Exciting News and Pre-Christmas Sale!

Books are here!!

 

Look what just arrived! Boxes full of Through the Branches: Tales From the Life of an Unusual Family. This is not, yet, the promised follow-up to our first book, but rather a smaller companion to that book.

This book, and our first book, Swaying in the Treetops, are both now available online at Barnes and Noble and Amazon. (E-books will be available there in the next few weeks.)

Swaying in the Treetops retails for $33.99 and Through the Branches for $17.49 (prices set by the publisher).

 

But we are offering, as a pre-Christmas sale, signed copies for $25 and $12, respectively, including shipping and handling.

 

Click here for details and ordering information.

Please make sure you provide the name(s) of the recipient(s) with correct spelling on that online form, and if you’d like a personalized signing, please share something about the recipient(s) and/or their story. Otherwise, we will be happy to just sign with a generic little note.

This is from the publisher’s Diagnostic Review if you’d like to know more about our newest book:

“[In Through the Branches, written] as a companion to their first book, Swaying in the Treetops, the authors share a collection of vignettes that offer an inspiring and entertaining look into the daily life of their large family. With both biological and adopted children, the authors use their real-life stories to encourage other parents and families to embrace the wonder of family relationships. The book is written eloquently and fluently, clearly expressing the story of a unique family and the daily happenings in their life. The writing is easy to understand, detailed, and beautifully written, showing the wonders of life in their family. The authors have portrayed valuable personal experiences, with humility and authenticity, that show true vulnerability that can greatly impact the reader. Many books about family life try to make everything seem perfect, but this book shows the reality of family life, with its challenges and victories, and reveals the beauty of genuine storytelling in family relationships.”

We are so excited to share these stories from inside our family’s home. All proceeds go to The Shepherd’s Crook Orphan Ministry.

Would you please help us spread this news by sharing this blog post?

 

 

Surgery Canceled!

Wow. We got a call from Children’s Hospital this afternoon, only about fifteen hours before this huge surgery. They’ve had to cancel. We don’t know much, yet. Only that there has been an emergency involving Lilyan’s primary surgeon. We do know that he has felt much urgency about getting this done, and that he would never cancel unless it was absolutely necessary.

Tomorrow morning we will call his nurse and get more information and try to figure out what the new plan is. Lilyan has had quite a bit of back pain this past week, so we are worried about having to put this off at all. And we know that coordinating schedules for three surgeons is a big deal, so we don’t know how quickly this could be rescheduled. And we don’t even know if this emergency is something that will prevent her surgeon from operating for a long time or not. We just don’t know anything, yet. So we wait.

It’s been a weird day, even before this phone call. Over the past week, God so graciously allowed us to put Lilyan’s surgery in a box and leave it there so that we could mostly just focus on being with the kids and doing fun things and watching their hearts for any struggles with anxiety over what’s coming. We were amazed at how little this coming event affected our time together or intruded into our thoughts. But when we woke this morning, knowing that surgery was only 24 hours away, it was suddenly all we could see and feel for the moment.

We had already planned to fill this day with making caramel apples, watching the Bengals, and carving our pumpkin for this year, but we felt somehow kind of numb and disconnected from ourselves and like we could hear every second ticking away on the clock as we moved through these activities with the kids. We knew, though, that we were glad that it was finally almost time to get this done. And then the phone call.

We gathered the kids and explained to them what had happened, prayed together, and are continuing with our plans for the day, but we’re also having a little trouble processing everything we are feeling now.

We will post more as soon as we know more. Thank you for hanging with us in this strange place of limbo. We know that, even though it feels like limbo to us and maybe even kind of out of control, God is still firmly in control and that everything is proceeding according to His plan.

I’ll close with a few pictures of our day together today.

Making Caramel Apples 10-28-18 #5

Making Caramel Apples 10-28-18 #6

Making Caramel Apples 10-28-18 #7

Pumpkin 2018

Making Caramel Apples 10-28-18 #1

Making Caramel Apples 10-28-18 #2

Making Caramel Apples 10-28-18 #3

Lilyan’s a little emotional over all of this, too. She said she feels both “happy and sad.”

Our Good, Good Author!

Well, God does write amazing stories.

I have some exciting news to share, but first, thank you all who prayed for Scott’s and my getaway. It really almost didn’t happen. We were 2 1/2 hours later leaving than we had planned (due mostly to continuing issues that needed to be talked through with a few of the kids), and then about thirty minutes down the road, I broke a tooth. That nearly did me in, and we almost gave up and went home. But it never started to hurt, so we just kept going. In the end, it was such a wonderful trip; it was, possibly, the best trip we’ve ever had together in our forty-one years of marriage. We are so very thankful that God blessed us with this time away, and we do feel much more ready to face Lilyan’s surgery on Monday.

Now . . .

Scott and I did our first adoption in 1998. From that point forward, the longest we ever went between adoptions was two years and four months. Until now. It has now been three years and two months since Nolan came home to us in August 2015. We felt pretty sure he would be our last adoption.

We were wrong.

We are adopting again, but this isn’t like any other adoption we’ve ever done. If you’ve read our first book, Swaying in the Treetops, then you may remember that our adoption journey started with a little girl named Raiza Sangueza in 1997. She was not eligible for adoption, but came to our family from Bolivia as a medical-foster situation at the age of seven, and her entrance into our lives changed us forever and proved to be the conduit for our first actual adoption of Nathan. It all started with her.

She lived with us for about a year on that first visit and became very much our daughter in our hearts. This story is a very long one, and maybe we will have a chance to tell it fully someday. But over the next few years, Raiza came to us two more times, staying as long as two years at a time. The last time we saw her, she was twelve years old, and it broke our hearts, and her heart, that we could never adopt her. When she returned to Bolivia that last time, we all lost contact with each other for a decade.

Again, it’s a very long story, but God eventually answered a million prayers and brought us back together. You may also remember that she and her daughter, Jhannel, arrived here in America a few months ago and have been living with us since that time. She is twenty-nine now, and never stopped calling us, or thinking of us as, Mom and Dad. I will never forget that hug when she got off the plane — our first hug for each other since October 2001. It’s such a miracle that she is here and back in our lives.

We are slowly learning about the really tough things she went through during that decade we were cut off from each other. But that is her story to tell someday when she is ready. We will say that she is going to be a very bright light for God’s kingdom someday, and will have so much help to offer others when the time comes. Her story of healing is a beautiful one, and it’s such an honor that God is allowing us to walk by her side for this incredible part of her journey.

We learned just a couple of months ago that, in the state of Ohio, it is possible to adopt an adult as long as there was a parent-child relationship between the adopters and the adoptee while the adoptee was still a minor. And as long as adoption is what both parties want.

There was. And we do. It is what we have all always wanted since God first brought us together.

So on November 19, our family will, one last time, gather in the Butler County courthouse as Judge Randy Rogers finalizes one more Rosenow adoption. On that day, Raiza Sanqueza will officially become what she has already unofficially been now for twenty-one years — Raiza Jane Rosenow.

We want to invite anyone who would like to attend. If you think you might like to be a part of our huge celebration over this miracle, please jot us a note to let us know. We will give you the rest of the details at that time. We would so love to fill the courthouse that day with people who have been a part of Raiza’s story in any way through the years and/or anyone who would like to join us during this very, very special time for our family as we officially adopt our 23rd child (who was actually really our first non-biological child). We are still shaking our heads in surprise at God’s revelation now of His plans all those years ago.

She will also be changing Jhannel’s name to Jhannel Amalia Rosenow, our precious and so-loved granddaughter.

Here is a beautiful picture of Raiza Jane and her daughter Jhannel Amalia. Just a quick story about the name. We used to, jokingly, call her Raiza Jane when she was a child, and when it came time to choose her new middle name for her adoption paperwork, she asked if she could have this one. The very cool thing about this is that the name “Jane” means, “gracious gift of God” — which is also the same meaning of “Jhannel.” This daughter and granddaughter are truly very gracious gifts from our God. We are awed.

Raiza and Jhannel 9/25/18

To Go or Not to Go

I just wanted to send out a fairly quick update to my last post because I promised to send a link for meal sign-ups in case anyone wanted to help provide meals for our kids at home while we are in the hospital with Lilyan. You should be able to go to this Meal Train link and sign up. There are some dates still left open, and all important info (number of people eating, time for meal delivery, food allergies, etc.) is there. We will also try to post photos and updates there as we go through the surgery and post-op period.

Also, a number of you have been praying about Scott’s and my getaway and have even written to ask if it’s going to happen. Man! It’s like all the powers of Hell have been trying to prevent this trip.

One of the things we felt was critical to helping make this happen was a day off for all of our big kids. So on Thursday, Scott and I sent the twelve oldest out for a time of rest and fun. Then he and I decided to see if we could manage a little trip to Sharon Woods for a quick hike with the nine who were left here (including granddaughter Jhannel). It was hard, especially with the limitations caused by my Achilles tendon inflammation, but we had such a great time with them, and I just iced a lot after we got home. I’ll post a few pictures at the end of this post.

The older ones had a great time and returned that evening refreshed and ready to jump back in. So we began making plans, in earnest, to move forward with the trip.

Then yesterday morning, everything began falling apart.

  • Roslyn has been having stomach pain for about a week. Short version of the story is that, as the week passed, we (along with a couple of her doctors) were able to determine that there didn’t seem to be anything wrong urologically, and that it appeared to be a problem with her colon and the incontinence issues she struggles with. Her colorectal doctor got involved, and we were able to help ease her pain, but it still hasn’t gone away completely. They are all stumped and are checking urine again to make sure we aren’t missing something. We were concerned about leaving her with things still unresolved.
  • Then there’s our dog, Saxon. He is such an awesome dog for our kids, but he has been unhealthy and on heavy medications for years (vet’s best guess is that he is allergic to, well . . . pretty much everything). He was doing so great this past summer that we tried slowly weaning him off all of his meds. He was better than we had seen him in years  — no allergy issues, no lethargy caused by the meds.  He was playful and frisky and so happy. We were down to only one pill a day and planning to cut that one today. But yesterday, he erupted in a terrible systemic allergic reaction. As I type this, Scott is off to the vet with him to get a steroid injection.
  • Ethan, whose seizures have been stable for months, had a mild seizure Thursday evening, after some hints of possible seizure activity during the past week. We reached out to his neurologist yesterday, and he has increased Ethan’s meds a bit, but we were concerned about leaving him with things still kind of uncertain.
  • One of our middle kids, and one of our younger kids, has been going through some behavioral regression. Parenting these kids from hard pasts is no joke, and it takes so much time and energy, and sometimes there’s no way to predict what might set them back. We thought we had gotten through this with both of them, but yesterday some really ugly stuff came out, and we are, once again, dealing with some deception and manipulation and pretty significant selfishness. We understand where this comes from, but it has to be dealt with, of course.

Anyway, we decided yesterday afternoon that we just couldn’t leave them, and were working hard to get a handle on our deep disappointment about this. Then some of the older kids urged us not to give up and cancel the trip, in spite of everything that was happening. They kept trying to assure us that they are well-trained and prepared to handle these things for just a few days.

Scott and I spent some more time talking and organizing a list of ways for them to handle the unresolved issues if anything came up, putting together a clear plan for the two whose hearts are in not such good places at the moment, and devising back-up plans that would involve reaching out to our oldest daughter and son-in-law if needed (even though they are dealing with many life struggles of their own right now).

Robyn helped me put a structured schedule in place that includes crafts and organized games and other activities, as this is a critical piece to keeping things flowing smoothly — unless unexpected problems come up (then they go to the back-up plan.)

Bottom line — barring any catastrophic events today or tomorrow morning, we are planning to pack up and try leaving at about noon tomorrow. This is mostly because it has become clear to us that it’s really important to our kids that we try to do this. They really want to give this to us.

If you think to pray that we can leave this all behind and just focus on each other and resting up for this surgery together, we would love that. Also, that the kids here will work together and that health issues will remain stable until we return, and even that they will have fun while we are gone. And especially for our children’s hearts as we stay the course in our attempts to help them all find healing from their histories.

That’s it for now. Thank you to all of you who pray for, and help care for, our family so faithfully, year after year.

Here are a few photos of our time with our younger kids on Thursday:

Park with 9 Littles 10-11-18 #2

Granddaughter Jhannel helping Lilyan get her jacket on

Park with 9 Littles 10-11-18 #3

Here we go

Park with 9 Littles 10-11-18 #8

We sure missed the big kids as we fought to get all those wheelchairs over the rocky path, but Ethan and Shannen and Nolan were great helpers

Park with 9 Littles 10-11-18 #4

Jhannel, stopping to check out some wildflowers

Park with 9 Littles 10-11-18 #11

Roslyn and Jhannel

Park with 9 Littles 10-11-18 #7

Our little hiking crew

And Now it’s Almost Time

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 - Preparing for Surgery Oct 2, 2018

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.

 

Rough Road Ahead

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 definitely 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 told, and to wrestle my emotions into a place of being ready to write this post.

Visit to Spine Surgeon 3-2018

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.
New Dressers

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

 

 

 

 

 

 

 

 

 

Medical Supplies for R, J, &L

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.
Flu 2018 #2

Fighting flu and watching the Olympics

 

 

 

 

 

 

 

 

 

Jaden's 8th Birthday #1

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?!

March 2018 B'days - Trio

  • 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.

Wesley Xavier

  • 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 Jhannel - Spring 2017 #2

Raiza and her daughter, Jhannel

 

 

 

 

 

 

 

 

 

 

Raiza's Room #3

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. 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.

Lilyan's Back 3-2018 #2

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.

Lilyan's Back 3-2018 #1

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.

Lilyan - 3-2018

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.

Not Even a Feather to Him

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:

Van Breakdown Feb 2017

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.

Happy New Year 2018.jpg

 

 

Capricious Turns in Life

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

Blog Update #2

Seasonal clothes switch-out to Carpenters tunes in the background

Blog Update #3

Volunteers ripping out old, stinky carpet

Blog Update #4

Another volunteer addressing rotting wood in an upstairs bathroom

Blog Update #6

A group of teen girls painting a room for us

 

Blog Upddate #13

Working on some school

Blog Upddate #11

Our wonder dog, Godfrey, helping Kathryn with her PT

Blog Update #8

An orthodontic evaluation for Kathryn

Blog Update #5

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

Blog Upddate #12

Jaden’s rod-lengthening surgery

Blog Upddate #9

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

Blog update #7

A few days together with our youngest grandson

Blog Upddate #24

A morning outing with our two youngest grands

Blog Upddate #22

Cheap and relaxing date day

Blog Upddate #10

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

Blog Upddate #14

Badly-needed family outing to the zoo

Blog Upddate #15

Happy Halloween

Blog Upddate #16

Jaden and Nolan

Blog Upddate #17

Roslyn and Lilyan

Blog Upddate #18

Sweet Kathryn

Blog Upddate #19

Owen

Blog Upddate #20

Saxon the friendly lion, and Godfrey, as Godfrey Graybeard

Blog Upddate #21

The morning after

Blog Upddate #21

Some of the kids and some of the grands

Blog update #31

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

Blog update #33

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

Blog Upddate #25

My mom with most of her great-grandchildren

Blog Upddate #27

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

Blog Upddate #28

Kathryn after her surgery this morning

Blog Upddate #30

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…

 

Pain, Spunk, Dizziness, and Victories

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.

 

Roslyn's Augment - NG Insertion 9-19-17

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.
Roslyn's Augment - Night before Surgery 9-20-17

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.

Roslyn's Augment - Before Versed

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

Roslyn's Augment - After Versed

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

Roslyn's Augment - ICU #1

Later that evening in ICU

Roslyn's Augment - ICU #2

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.

Roslyn's Augment - First time standing 9-23-17

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

Roslyn's Augment - First time to Stand 9-23-17 #2

Cheering after she did one short walk

Roslyn's Augment - Too dizzy to walk 9-24-17

Trying to hard to walk off the dizziness later Saturday morning

Roslyn's Augment - Too dizzy and sick 9-24-17

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

Roslyn's Augment - so tired 9-23-17

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

Roslyn's Augment - So dizzy and discouraged - 9-24-17

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

Roslyn's Augment - Trying to beat the dizziness 9-23-17

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

Roslyn's Augment - Too Dizzy 9-23-17

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.

Roslyn's Augment - Popsicle! - 9-26-17

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

Roslyn's Augment - Cape - Mask - 9-26-17

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

Roslyn's Augment - Cape - Walking - 9-26-17

Our sassy little girl’s got her spunk back!