doctors something was wrong and I kept getting told he’d just grow out of it, here, have some medicine for him, you’re over-reacting, mama…and the worst part about it was that I believed them. So we settled into a ‘normal’ with him that wasn’t normal at all.

And now things with him are just mushrooming and it makes me so angry. If someone had just listened to me when he was but a baby, the solutions and fixes would have been so much easier, but now he’s been dealing with a barely-functioning GI system for four years! And there are intrenched problems.

And the hospital visits are mushrooming too. He will be admitted for a second time in less than a month on Sunday next. Originally it was supposed to be for two days (starting next Tuesday) and it has now stretched to four- which we were informed of, rather abruptly, yesterday evening. A mad scramble to find more caregivers to cover the difference commenced, and it was all I could do not to hyperventilate. He will be prepped for a colonoscopy from Sunday to Tuesday, and on Wednesday, he will be put under while they do the colonoscopy and biopsy some tissues, and then they will begin the next test they need to evaluate function. The four day timeline is iffy, because if they discover anything during surgery they will switch from colonoscopy to GI surgery- similarly, if everything is okay on the colonoscopy but he ‘fails’ the function test, they will probably still do surgery to place a c-tube, which means, that a four day hospitalization could well stretch into a week or more. You can imagine the incredible logistics that will have to be performed if this becomes the case. Both James and my mother have had to use so much sick/vacation time from Ellianna last year and Josiah’s previous hospitalizations that we are really flat against a wall if his hospitalization ends up being extended.

Nevermind the fact that we just want Josiah to get the help he needs! From what I understand we’re shadow-boxing with insurance on a lot of this- that multiple tests have to be performed even though he has flunked every one previously. They have to prove he flunks them all, I guess? I don’t know. My mind spins.

It’s these times that I find the need for beauty absolute. It’s noting the way the sun shines in the window in the early morning, the way the flowers lean in the vase, the swirl of cream in the coffee. The peaceful way she sleeps. It’s the finding the beauty each day that helps me to center. It hasn’t all been difficult and intense, although everyone got sick with some bug- spring break has been rather lovely for us this week. We went on a few adventures around our city since Daddy couldn’t take any vacation time and we have only one car and made a ‘stay-cation’ of it. Palm Sunday last Sunday was just beautiful, beautiful. We had a great time- so much laughter. Now it seems we will have to miss Pascha with the abrupt change in the schedule.

I’m grateful we had a beautiful week to fill up our tanks before everything goes sideways again. Good to find peaceful havens in the midst of incredible wind.

Quite a few of you have emailed me for a while asking if there was anything you could do to help. I’m sorry I haven’t been able to return emails, for one. I do have an answer now, as my friend Diana helped us set up a page for our medical needs. First and foremost, we beg your prayers. Prayer is always helpful. But if you feel so led, we would be humbly blessed if you contributed. Right now the funds will be used to pay for food next week, as we need to purchase easy frozen gluten-free meals for the caregivers to prepare, as well as gas money for the trips back and forth. Any money above and beyond that will begin paying down the bills for both Ellianna and Josiah’s hospitalizations. I am so grateful for you, dear readers, and your support and prayer over these last few years is an incalculable blessing. I promise we’ll be back to ‘regular scheduled programming’ soon, but in the meantime, thank you for allowing me to share our medical struggles here.

Spring forward, fall back…

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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.

A time to build…

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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.

This Week in My Kitchen

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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.

To a Joyous house…

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“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.


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