Some hard, hard stuff coming at us, and Scott and I aren’t feeling at all ready for this. We’ve known for over four years that it was coming, but now that it’s here, we are not feeling strong enough or brave enough to face it.

When our first daughter was eighteen months old, we discovered we had another little one growing in my tummy. We knew we wanted more kids, but this was a surprise and sooner than we were planning, and I remember, as silly as it sounds now, worrying about how I would stretch the deep, passionate love I felt for this first daughter enough to fully embrace a second child. As she grew inside of me, these doubts faded, of course, and we loved her just as deeply and just as passionately.

This was true again for numbers three and four, and it was also just as true for numbers eight, fifteen, and twenty-three who came to us along a different path—adoption.

I am still surprised by the number of people who don’t really fully grasp that all twenty-three are ours just as much as the first four children are. We hear comments like, “It’s so nice of you to buy bikes for all of those kids,” or “You’re so wonderful to take those kids in and give them a home.” No one would commend us for giving our biological children a home, or bikes. That’s what parents do for their children, no matter how many they happen to have. I really do understand why this is hard for some people to comprehend, and it doesn’t make me mad, or even hurt my feelings.

But I do want the world to know that they are all fully and completely our children, just as if they had come through my own womb.

God gave each of them the name “Rosenow” before Scott and I were even born, and our hearts beat in sync with each one of theirs just as much as with our biological children’s hearts.

Lilyan falls at number twenty-one if we’re listing the children by the order in which they came home forever, and she also just happens to be number twenty-one if they are listed by chronological age.

But she isn’t just a number. She is our cherished and so-dearly-loved daughter, and she is her own person.

Strong. Independent. Smart. Sassy. Beautiful. Funny. And living life fully and courageously in spite of her very serious congenital disabilities.

Lilyan was born with several severe deformities in her body that include scoliosis, lordosis, kyphosis, caudal regression syndrome/sacral agenesis, and spina bifida. I won’t go into what all of these words mean, but combined, they have left her with total incontinence, legs that are fixed in a bent “Buddha” position, a greatly exaggerated rib cage, complete paralysis from the waist down, and crowded organs that are squished into her too-small and terribly misshapen trunk.

Many doctors checked her out after we brought her home in June of 2014, and they all made it clear that she was facing at least one very major surgery at some point in order to, hopefully, prevent an early death. She was doing well at the time, and because of the risks associated with the surgery itself, they stressed that it was best to wait as long as possible before doing the surgery. I shared much about this in my last blog post in March 2018. I won’t repeat all of those details here, but you can see pictures showing Lilyan’s trunk deformities more clearly, as well as read details about this surgery by clicking here to go to that post. Just scroll about half-way through it to get to the part about Lilyan.

The surgery is now only three and a half weeks away. It’s time. Over the past couple of weeks, Scott and I have been to several in-depth consultations with each of the surgeons who will be part of the team operating on our baby all day on October 29. They have each focused on making sure we understand how huge this is, and all of the risks involved. They have told us that the risk of death, during surgery and immediately post-op, is real. Relatively small, but real.

When we asked what the cause of death could be in such a case, they explained that it would be either blood loss (they already know there will be transfusion for sure, just not sure how much yet), respiratory failure, or sudden and uncontrolled hypertension that can be caused when the neurosurgeon clips her spinal cord (one of the necessary pieces).

Our orthopedic surgeon, the lead for the team, in trying to express the “hugeness” of it all and the impact it will have on her said, “The trauma to her body and systems will be the equivalent of her being hit by a bus, and then rolled back over again.”

This is our baby. How does a parent hand over a child, knowing that this is what is coming? And how do we face the possibility of losing her?

We know that, without this surgery, early death is a certainty for our baby girl. And we know that waiting too long to do it carries huge risks, as well. If we wait till she has serious skin breakdown (which will happen), the risk of bone infection will be very high (associated with the skin breakdown); if she develops a bone infection, it can take years to heal—if they can even get it to heal at all—and they can’t do the surgery while there is any hint of bone infection. And if they wait till she begins to lose pulmonary function (which will also happen in time), then her system will almost certainly be too compromised for her to withstand the surgery. It would then just be a downward spiral for her while we watched her die. So, the beginning of the skin breakdown that we and her doctor saw developing in March made it clear that we can’t wait any longer.

We have no choice but to move forward with this. Lilyan deserves this chance at life.

But we are afraid. We are praying that God will keep our scared hearts looking to Him and His perfect plans and that, in these days leading up to the surgery, He will enable us to interact with Lilyan and the other children in ways that communicate tranquility and trust in this Father who brought all of our babies to us and loves us beyond comprehension—an Author who writes wonderful stories, even if they have dark parts in them.

In spite of the seriousness of this surgery, if all goes well, her hospital stay will be shorter than some of the stays with other of our children. They are predicting about a week. We will need to stay as focused as possible on Lilyan and her recovery during that time, so we are praying for a week’s worth of meals for our kids all here back at home. A dear friend is coordinating this for us, and I will write again once I have a link for that, in case anyone wants to sign up to help in this way.

This has already gotten too long, so I’ll try to wrap it up quickly. I haven’t updated in many months, so I’ll give a very short synopsis of the past few months.

• Our summer was calmer than we had feared, but not as calm as we had hoped. With all of the cancer and surgeries and medical challenges we juggled over the past three years, many routine things had fallen way behind. And it takes lots of time to catch up on dental cleanings, eye exams, and routine physicals for so many people. We spent much of our time this summer checking those things off our list.

• After learning more details about the major bladder surgery Jaden was supposed to have had at the end of August, we determined that the chances were too great that this surgery would cause decreased quality of life for Jaden, rather than an increased quality of life as it was supposed to do. So we chose not to go through with that surgery. Sadly, this means that there is now, at this time, no hope for him to get out of diapers. For an almost-nine-year-old boy who functions at a “normal” cognitive level, this was a huge emotional blow. Jaden is still working through all of this, and we would cherish your prayers as we try to help him. God knows His plans and what kinds of things are down the road for all of our babies. As our second-oldest son reminded us, the incredible “bionic” prosthetic hand he has now, was only science fiction when he was Jaden’s age. We will trust God, and wait for better options.

• I’ve been fighting with Achilles tendonitis for about nine months now and finally had to figure out how to fit regular PT sessions into my life (in spite of eighty-two appointments over the past five weeks). I would love for this to heal so I can be back to full function before the holiday season.

• Lastly, many months ago, Scott and I were given a gift  to slip away again for a few days to our favorite little cabin in Hocking Hills. Back when that gift arrived, we booked that cabin for next week, praying nothing would prevent us from going. We are supposed to leave on October 15, and we are praying so much that things will go smoothly for the kids back here at home and that our minds and hearts will be able to shut out all that is ahead with Lilyan long enough for us to just rest and connect with each other for those few days. We are feeling very much in need of this time before we go into surgery and the months-long post-op recovery ahead of us. If you should feel led to pray for that along with us, we would be so grateful.

We’ll try to do a better job of keeping you updated in the coming weeks. Thank you so much for all of the love and the prayers.

It is very late Thursday night. I can’t sleep. One week ago today, we took Lilyan and Jaden to see their spine surgeon for what was to be a pre-op appointment for Jaden and a routine check up for Lilyan. We left that appointment with hearts that were struggling with sadness and dread and some fear, and heads that were spinning as we tried to process the news we were given. While we weren’t completely surprised, since we had been seeing what we thought might be some changes in Lilyan’s spine — changes that we thought might mean it was time to start discussing her big spine surgery — we were somehow still not prepared for all that hit us during that appointment. It has actually taken me a full week to try to digest all that we were reminded of, and to wrestle my emotions into a place of being ready to write this post.

Jaden and Lilyan in their winter wheelchair capes as they waited to see our spine surgeon last week

I’ll first do a little bullet point catch-up on other aspects of life and then share more details about this visit.

• Our financial situation: God has continued carrying us through this time, providing for our regular monthly needs, as well as surprising us by providing for some other pressing needs. These included a number of new IKEA dressers for kids whose dressers were literally falling apart (some of their drawers no longer even had fronts on them), and the amazing news that friends would be providing some essential medical supplies that our three youngest needed. We spent so much energy and time fighting with our insurance company over the past year, only to lose our final appeal not long ago when they told us emphatically that they would not be providing these supplies for the kids. What a huge blessing this news from our friends was!God also just recently provided money needed to purchase spring clothes for our kids, and if their needs in this area aren’t great, we hope to also stretch it to cover school curriculum needed for next year. I can’t even find words to describe what a blessing it is that He has sent this gift to us even before time to buy these things. Just amazing. We will keep trusting Him for all of our future needs and continue sharing those blessings with you.

Our young-adult and teen kids pitched in to assemble the new dressers.

These supplies represent an indescribable gift for our three youngest who desperately need them.

• Jaden’s surgeries: Jaden’s major bladder surgery that was scheduled for last month has been postponed now until August because of the mild case of flu that hit the family. However, his relatively simple surgery to lengthen the titanium rods in his back is still scheduled for April 9. He celebrated his 8th birthday last month (our third little one to turn eight within the last six months), and has adjusted to the idea now that he has to wait a little longer for his bladder surgery.

Fighting flu and watching the Olympics

Jaden turns 8!

• March birthdays: We also celebrated all three Rosenow March birthdays recently. Erin turned 35; Meghan, 22, and Ian, 16. How do the years fly by so fast?!

• New grandson: Our 11th grandchild, Wesley Xavier Rosenow, was born in Portland,  OR, this month. We are so excited and can’t wait to meet him.

• Changes in our family: You may or may not be following The Shepherd’s Crook Orphan Ministry’s current “Orphan Prevention” project. We have worked hard for the past two and a half years, and have been blessed with beautiful help from supporters, to get approval for Permanent Resident Visas for Bolivian single birth mom, Raiza Sangueza, and her young daughter, Jhannel, so that they could stay together and come to the U.S. to begin new lives here. They will live with our family initially until they are ready to be on their own. We will post an update on TSC’s site very soon, but the process has been completed and they will arrive in our home on May 15! Thanks to help from many people, their bedroom is ready and waiting for them.

Raiza and her daughter, Jhannel

Their bedroom and bathroom in our home – ready and waiting for them

Now, on to the latest with Lilyan:

We knew that, eventually, Lilyan would have to have a really major surgery to her spine. We also knew that this surgery was such a huge deal that our surgeon didn’t want to do it until we had no choice. We have reached that point now. The two things he’s been watching for to determine when we couldn’t wait any longer are skin breakdown over her spine or worsening pulmonary issues. While her pulmonary status is still stable, she has started showing signs of skin breakdown, which puts her at very high risks for life-threatening infection now. After only one quick glimpse at her during her appointment last week, he said, “That’s it. It’s time. We can’t wait any longer.” He then had his nurse practitioner take Lilyan and Jaden out of the room while he discussed the details with us, explaining that the surgery is such a major thing that he won’t discuss it in front of the children needing it. Our hearts began to beat a little faster at this point, and we tried to prepare ourselves for whatever we were about to hear.

The first thing he told us about the “huge, huge risks” (besides the fact that many hospitals no longer even do this surgery because it’s so big, and that it’s “multiples of times greater” than anything we’ve ever faced and the biggest surgery he ever does), is that it’s the only surgery he does in which he has to list death as one of the actual possible risks. Relatively low — about 1 in 1000 — but still a very real risk. Without the surgery, however, death is certain for our baby. We already knew that she would make it into young adulthood, at best, and her quality of life, without the surgery, would go downhill from this point due to worsening pulmonary function and constant wound infections from the skin breakdown over her spine. You can see from this picture that, because of the severe deformity of her spine (essentially S shaped in profile), Lilyan’s chest actually rests on her lap or the floor when she is sitting. As I said above, her pulmonary function is stable for now, but with continued growth, this would begin to change, and those changes would bring tremendous challenges for her.

This next picture shows the shape of her spine. Just under the skin in the severe curve of her lower spine is bone which is pressing against the skin enough to cause it to begin breaking down. It’s also causing pain for her now, which is a fairly new development.

The surgery will require three surgeons: Our neurosurgeon, our plastic surgeon, and our orthopedic spine surgeon — all of whom we trust.

Our neurosurgeon will have to clip the end of the spinal cord, which is a big deal because of the risk of further nerve damage (Lilyan is already paralyzed from about the waist down).

Then our orthopedic spine surgeon will remove all of the bones in the gibbous (the “hump” on her lower back), somehow straighten out the upper part of her spine (which actually curves severely in the opposite direction of her lower back), then connect the “loose” end of her spine to her not-fully-developed sacrum. Finally, he will fuse all of the vertebrae in her spine and insert rods the full length of her back on either side of her spine.

All of this work will leave a huge open wound, and our plastic surgeon will then have to somehow close this wound, which is apparently another really, really big deal. The Wound Care nurses (whom we also already have a great relationship with) will be a regular part of our lives for quite awhile afterward because healing will also be a big challenge and long process — much harder, for some reason, than with other surgeries.

Other serious concerns involve broken rods, failure of the fusion — which is apparently another really huge deal, but we don’t fully understand why — and very high risk of wound infection.

She will be in a body brace for about three months, and we are being told that it will be about two years before we can breathe easy and feel like we are past the point of danger.

We weren’t able to think clearly enough to go through all of our questions during last week’s appointment. We have come up with quite a few more since then, and our surgeon was already planning to meet with us again to go through those after we had some time to discuss everything with each other.

We believe that we have no choice but to move forward with attempting this scary surgery. Sweet Lilyan is not aware of any of these risks yet. She only heard him say that she will be taller and straighter when it’s over, and she is thrilled about that. In time, we will figure out how much she needs to know ahead of time to be prepared for the post-op pain and the long healing process. There is so much coordinating to do between all of these departments and so much pre-op testing to be done, that the soonest they could get her in is October. We should have a definite date by the first of next week.

In addition to our great concern for our baby’s safety and all that she will have to go through, we are grappling with the impact two major surgeries (Jaden’s bladder surgery in August, and then Lilyan’s spine in October) and Lilyan’s long recovery will have on the family after the already-hard last three years. We feel like we have been either in the middle of cancer treatment, in quarantine to prepare for surgery, in the middle of surgery, or working our way through tough post-op recoveries for as long as we can remember now. And this news means that there is no end in sight.

Our prayer right now is that God will give us a few weeks this summer to swim, play, rest, return to church, and just act like a “normal” family before we dive in again. Two summers ago, we were fighting our way through Scott’s very painful post-cancer-treatment period, and last summer is a blur of ER visits, Foley catheters, UTI’s, and so much pain as Roslyn and Kathryn struggled through the months leading up to their big surgeries. Life just hasn’t really even slowed for us during these past three years, and we would so love just a few weeks to catch our breath. Would you please pray, along with us, for this time of rest?

But, as always, our greatest desire is that we would be willing to walk peacefully down whatever path God has laid out for us; that we would trust His version of good, and lean into His strong embrace for real rest that can only come from Him.

The following quote has brought much peace to our hearts as we look down this daunting road:

“Imagine yourself threading your way along a most difficult and perilous path, every step of which is attended with pain and jeopardy, and is taken with hesitancy and doubt. Unknown to you and unseen, there is one hovering each moment around you, checking each false step, and guiding each doubtful one; soothing each sorrow, and supplying each need. This is no picture of fancy. Are you a child of God? Jesus is near to you at each moment, unseen and often unknown. He it was who, hovering round you, unknown and unobserved, kept you as the apple of His eye, and sheltered you in the hollow of His hand. It was He who armed you with courage for the fight, who poured strength into your spirit, and grace into your heart, when the full weight of calamity pressed upon them. Thus has He always been to His saints. The incident of the disciples in the storm presents a striking instance of this. Behold Him standing upon the shore, eyeing, with riveted gaze, the little boat as it struggled amid the sea. They were often invisible to human eye, but not a moment were they lost to His. Stepping from the shore, He approached them. Oh how majestic did His form now appear — walking like a man; and upon the water, like a God! They did not realize that it was Jesus, and were afraid. But their knowledge of Him was not necessary to their safety. It was enough that He knew them. And just as the storm was at its height, and their fears rose with their peril, He drew near and said, in His own gentle, soothing tone, unto them, ‘It is I; do not be afraid’ (Matthew 14:27).”
~ Octavius Winslow (1808-1878)

Thank you for reading this long post and for all of the ways so many of you love and support and pray for our family. It means so much.

Our Lilyan girl, who at the age of 8 1/2 is only about the size of a 4-year-old, is mostly just excited about the thought of being taller for now. She doesn’t understand all that is ahead for her.

What happened to those Rosenows? I know it seems like we have kind of slipped off into some place of silence. In addition to working our way through seventeen cases of Type A flu in our family (which all, thankfully, stayed pretty mild), we have been dealing with some grim, frightening, and significant life changes.

Some of you may know that for the past six weeks or so, our family has been facing some really scary uncertainty about our future, but only a few of you know the details. We have some clearer answers now, so I will share a little fuller picture here.

On this day last year, I posted the following photo and caption on my Facebook page:

Go to the zoo to escape the stress for awhile, and the big van breaks down (again) on the way home. Waiting for neighbors and family to come rescue all these kids and wheelchairs and for a tow truck to rescue the van. And kids are overdue to be cath’d. #iwillnotcry

We had no idea what a chain of events started at that moment.

In the months that followed, that chain of events slowly led us through some really tough spiritual battles as we wrestled with our humanness and God grew our faith.

Eventually, this growing chain led to the unbelievable gifts of Lucy and Ethel, our new vans. We are still in awe over these gifts and all that they represent to our sometimes fearful hearts.

What very few people know, though, is that this chain then also, unbelievably, led to the loss of half of our income. Half! Of an income that already didn’t stretch far enough to meet all of our expenses every month.

I recognize that I have left a lot of gaps in this story, and I’ve probably left you with a lot of questions. It’s a long and winding story that is too long and involved for this post, but if you want to know more, please contact me personally, and I’ll share more. For now, though, I’ll just say that this happened through no fault or wrongdoing on our part, and that we are sitting in a very, very scary place at the moment as we wait for God to show us where He will take this story now.

We have been able to accept this new reality, and we have even felt, many times over the past few weeks, that “peace that passeth understanding,” (Philippians 4:7) in brand new ways as God has filled us with assurance that He is the Author of what’s going on right now. But full disclosure here — we fluctuate between those feelings of peace, and moments of terrifying panic about the future and how we will provide for our family now.

At a time when our contemporaries are mostly beginning to reap the rewards of all those hard years of prep for their retirement, we are in a place of more uncertainty than we’ve faced since Scott left his engineering career to come home as full-time director of The Shepherd’s Crook Orphan Ministry. And we still have nineteen children living at home who need to be provided for.

God has so graciously made a way for us to get by for about three or four more months. At the end of that time, we don’t know what comes next. If you’d like to join us in this new chapter of our lives, would you please pray for us? Pray that we will follow this path with joy and excitement about what God is doing (we’ve written a whole book about this kind of walk — we should be better at this by now!). Pray that we will lead our children who are looking to us for assurance that the things we’ve taught them about this God we serve are true. They are afraid and need strong leaders to help them understand what a walk of faith looks like.

During my quiet time this morning, I was so blessed to stumble, again, across this quote from Theodore Cuyler, written in the nineteenth century:

“All around us are multitudes of weary people. The most common cause of weariness is the attempt to carry an overload of care. The word in season for such overloaded Christians, who toil along life’s highway like jaded pack-horses, is this: ‘Cast all your anxiety on Him, because He cares for you!’ (1 Peter 5:7). The infinite God from His everlasting throne has poor little sinful me on His Divine heart! My big load is not even a feather to Him! He knows my frame; He remembers that I am but dust. God’s offer is to lighten our loads by putting His grace into our hearts, and underneath the load. He then becomes our strength. His all-sufficient grace is made perfect in our weakness so that God really carries the load. This Divine doctrine of trust is a wonderfully restful one to weary disciples. It takes the weariness out of the heart. It is the fever of worry which consumes strength, and furrows the cheek, and brings on decrepitude!” ~Theodore Cuyler 

These moments of panic that I mentioned above? They always come when we shift the load and try to start carrying it ourselves. This quote was just what my unsteady heart needed this morning. This huge, scary time in our lives is not even a feather to a Father who has promised to care for us — who has proven His faithfulness to us over and over and over again. And even more than that, it is part of something big and beautiful. We don’t know what or how. But He has promised. He’s up to something again. (Aslan’s on the move!) 

Oh, Father, help us, as we walk this new path, not to miss even one lesson, one second of joy, one opportunity to know You more. You write good and perfect and beautiful stories. Help us to remember that. 

I’ll close with an updated picture of the nineteen still at home. God blessed us abundantly during the Christmas season at a time when we didn’t even know how we were going to dress our children (their clothing needs truly had become desperate) or provide a Christmas for them. In this picture, they are all wearing brand new outfits that were provided by members of our church. He has not forgotten us. He will not forget us in the days to come.

Wow! The past few weeks! There’s no way I can give you all of the details (even if I could remember them all), or this would be way too long, so I’ll try to summarize.

Once Roslyn and Kathryn finally got through their surgeries, we settled in at home to move through their recovery periods.

We were able to focus on some routine appointments for the kids (although lots more still hanging out there, and some of us are getting desperate for dental cleanings!), do our seasonal clothes switch-out, get some schooling done with all of them, catch up on some birthday celebrations and haircuts, continue construction on the house (which is mostly stalled for now), do Halloween, and spend time with our grandchildren — especially our grandson Keller who will be moving to Portland in a few weeks with his mommy and daddy, Allan and Nicole. We are trying hard to cram in as much time with their little family as we can before they are gone.

Also, Jaden had another surgery to lengthen the titanium rods in his back, and that went much better than expected.

In spite of these happy moments, we have continued to have some bumpy things along the way, and not nearly as much sleep as we need. Challenges have included the following:

• Financial struggles (personal, for The Shepherd’ Crook, and for The Rosenow Home Project) continue to test our faith, although God has sent some very beautiful answers to prayer for TSC’s financial crisis, and we praise Him for those answers!
• Kathryn is still very up and down medically.
• The construction, while an indescribable blessing, also brings many challenges with  it, especially when it has to halt for long periods.
• Overall stress remains very, very high just due to so many appointments and unexpected medical problems.

But we have been so thankful for the glimpses of normal mentioned a couple of paragraphs above, and for a couple of refreshing date days for the two of us. We even took a quick trip to the zoo with the whole family — our first family outing in over five months.

Among the sad events of the past few weeks was the passing of Scott’s younger brother, Brian. Brian was diagnosed with Stage 4 Glioblastoma Multiforme in March of 2016, as Scott was preparing to start his cancer treatments in Knoxville. He and his wife, Karen, were such beautiful examples of perseverance and trusting God’s sovereign plans as they lived life to the fullest all through the following months until Brian went home. We know we will all be together again someday, but we are sad about this temporary separation, and so very sad for the major life-changes his immediate family is facing now.

You may remember that my dad died a few months ago, and my mom, while doing so well with this unexpected change in her life, has still struggled quite a bit in some ways. We had been trying hard to find a calm period to have her here for a couple of weeks to visit and so we could try to help her figure out some things about where she goes from here.

Well, we chose what we thought was a pretty calm chunk of days and booked her flights. During her first few days here, life was actually unusually calm, and we were able to spend some good, quality time together. Sadly that changed.

We knew that we would have one crazy day during her time here. Roslyn and Kathryn were both scheduled for surgeries today, November 14 — Roslyn to finally have her abdominal drains removed, and Kathryn to have Botox injected into her bladder to help fight the spasticity there caused by her cerebral palsy. But we knew it would be just one day, and that we would be home again this evening. Wrong.

Over this past weekend, Roslyn suddenly began to run a high fever. She ended up in the ER yesterday, November 13, and after seven hours there, she was diagnosed with a pretty serious UTI and possible kidney infection, and admitted for IV antibiotics. She was devastated by this news because all she wanted was to go home and to have her surgery as planned. She knew that we had a big birthday celebration scheduled for Nolan and Carlin tomorrow night, and she wanted to spend more time with her grandmother.

Scott stayed last night with her while I went back home to the other kids so I could get Kathryn back down to the hospital early this morning for her surgery. When I got up at 4am this morning, we still didn’t know if they would be able to do Roslyn’s surgery or not, but as I was driving to the hospital, Scott called to say that they had decided it was too risky. They decided that they wanted to keep her on IV antibiotics for a few days first, and then do surgery at the end of the week.

This was a huge disappointment.  My mother is about to head home, and this trip has not gone at all like I had hoped it would. While we have managed to come close to teaching her to use her new cell phone and laptop, we still have so much more we needed to help her with, and I’ve had very little time with her just sitting and talking. Even when we’re together, I’m so tired that I can’t hold thoughts in my head. We had to cancel the family birthday party, and quiet family meals we had hoped to have together.

The lesson for these past two years seems to be, over and over again, learning to say with more grace and conviction, “not my will, but Yours.” I have failed at this so many times. I continue to pray that God will help me grow in this area and learn to celebrate even the areas of disappointment in my life, knowing fully that He is always doing something good.

As of this evening, we have a more definite plan for Roslyn. Her surgeon has tacked her on to the end of his long day of surgeries tomorrow and will do her surgery tomorrow night. It is likely to be late. He believes that we could have Roslyn home by early-to-mid afternoon on Thursday.

Now, I have finally managed to get Kathryn to sleep after getting her pain meds to work, and I will close with this quote and a lot of photos. If you’re interested, take a look. I pray that I will learn the truth of these words and that I will someday want no pattern in my life but His. Goodnight.

“Each apparently capricious turn in life’s way, all its accidents and incidents, are the appointments of Infinite Wisdom! You may work the loom — the shuttle may be in your hands — but the pattern is all His.” ~John MacDuff 1886

Seasonal clothes switch-out to Carpenters tunes in the background

Volunteers ripping out old, stinky carpet

Another volunteer addressing rotting wood in an upstairs bathroom

A group of teen girls painting a room for us

Working on some school

Our wonder dog, Godfrey, helping Kathryn with her PT

An orthodontic evaluation for Kathryn

One of many delayed birthday celebrations – Nathan’s 20th

Jaden’s rod-lengthening surgery

All 9 grands (and our kids) for a movie night

A few days together with our youngest grandson

A morning outing with our two youngest grands

Cheap and relaxing date day

And another date day – Main Street freight trains, and bourbon infused Twinkies

Badly-needed family outing to the zoo

Happy Halloween

Jaden and Nolan

Roslyn and Lilyan

Sweet Kathryn

Owen

Saxon the friendly lion, and Godfrey, as Godfrey Graybeard

The morning after

Some of the kids and some of the grands

My mother helping our kids with meal prep (lots of peppers to slice)

Mother playing games with the kids while we were at the hospital

My mom with most of her great-grandchildren

Roslyn when they told her she had to be admitted to the hospital

Kathryn after her surgery this morning

Once Kathryn was awake, we spent some time in Roslyn’s hospital room, but Kathryn was having quite a bit of pain and took over Roslyn’s bed for awhile. Roslyn was so worried about her. So sweet…

So sorry we left everyone hanging after we headed to the hospital last week. I’ll try to post a bullet-point summary below to update to the present.

• Tuesday, 9/19: This was all about having her PICC line placed, having an NG tube inserted, and then beginning a major bowel clean-out to prepare the bowel tissue to be used for her surgery. Everything went very well except for some pretty significant vomiting when her NG was inserted. But this was very short-lived, and the day was mostly just boring.

Step by step shots of her NG insertion

• Wednesday, 9/20: This was mostly just a repeat of Tuesday, except that Roslyn had visitors. Ian had a follow-up with our ortho doc for his broken collar bone, and Ethan had a follow-up with our neurologist to discuss his seizure meds. Our oldest daughter, Kristie, brought them to the hospital where they took turns playing games with Roslyn while we took each to their respective appointments. Unfortunately, I forgot to get any pictures. Ian’s healing slowly, but nicely. Ethan’s seizures are better, but he needed another increase in his meds. I did get one picture of Roslyn sleeping peacefully that night in spite of the tough day she knew she had ahead of her the next morning.

Little angel

• Thursday, 9/21/17: Roslyn was awakened at about 3:30 to begin preparation for her surgery. The transport team came for her at about 6:30, and surgery was going by about 8am. Here’s a little more detail for those of you who want to know more about what this surgery involved. Feel free to skip this part if you aren’t into details:
  • Roslyn had bladder reconstruction exactly a year ago and also got her Mitrofanoff (the stoma — or opening — built into her abdomen that leads to her bladder for easy emptying of her bladder every three hours for the rest of her life, which is what Kathryn had done seven weeks ago). Unfortunately, her bladder began to lose its capacity pretty much immediately after the surgery, causing her to constantly have wet diapers and continual urinary tract infections in spite of regular catheterizations. Because of this, we had to do another surgery called a bladder augmentation. This is a bigger and more involved surgery than the one she had last year and, in pretty simple terms, it involves opening up the bladder and then forming a “patch” from intestinal tissue to make the bladder bigger (the same way you might cut a purse open and then use a patch of other material to fill in that opening, making the purse bigger, thereby giving it greater capacity). This usually takes care of the capacity problem but brings new complications, too. I won’t even take time to go into those for now.

Roslyn came through her surgery very well, but it did take 11-12 hours. Her doctor was able to tell, as soon as he opened her up, that the reason her bladder lost its capacity last year was severe scarring from her last surgery. Her bladder was completely encased in heavy scar tissue, preventing it from working at all like it’s supposed to. Unfortunately, there’s no way to know if her body might do the same thing after this surgery.

After surgery, she was sent to the ICU for one night, just so she could be monitored more closely. Here are a few pictures of that day.

During pre-op, when she knew it was almost time for them to take her away from us

In pre-op after they put some Versed into her IV. The separation went very smoothly after this

Later that evening in ICU

Her bunny, Floppy, by her side in ICU

• Friday, 9/22 through Monday, 9/24: Roslyn did well in spite of a few normal challenges involving in getting the right balance of pain meds, and she was moved to a regular room at about noon on Friday. The rest of that day was mostly about resting and trying to control her pain. On Saturday, she woke up ready to start trying to cut back on pain meds and getting out of bed, which was pretty amazing. She actually did a very small amount of walking with her walker in our room that morning, but sadly, by late morning she started having pretty bad bouts of dizziness and even vertigo.The next few days were filled with blood tests and lots of discouragement as Roslyn tried to walk, but had to give up over and over again, saying things like, “Mommy and Daddy, you look upside down,” or “I feel like I’m falling sideways,” or “The room looks like it’s spinning around in circles.” After one such failed attempt, I asked what she was feeling, and she said, “Sadness.” She explained that she wanted to walk so she could get better so she could get home to the kids.

  In the end, they discovered that her potassium had dropped a bit low, due to very low magnesium. They were able to get these important electrolytes back into her body, and by 7:30 this morning we had a totally different little girl on our hands. Photos of those days.

First time to stand up in spite of the 10-inch incision; so far, so good

Cheering after she did one short walk

Trying to hard to walk off the dizziness later Saturday morning

Nauseated and so sad after she had to give up and get back in bed

Dizziness led to nausea and exhaustion, and then sudden sleep while trying to color

Sunday night was a low point for our girl; dizziness and nausea and sadness were dragging her down, and she just wanted us close to her

Trying to walk again on Monday, but the dizziness won again.

Daddy carrying a discouraged little girl back to her room when she wasn’t able to continue

• Tuesday, 9/26: As I said, we woke up to a very different girl this morning. She woke up with little-to-no dizziness after the overnight and early morning replacement of magnesium and potassium, and hungry and rarin’ to go. We were met with the happy news that her NG could come out and she could start on clears. She was so excited to get rid of the NG and to eat a popsicle. Then she couldn’t wait to hit the halls and walk until her legs couldn’t keep going. She’s had such a great day and is moving forward with so much speed now, that her nurses and her urology team are blown away. We are so thankful for this!

Thank you to all of you who have prayed, provided food for our kids at a home, and sent encouraging notes. We are so grateful to all of you. I’ll close with some very happy pictures from today and one awesome video.

A popsicle! First food or drink since breakfast on 9/19

It’s super hero week here at the hospital and Child Life brought a cape and mask to Roslyn’s room for her to decorate. She couldn’t wait to head back out to the hallway to show the nurses what she had made

Our sassy little girl’s got her spunk back!

A year ago today was Roslyn’s first full day at home after her bladder surgery; today, she is back in for Round Two as we keep trying to get her bladder to a healthy place.

I don’t want to do this.

I can’t even say how much I don’t want to do this.

Kathryn is still recovering from her surgery last month, and Scott and I are still just too tired. But here we go anyway. This was the prayer of our hearts as we left our kids again (for at least 2 weeks this time), and drove through heavy traffic to Cincinnati Children’s Hospital:

“Heavenly Father, we need strength for the day that is before us. You alone can give us what we need. You are our refuge and our strength — a very present help in times of trouble. You have promised to be with us, and to strengthen us. You have said that as our days are, so shall our strength be; and that your grace is sufficient for us. We accept these assurances, believing that we shall obtain help from You for every duty and every struggle  this day. We ask You for grace to perform our allotted tasks with diligence, and in all our ways to acknowledge You. Take all the tangled threads of our lives in Your own hand, and unravel them, weaving them into a web of beauty.”
~J.R. Miller (1840-1912), Family Prayers 

We are so blessed, once again, by people who have lined up meals for our kids while we are gone, and for friends and family who will be running errands and shuttling kids to work and appointments, and to our daughter and son-in-law, Greg and Kristie, who will move into our home today with their eight kids and care for everyone there.

Unfortunately, the home construction projects didn’t finish before we got to this point as we had hoped, but volunteers gave up their past two Saturdays to get it all to a point where we can pause for this two-week period and focus on the children’s needs. As soon as we get home, we will all jump back in and try to get it all finished by the end of October.

We would cherish your prayers for exactly the words of the prayer above. We can fret and point to this and that solution to our stress, but it all really does come down to resting in God’s sovereignty as He orders our steps each day, and to trusting Him to give us what we need as we function on very empty tanks. We want to believe Him when He promises to fill us with all that we need to follow Him.

Please pray for Kathryn who did not want us to leave her this morning; our other children who weren’t ready for us to be gone again, either; and for Roslyn. She still has fresh memories of how hard this surgery is, and this one is actually even harder than the one she had last year. She is nervous, but such a brave little girl.

We have discussed splitting up for this one so that one of us could stay at the hospital and one could go back and forth for the times when we are both needed at the hospital. But we have learned that the back-and-forth is actually even harder for Kathryn. She seems to do best if we just settle into a new, although temporary, normal as a routine is set up at home and we all push through to get this behind us. But it’s hard for everyone, no matter how we do it.

We will post updates as we move through these next couple of weeks. Roslyn will undergo two days of not-fun bowel prep today and tomorrow, and then surgery is scheduled for 7:30 Thursday morning.

Below is a picture of our brave girl this morning before we left the house, as she posed with her new doll that dear friends sent to her as a surgery gift. She smiled for us, but there was a lot of anxiety coursing through her little body.

“Blessed are those whose strength is in You, in whose heart are the highways to Zion. As they go through the Valley of Baca, they make it a place of springs; the early rain also covers it with pools. They go from strength to strength…”
Psalm 84: 5-7

“As your days so shall your strength be.”
Deuteronomy 33:25

I posted on my personal blog this morning. It did have some news about Kathryn’s progress, but it wasn’t exactly an update on Kathryn.

“. . . It’s more about our other kids, many of whom are serving on the long list of caretakers for Kathryn during this season of their, and her, lives. It’s more about my own heart that sometimes cries, ‘Foul!’ when my children, or others close to me, go through hard times . . .”

You can read that post at this link – The Back-Look Into My Life.

In case you haven’t heard, we did manage to finally get Kathryn home on Tuesday night. She was softly and peacefully glowing as her siblings surrounded her and poured their love over her all evening.

We are incredibly thankful that we are home, but the road is hard, and we are beginning to see how long it’s going to be.

“When God wants to move a mountain, He does not take a bar of iron, but He takes a little worm. The fact is, we have too much strength. We are not weak enough. It is not our strength that we want. One drop of God’s strength is worth more than all the world.” 
Dwight L. Moody (1837-1899)

“Do not be dismayed, for I am your God. I will strengthen you and help you.” Isaiah 41:10

This quote from a year ago popped up in my Facebook memories. (I did some quick research, and worms can pretty much totally change the habitat of an area; not sure they could take down an entire mountain, but the point is pretty clear.)  

It’s a fitting quote for this day, and I’m feeling it deeply in my worm-like self this morning. The fatigue is absolutely life-sucking as we try to keep caring for Kathryn. Her post-op care is one of the hardest things we’ve ever done (especially right in the middle of on-going-but-stalled construction in the house), and I really can’t describe how tired we are.

The wound cleanings/dressing changes are so painful for her on her open incision, and my heart is tired of watching her hurt.

Yesterday morning, she slept until about 7am. By 7:30, Scott and I were working on cleaning her up and preparing her for her first shower since her surgery. It took five to six of us working almost constantly until after 1pm to get her cleaned, her hair washed, her abdominal wound dressing changed, feed her, etc.

Here is a precious picture of Kathryn surrounded by several of her sisters during her difficult shower yesterday. I watched them doting on her and encouraging her and saw her respond to their love with smiles, and with courage to push herself through the pain. And it brought tears to my eyes as I compared this amazing picture to what her life would be like now if she had gone to the institution she was in the process of being moved to when we adopted her. It’s more than I can bear to think about.

After we finally got her ready for the day, one of these sisters gave her a manicure. She was thrilled by this.

We passed through her first day in kind of a haze of diaper and dressing changes, doling out medications, and comforting her when she was in pain. Thankfully, she is sleeping well once we get her in bed at night.

This morning, she was awake by 6am, and we started the whole process over again. As we were cleaning her wound this morning, she was whimpering and trying hard not to cry. We are dog sitting long-term for our son and daughter-in-law, and in the middle of this process, their sweet dog, Silke, positioned herself so that her face was resting against Kathryn’s face. Kathryn reached up and held onto Silke’s soft fur. What is it about schnauzers that make them such great comfort dogs? We have seen this behavior toward Kathryn in Silke before and in our own schnauzer, Godfrey.

Anyway, this quote reminded me that it’s not only okay to be weak and exhausted, but that it’s even good because it drives me back to my Father for the strength needed to get through the day. I will strive to embrace my lack of strength today and drink in great gulps of God’s.

Ways you can pray:

• healing of Kathryn’s abdominal wound
• our ability to lean on God for the strength we need
• that the roadblocks preventing the completion of this construction project would miraculously be removed so that this can be finished before we have to go back into the hospital with Roslyn on September 19. I need to get the kids’ schooling started, but I can’t even access my materials because they are all packed away until this construction can be completed and we have a place to organize them.
• patience as we care for our other children’s needs in the midst of fatigue-induced brain fog
• rest; we are very tired and need some calm days and some good stretches of sleep at night

Thanks so much for continuing to walk alongside us.

Well, we are still at the hospital. I won’t take time to go into all of the details, but it was an exhausting day full of not great communication.

Kathryn woke up this morning, still determined that she was heading home today. But we couldn’t know for sure until we heard from her urology doctor, since he’s the main surgeon in this picture.

So we waited.

And waited.

And waited.

All day.

Kathryn went from this (smiling at everyone and telling them about going home, talking our ears off about seeing the other kids and having our homecoming party tonight) . . .

Overflowing with excitement all day and telling everyone she was going home

. . . to this by late afternoon when we still hadn’t heard anything. The stress of waiting and not hearing anything definite finally became too much for her emotionally.

Too much stress while waiting for answers

The kids at home were slowly falling apart, too, as they waited for word. And we got to practice patience in the midst of incredible frustration as hour after hour ticked by.

Finally at 7:30 tonight, our surgeon came to our room. He had been tied up all day with surgeries and meetings, but thought we had been told we were staying another night. We had a productive talk about communication breakdown and worked through the feelings resulting from that. It turns out that her wound culture did finally grow something. Three somethings, in fact. Two of them are the same as the bacteria causing her UTI, so they are pretty sure those positive results were just contamination from that. But the third was something different. They wanted to take one more night on IV antibiotics and take time to discuss whether she will need further treatment for that before sending us home.

So here we are. We were able to get Kathryn a fun snack left here by a friend earlier in the week, talk her through this decision, and promise her that we will do something fun with her tonight here at the hospital. She wanted a pizza party, so pizza party it is. She calmed down and accepted this unwanted news while eating her snack and waiting for her pizza to arrive from the hospital cafeteria.

And now, she has already moved on to being smiley and excited about going home tomorrow. Child-like faith. I want that. I need that.

We were also able to meet with the Wound Care Team this morning as we had hoped, and they gave us great products (they always carry magic around in their wound care bags) and clear instructions about how to help heal this very ugly wound that has now taken over the entire length of her incision. We feel good about this now.

Our urologist has promised us that, barring any emergencies, we will definitely be going home tomorrow. Scott called and talked with kids at home and encouraged them to pull together and hang on for one more night and that we would all be together tomorrow. They sounded good by the time he hung up with them.

So. We learned new lessons today about being willing to be used where we are placed and about waiting on God’s timing.

And Kathryn taught us how to adjust joyfully in the midst of disappointment.

I want to close with this picture that I forgot to post yesterday. I love this photo. If you were following our blog a year ago, you might remember the post about Maggie and Murphy. Well, the gift shop now sells a GIGANTIC Maggie and Murphy! Kathryn held them for the photo only. They are not coming home with us.

Pretty cute, though. Right?