Safe beyond the bounds…

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It’s been just about a week and a half since my surgery. Today is the first day I am really up and about. The surgery itself was successful in that everything was removed and the ENT got all the work done he felt was needed. We will probably have the pathology results either today or tomorrow. As my surgeries go, it was probably the worst. They didn’t start pain management while I was still under anesthesia (or I came out of anesthesia too quickly), which meant that waking up was very traumatic and painful. The first day or two post-surgery seemed to go well, but as Thursday of last week dawned, everything took a turn for the worse. Unbeknownst to us all, I was actually allergic to a med they were giving me, which was making the swelling worse, not better. By Friday morning the pain was unbearable, even on strong pain medications. I was struggling to breathe (due to the swelling), as well as being very woozy, groggy, and unable to stay awake. An un-scheduled return to the ENT made the problem clear, meds were switched, and the healing process finally began.

It was an incredibly tough week. It was an incredibly humbling week. This whole experience over the last year has been humbling, but especially this week. In the midst of all of this with Josiah, the kids, all their needs, our family rhythm knocked so sideways, I am trapped by this impending surgery. I can’t not have the surgery. I can’t put it off. The masses were already causing problems. I didn’t like the details going in at all- I knew my body was not in a good place, I knew I wasn’t really healthy enough to be undergoing surgery, that the stress of everything was laying toll, the exhaustion of back to back hospital visits with Josiah in which I never sleep properly. It was just horrible timing. And it happens anyways. The doctor explained to us that it was maybe one day of down time- one day that I’d have to rest and sleep quite a bit, one day with a lot of pain, and then it would be a steady upward healing process from there. I’d still have to rest a lot, but I should be able to function almost normally. We made plans accordingly, covered our bases in a way we thought would work. Clearly, that didn’t happen at all. I was helpless for most of the week. On the bad days, the wooziness was so bad that I couldn’t walk unassisted. I had to rest constantly with icepacks. I slept even when I didn’t want to.

It was brutal. For my husband. For my children. For the caregivers that helped us. For me.

It also gave me a lot of time to think and to pray.

Now it feels like there are so many words brewing, bubbling up, things I realize I have to say, get out there, let go of, give life to.

I realize that today or tomorrow I may receive the devastating news that the masses were cancerous. I also realize that I may receive the life-changing news that they weren’t. It’s completely out of my hands and has been the whole time. So it goes for all the other things going on with Josiah. We walked this road with Ellianna.

But the thing I know for sure now, here, this moment- I can’t keep staying in this place of waiting for the next piece of devastating news before going out and living life joyfully, artfully, lovingly. They don’t run counter to one another, if/then. It’s a both/and. I have to go and live and accept the news, the turn in the page, the bend in the road. We have kept our life on hold for so long (almost eight years!) waiting for the calamities to pass, surviving each new crisis. I don’t want to survive any more. I don’t want to live in fear. We have forgotten how to dream for our family, how to see outside of these medical crises. I have no idea why this was the suffering chosen for us, why so much, for so long, one mystery after another, endless waiting and testing and waiting again. But it was, and it is, and it will be. The bottom line is, love always wins. I have to live my life in that truth, to know Love, to know Christ, to lean into the goodness of the Lord and live. Glory to God for all things. 

Against a sea of arrows…

IMG_20150422_122156IMG_20150412_131632IMG_20150413_184347IMG_20150429_161222IMG_20150429_110544 IMG_20150503_134900There are times you write things. Cross them out. Begin again. Cross them out again. You turn, exhausted, to poets for the words that you can’t find. So it has been with me. I’ve been needing to write here for half a month now. Tell you more about Josiah. But I couldn’t. The day we got diagnosis answers for him was the day I found out that I had masses in my sinus cavities. Masses. Yes. Let that word lean heavy on you as it has done me. I was absolutely undone that day. Bereft. I couldn’t find words for days afterwards. I wandered like a ghost. A friend came and ferried me through one appointment after another, and I slept hard in between times. My body shut down.

I am still wandering, wordless apparition.

So where do I begin?

Josiah has no natural gastrointestinal function. They don’t think he has Hirschprungs, but the testing has conclusively proved that he has no natural function and only weak medicated function. He will have a cecostomy tube surgically implanted within the next month. It may be a life-long thing. It may not. It may not work; the possibility that the medicine will continue to have weak effect even with the added ‘help’ is very high. Who knows where it goes from there.

As I’ve mentioned before, James’ vacation and sick time is long gone, which is one of the big reasons why our medical fund has become so important. It was originally just intended to help pay off Ellianna’s medical debt, but the fund is now supporting three family members and helps assist our caregivers, since James can no longer take time off to assist during surgeries, doctor appointments, and hospital stays. The time off would be un-paid and that is the last thing we need right now.

His time was used up during Ellianna’s illness (she’s doing wonderfully, by the way) and a bit of the beginning stages with Josiah. How could we have possibly known it was only going to get more intense? Would we have parceled out the time differently? I don’t know. I can’t play what-ifs anymore. But the worst of it is, while Josiah was in the hospital two and a half weeks ago, James was injured while at work. He was transporting some equipment that shifted on him, catching his foot between the equipment and an air conditioning unit. It wrenched his knee quite badly. His MRI to assess the extent of that damage was this Sunday (May 3), so we should know by the end of the week if he will require surgery. Meanwhile, he has been in an isolation brace and on crutches, unable to drive and well, really do anything at all. The helplessness of it is driving him absolutely nuts during such an intense time for the entire family.

And boy, did it throw the logistics of our large family for an even worse loop. It’s not like we have teens who drive at home or who could watch our younger kids. It just…oh, don’t get me started on the headaches. There have been quite a few.

Which leads me to the punchline. (Grant me my morose humor.)

Headaches. And a face that went a bit numb and a lot painful. Honest to god, I chalked it up to horrendous spring allergies, which have always been the bane of my existence every April. I finally gave into the pain and headed to my general practitioner. A short ten minutes with him led to referrals and family history discussions, because he had found masses in my left sinus cavity. (The side that had gone numb.) I told myself it was nothing. That the trip to the Ear, Nose, and Throat guy would show it was nothing and everyone was freaking out about nothing.

It wasn’t nothing.

On his first examination with the rigid scope, the ENT doctor was deeply concerned that the left mass went under my ear and into my vocal cords. It was a given that I would have surgery from the first appointment but much testing was required before he went in. The CT scan and other testing has shown that I do, in fact, have three separate masses in my nasal cavities. Two on the left, one on the right. The one on the right was proven to be a benign bone spur or bone tumor called an osteochondroma -a genetic condition that is not life-threatening in any way. Just annoying. I’ve had eight of them removed in my lifetime so far, and this will be the ninth. The other two appeared to be what the doc originally thought was one soft mass, and, gratefully, are actually far smaller on further CT examination than he originally thought. The fact still remains that they are soft tissue masses affecting my breathing, so it all will be surgically removed and the masses biopsied. My blood work right now is inconclusive.There is a history of melanoma in my family. It’s all in God’s hands. My surgery will be next Monday, May 11th. The biopsies will return within that next week.

Friends, there just aren’t words. My mind refuses to wrap around it. Fear’s tentacle grip slips under my skin, my mouth empty of explanation. I have just…I am…beyond the edge of myself. It has been so intense this last year, first with Ellianna, then Josiah. You tell yourself over and over just to take the next step, do the next thing, hold on, pray hard, walk forward in the place that you are in because eventually there will be an end. A new normal. Some sort of point on the map where this leg of the journey ends and another begins. The light at the end of the tunnel. Right now, it just feels like that light is another oncoming train. The grief of it all is pushing me under the surface. I am so exhausted.

These are the times when you sit next to Hamlet as he remembers Yorick to Horatio and you just wonder. And you pray. And you rail. And you pray some more. And you wander out on the moors of your being. You shout in anger at the sky for the un-nameable place of being that you are put, fear and sorrow and hope and faith and rage your only companions.

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.

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