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.