“[In Exodus 33] Moses asked to be shown the way. The way is not shown; but better than this, God says, ‘Trust Me — I Myself will go with you!’ He will manifest towards you the same Shepherd love. The way may be very different from what we could have wished; what we would have chosen. But He has His own wise and righteous ends in every diverse turning in it. When His sheep have been conducted to the rougher parts of the wilderness He, their Shepherd, has gone before them. When their fleece was torn, and they were footsore and weary, He has borne them in His arms! Let us trust Him for an unknown future. He seems to say, ‘Pilgrim in a pilgrim land! My presence shall go with you in all your dark and cloudy days; in your hours of faintness and dejection; in sadness…”
~John MacDuff (1818-1895)

“And He said, ‘My presence shall go with you, and I will give you rest.’” Exodus 33:14

Life continues to be very hard and very unpredictable.

We continue to fight, and periodically we succumb to the weariness and discouragement. That’s kind of where we are this week. In the Valley of the Tired and in a place of feeling some discouragement and even some sense of defeat.

It’ll pass, but there’s really no getting around it. Whenever we reach this point, we have learned that we have to acknowledge it, look up, and place it in God’s hands, asking him to carry us through while we wait for him to breathe renewed strength into our tired hearts. We know he will. Even if we can’t feel that we know it, we know it.

Two years ago today, Kathryn spent eleven hours in the OR for her major bladder surgery. She had been very, very sick for almost a full year, and it was our hope that this surgery would finally bring her back to a place of health.

Although it took several hard months after the surgery, this did happen. The surgery was a huge success, even greater than we had hoped for, and our girl enjoyed wonderful health and peace. For about 20 months.

Then this March, while we were in ICU with Lilyan, right after her big surgery, Kathryn developed a pretty serious urinary tract infection. We weren’t alarmed initially because this will happen from time to time because of her bladder reconstruction and her cerebral palsy. This was on March 25. Then on April 25, she was diagnosed with another UTI. And again on May 28. This has continued happening just about every thirty days for five months now.

She has been on so many antibiotics over these past months that she is beginning to experience some intestinal challenges now, too, even though we keep her on a significant daily regimen of probiotics. And no one can figure out what’s causing these infections to plague her so continually.

She finished her fifth round of antibiotics yesterday, but she is still showing some lingering signs of infection. Our urologist has made the decision to bring Infectious Diseases into the picture now, which we are very glad about. We have developed a really good relationship with the doctors in this department throughout this year as they have worked closely by our sides to care for Lilyan’s spine incision that won’t heal, and to help us solve Roslyn’s new issues with antibiotic resistance.

We are praying that they will be able to find the reasons behind Kathryn’s infections, and especially to find a solution for breaking this cycle of infection that her urinary system seems to be stuck in. We are already communicating with them and hoping to see them with Kathryn next week. But this means more appointments and more searches for answers.

Lilyan’s twenty-second surgery was done this past Tuesday (Aug. 6). The report was the same as previous weeks. Healthy tissue is continuing to grow over the hardware in her back, although more slowly than everyone would like. But, week after week, we also hear that there is one area, described by the plastic surgeon as “a deep place under her hardware,” that just won’t fill in and heal. Everyone is baffled by this, and no one seems to know what to do about it.

Also, the piece of hardware that fractured through her sacral bones is continuing to shift and putting her at greater risk for soft tissue breakdown in her lower back, which is an area that is beautifully closed and healed. This is in spite of the fact that we continue to keep her positioned mostly on her stomach with the use of a large, soft wedge.

Her orthopedic spine surgeon ordered a CT scan of her back to get a better look at things. This was scheduled to be done right after her surgery on Tuesday.

Just before she went in for this scan, we learned that one of his reasons for ordering this scan was to determine whether or not her spine fusion had “taken” sufficiently to actually remove the hardware from her back. We don’t really understand what this means, and the thought of opening her back up again, after fighting so hard all these months to get it to heal, was just more than we could grapple with at that moment.

We knew that, very early on, the removal of the hardware was presented as a last resort option if she wouldn’t heal, and it was clear that this would’ve been a really bad thing. There seems to be some evidence now that, once her spine fusion (the bone part of her surgery, and not the soft tissue part that we’ve been fighting with all these months) was healed and well-established, the hardware could safely be removed, although it wouldn’t be anyone’s first choice.

It seems that (if we’ve understood the little bit that we’ve been told so far) some people’s bodies just won’t heal fully as long as there is a foreign material inside, but once that material is removed, full healing will happen pretty quickly. So, although we were still uncertain about the whole possibility, and really discouraged at the idea of opening everything back up, we did feel some hope that maybe this could lead to the allusive healing we’re all seeking.

But we still had about a million questions to ask before feeling good about such a drastic step.

We resolved that we would just have to wait until the results of the scan were back, and then we would ask our questions.

Well, we learned yesterday evening that it’s all moot now because the CT scan showed that her fusion is not sufficiently healed or well-established. The description was that “it is fusing, but it’s not there yet,” and we were told that all discussion of removing the hardware is now off the table.

The main thing we felt in the wake of this phone call was just so! tired!

The one piece of good news is that the spine surgeon has decided to go ahead and open a small area in her lower back and snip off the broken piece that is causing her so many problems right now. He will meet our plastic surgeon in the OR next Wednesday, for Surgery # 23, and take care of this. If that incision heals as we all hope it will, then this will, at least, eliminate the need to keep Lilyan on her stomach so much of the day. This would make her days so much easier for her and for all of her caretakers. That is definitely what we are praying for.

In the meantime, we hope to have the opportunity to talk with her spine surgeon after this procedure next week and get a better idea what he’s thinking and what options, if any, there are for addressing the lack of healing in this one area.

Roslyn continues to struggle with occasional baffling symptoms, but doesn’t seem to have an active infection at the moment.

And the family continues to trudge on through day after day of living in isolation, away from the rest of the world as much as possible.

There have been some questions about why this has to be the case, so I’ll explain a bit about that. Lilyan must have these weekly surgeries for debridement of her wound and wound VAC dressing changes. If we don’t do this every week, the bacteria we have fought so hard to kill can immediately begin to grow again. And then we could easily find ourselves going back to the beginning of this whole journey. Even just a cold could prevent them from being able to take her into the OR for these surgeries. We can’t risk that. She remains on heavy medications to fight the continual battle with bacteria in her wound (one of which is causing her hair to fall out, poor girl), and we must do all that we can to help keep her healthy as we try to get her to the end of this hard recovery.

In the midst of these long months, a number of kids have fallen behind with critical routine testing associated with each one’s specific medical needs that must be done every six months or annually. I can no longer postpone these appointments, so I’m being overwhelmed with carving out the hours it takes to schedule them.

This is while I’m also trying to prepare new curriculum for this coming school year. Many of our kids struggle with at least some academic challenges, due either to their special needs, or to their traumatic beginnings and the changes/damage that this trauma can inflict onto little brains. So I have made some significant switch-ups with my curriculum this year, with great hope that these new materials will better address their needs in these areas. But it’s requiring a tremendous amount of prep.

I love this prep and really enjoy those hours. When I can find them. As always, my older kids are helping so much in other areas to free me up for this task when I can be at home. But it’s a massive challenge in the midst of all of these medical needs, and as I schedule more and more appointments and watch my school days filling up before my eyes, I recognize a growing sense of alarm that my school year will already be derailed before I can even get started.

I am trying so hard to trust God’s plans in every single area of my life and in the lives of my children. As the quote above says,

“The way may be very different from what we could have wished; what we would have chosen. But He has His own wise and righteous ends in every diverse turning in it.”

I want to remember that God is by my side through whatever is coming at us for the rest of this year, and that it’s all beautifully and perfectly proportioned and filtered through his loving wisdom.

We have no idea what to expect every day when we wake up. There are so many unanswered questions. But He has promised, “My presence shall go with you, and I will give you rest.’” Exodus 33:14

Lord, help my unbelief in the midst of the tired and the uncertainty.

We were blessed to finally pull together celebrations for the July birthdays, even though it’s already August, and I now need to prepare three more birthday celebrations for those kids. I’ll close with a few pictures from that sweet evening.