I Myself Will Go With You

“[In Exodus 33] Moses asked to be shown the way. The way is not shown; but better than this, God says, ‘Trust Me — I Myself will go with you!’ He will manifest towards you the same Shepherd love. The way may be very different from what we could have wished; what we would have chosen. But He has His own wise and righteous ends in every diverse turning in it. When His sheep have been conducted to the rougher parts of the wilderness He, their Shepherd, has gone before them. When their fleece was torn, and they were footsore and weary, He has borne them in His arms! Let us trust Him for an unknown future. He seems to say, ‘Pilgrim in a pilgrim land! My presence shall go with you in all your dark and cloudy days; in your hours of faintness and dejection; in sadness…”
~John MacDuff (1818-1895)
“And He said, ‘My presence shall go with you, and I will give you rest.’” Exodus 33:14
Life continues to be very hard and very unpredictable.
We continue to fight, and periodically we succumb to the weariness and discouragement. That’s kind of where we are this week. In the Valley of the Tired and in a place of feeling some discouragement and even some sense of defeat.
It’ll pass, but there’s really no getting around it. Whenever we reach this point, we have learned that we have to acknowledge it, look up, and place it in God’s hands, asking him to carry us through while we wait for him to breathe renewed strength into our tired hearts. We know he will. Even if we can’t feel that we know it, we know it.
Two years ago today, Kathryn spent eleven hours in the OR for her major bladder surgery. She had been very, very sick for almost a full year, and it was our hope that this surgery would finally bring her back to a place of health.
Kathryn's Big Surgery August 8, 2017

Kathryn, holding her blankie just before they took her into the operating room on this day in 2017.

Although it took several hard months after the surgery, this did happen. The surgery was a huge success, even greater than we had hoped for, and our girl enjoyed wonderful health and peace. For about 20 months.
Then this March, while we were in ICU with Lilyan, right after her big surgery, Kathryn developed a pretty serious urinary tract infection. We weren’t alarmed initially because this will happen from time to time because of her bladder reconstruction and her cerebral palsy. This was on March 25. Then on April 25, she was diagnosed with another UTI. And again on May 28. This has continued happening just about every thirty days for five months now.
She has been on so many antibiotics over these past months that she is beginning to experience some intestinal challenges now, too, even though we keep her on a significant daily regimen of probiotics. And no one can figure out what’s causing these infections to plague her so continually.
She finished her fifth round of antibiotics yesterday, but she is still showing some lingering signs of infection. Our urologist has made the decision to bring Infectious Diseases into the picture now, which we are very glad about. We have developed a really good relationship with the doctors in this department throughout this year as they have worked closely by our sides to care for Lilyan’s spine incision that won’t heal, and to help us solve Roslyn’s new issues with antibiotic resistance.
We are praying that they will be able to find the reasons behind Kathryn’s infections, and especially to find a solution for breaking this cycle of infection that her urinary system seems to be stuck in. We are already communicating with them and hoping to see them with Kathryn next week. But this means more appointments and more searches for answers.
Lilyan’s twenty-second surgery was done this past Tuesday (Aug. 6). The report was the same as previous weeks. Healthy tissue is continuing to grow over the hardware in her back, although more slowly than everyone would like. But, week after week, we also hear that there is one area, described by the plastic surgeon as “a deep place under her hardware,” that just won’t fill in and heal. Everyone is baffled by this, and no one seems to know what to do about it.
Also, the piece of hardware that fractured through her sacral bones is continuing to shift and putting her at greater risk for soft tissue breakdown in her lower back, which is an area that is beautifully closed and healed. This is in spite of the fact that we continue to keep her positioned mostly on her stomach with the use of a large, soft wedge.
Her orthopedic spine surgeon ordered a CT scan of her back to get a better look at things. This was scheduled to be done right after her surgery on Tuesday.
Just before she went in for this scan, we learned that one of his reasons for ordering this scan was to determine whether or not her spine fusion had “taken” sufficiently to actually remove the hardware from her back. We don’t really understand what this means, and the thought of opening her back up again, after fighting so hard all these months to get it to heal, was just more than we could grapple with at that moment.
CT Scan 8/6/19

CT scan as we continue to look for answers

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

July Birthdays #7

Our three July girls

July Birthdays #4

Madlin turned 21

July Birthdays #6

Shannen turned 13

July Birthdays #1

Lilyan turned 10 (and chose fun, summery lemonade decorations)

Lilyan's B'day #3

We’re always looking for activites that Lilyan can do while positioned on her tummy on her wedge pillow. She is suddnely very into braiding hair, so she was super happy to get this!

It is All Part of the Plan

This blog post is being written in the afternoon of Monday, July 29, 2019.

“Suffering is not a haphazard thing that comes in. It is all part of the plan. Suffering is part of the road to the eternal glory. It is just as much included in the plan as all the rest. Why should there be this interlude of suffering between the grace and the glory? ‘He himself will make you perfect, establish, strengthen, settle you’ (1 Peter 5:10). He will perfect you. The word here translated ‘perfect’ means ‘to repair’. It is precisely the same word that you find when you read that the disciples were mending their nets, and it means to finish, or to put into repair. There are many little rents in us, and the Lord allows us to go through this little while of suffering so that he may repair the imperfections. There is not here a child of God who is not the richer and the holier for the little while of suffering.”
~ Archibald Brown (1844 – 1922)

It has been many weeks since I updated everyone. I’m so sorry, but life continues to bowl us over, and doing things like writing blog posts is quite challenging. I’ll try to update here without making this too, too long.

Last Wednesday, July 24, Lilyan turned ten. Double digits. A pretty big birthday. She also had her twentieth surgery that day.

This coming Wednesday, day after tomorrow, it will be exactly nineteen weeks since Lilyan’s first surgery, (the night we came so very close to losing her), and it will also be her twenty-first surgery. We are still running into people who were in that crowded,  operating room that night, fighting hard to save our girl, and these people continue to remind us of just how close it all was. We never lose sight of what an amazing gift it is that she is still here with us, but life continues to be very, very hard.

The last time I wrote, I shared that Kathryn was fighting her third urinary tract infection (UTI) in as many months; that Roslyn was in the hospital for a serious UTI herself, and on IV antibiotics because the bacteria her body continues to produce is dangerously resistant to antibiotics now; and that Colin was showing great improvement in his seizure activity after starting his new anti-seizure meds.

Well, since that post, Kathryn has had two more UTI’s, making that five in five months, and no one knows what’s causing this except that it’s, in some way, related to her cerebral palsy. She started on a new antibiotic today. Also since that last post, Roslyn has been back in the hospital again and came home with another PICC line in place. That was removed about ten days ago, but she has continued showing some symptoms (mild, but still there) of another infection. To date, her culture isn’t showing an active infection, so we are just watching her for now, but it’s so concerning that she can’t get completely free of these symptoms. And Colin began exhibiting signs of seizure activity again. Our neurologist increased his dosage quite a bit, and we are watching him closely. Things have improved at least some for him.

We are all still dancing to the tune of a surgery every week for Lilyan, and after her surgery two weeks ago, our surgeon explained that her healing seems to have halted a bit. She made it clear that we still are not even in the final stretch of this journey. This was so very discouraging for us to hear, because I think that we had all, on some level, begun to think that we were nearing that place. I hit a very low point again that evening.

We truly have no idea how many more weeks/months this is going to last. Thanks to our careful quarantine strategies, constant use of Juice Plus, and God’s gracious protection, everyone has remained healthy. We are so thankful for this, but we are so very sick of being isolated from the world.

We sometimes start to wonder if we’re being too crazy-overprotective, but every time we start to think that, our surgeon makes it very clear that it’s critical that we continue to live this way. Lilyan must have these surgeries every week, and if she should get even a cold, she would not be able to be put to sleep for the necessary debridement of her wound, and wound VAC dressing changes. So we remain mostly cut off from the world around us. This is not fun and it’s not easy.

On top of this news, there has also been more bad news concerning the hardware in Lilyan’s back. At the base of this large amount of metal in her back, things were anchored to the piece of sacrum that Lilyan was born with (she is missing most of the sacral bones). Sadly, that anchor point fractured through her little sacrum. This loose end is now protruding away from her spine and into the soft tissue in her lower back, putting her at risk for more tissue damage. You can see this in the X-rays below, especially in the profile view.

Lilyan's Hardware broken #2

Full view of Lilyan’s hardware, placed during her 14-hour surgery on March 20.

Lilyan's Hardware broken #1

You can clearly see the pointy end at the base that is pressing on the soft tissue in her lower back

Her spine surgeon will have to do another surgery to open up her lower back and snip off this end, but everyone is trying to determine the best and safest time to do this surgery. In the meantime, because it’s most prominent in a sitting position, Lilyan has to spend almost all of her time on her stomach. This has been another emotional blow for her, adding to her feelings of helplessness and loss of normal life and independence, but the other kids work so hard to find ways to keep her included in daily life and actively engaged mentally and as physically as possible. Our kids are working so hard to help us care for everyone, and we could not survive with out their loving and unselfish service right now.

Lilyan on Stomach 6/24/19

Through all of these many, many weeks, Scott and I remain as vigilant as we possibly can in continually sending out our mommy/daddy radar to see how everyone is faring through all of this. Some days are better than others. When needed, we hold family meetings to allow everyone to share their feelings and even weep openly to clear their minds and hearts of the emotions they are carrying. Then we all wipe away our tears, pull together again, and march forward. We often end these exhausting (but critical) family sessions with something fun, like a late-night movie. When ice cream can be part of that conclusion, that’s even better.

God has so lovingly used this time of isolation to draw all of us closer to each other; to refine us each individually and as a family; to build character; and to reveal selfishness, resentment, refusal to surrender to God’s plans for our lives, lack of faith, and fear hiding in each of our hearts.

As my quote above says, “There are many little rents in us, and the Lord allows us to go through this little while of suffering so that he may repair the imperfections.” What a loving and gracious God we have. I’m not always able to proclaim that. I am sometimes groveling on my face or shaking my fists or so very lost in my tears while begging God to bring this season to an end, that I lose sight of this beautiful truth. But He always brings us through those times and back to places where we can see His hand and His love in these clouds.

He has also continued to provide for us in practical ways: gifts of meal cards, or cash to provide for food in the hospital or the many necessary ordering-out meals required right now as we mostly live in survival mode; money to purchase all of the children’s curriculum for this coming school year; and many other things. Thank you so much to all of you who have been His instruments in providing for our family in these ways. And more than we can ever say, thank you for your prayers. They are truly what keeps us going.

And while we haven’t been able to do any more park days because it’s usually too rainy or too hot on any of our appointment-free days, He has provided other ways for us to come up with creative and fun things to do together as a family. Like some days to just relax and swim together in our pool. You may remember that this pool was a Make-a-Wish pool for Lilyan four years ago. She asked for this so that “my family can all swim together in one pool.” How heartbreaking that she is the one unable to be in the pool at all this summer. But, in spite of some periods of crying and expressing sadness, this girl continues to be courageous, and strong, and to rise above the darkness, and to look for the beams of sunlight. She is an amazing example for all of us.

Here are some photos of our past few weeks since my last update, including one of the most exciting and fun things that God provided for us to do. Dear friends sent us a huge box of giant lanterns to light and release into the sky. On one of our most recent hardest days, we chose that night to release them. We all watched the movie “Tangled” to get us even more pumped about our own lanterns, then after the younger ones had slept for a couple of hours, we woke them up just before 10pm and spent the next hour or so eating popcorn and releasing our lanterns. It was a magical night. There’s even a video below that will give you a little feel of what a special time it was for all of us.

Being Granddad 6/29/19

One of the hardest things about this long, painful challenge is not being able to see our grandchildren who live only fifteen minutes away. We’ve only seen them twice since Christmas. This one dear granddaughter lives with us, so we still get to see her every day. She and granddaddy had such a fun time playing in the pool together on this day.

Lilyan's Summer 6/29/19

During the times when Roslyn has a PICC line in place, she isn’t allowed to swim, so she keeps Lilyan company under our big deck umbrella at the side of the pool during these times.

Our Three Sick Girls 7/4/19

Our three little struggling girls, Lilyan, Kathryn, and Roslyn, spending some time playing together in the family room.

The 4th 2019 #1

Roslyn got out of the hospital just in time for us to keep up our annual 4th of July tradition of watching fireworks in our driveway. Here is granddaughter Jhannel experiencing these for the first time.

The 4th 2019 #2

Jaden and his 4th of July sparkler.

The 4th 2019 #4

Nolan and his 4th of July sparkler.

The 4th 2019 #6

I love, love, love this picture of Madlin and Kathryn.

June Birthdays

Earlier in July, we finally managed to celebrate the June birthdays (except mine, which was my 60th this year! I’ve decided to wait until I can do this with my grandchildren, even if I have to wait until the end of the year.) We still haven’t celebrated our July birthdays, yet, but I’m working on a plan for that.

Grandkids 7/4/19

We try to stay in touch with our grandchildren via silly Marco Polo videos. But that’s just not the same as being with them. The kids are all missing each other so much. How long, O God?

All Four Rosenow Dogs

We occasionally get to do fairly normal things — like getting all four dogs’ annual exams and immunizations done. I included this picture only because the rare normal things make me happy. And because this particular picture makes me smile. Little white Teddy, old man Godfrey, silly Silke, and big, sweet, always-sick Saxon.

New Red Shoes 7/2/19

New red slippers for surgery day. Little things are all big things these days — whether good or bad.

Lantern Release #1

Watching “Tangled” to get us all ready to release our lanterns a few hours later.

Lantern Release #3

It took longer than you can possibly imagine to get everyone moved out to the backyard and set up on these blankets with popcorn to wait for the lighting of the lanterns.

Lantern Release #15

I love this picture of our previously-launched lanterns in the background, and all of my babies in the foreground. Everyone loved this so much.

Thank you for praying for all of us and especially for our tired-but-strong little Lilyan. We will eventually get through this. We have all discussed how important it is that we not waste one moment of this time. Whatever lessons God has for us in this, whatever things He wants to reveal to us about ourselves, each other, family unity; teach us about how to grieve or how to celebrate or how to be grateful; show us about how to comfort others, express emotions in healthy ways, reach out for help  . . . we want to be sure we can look back and know that we drank it all in, embraced it all, and didn’t waste one moment of these months.

Beautiful Girl - 6/27/19

Our brave, beautiful Lilyan Moriah.

 

 

Grace That Orders Our Trouble and Pain

I’m writing this update from beside our daughter’s hospital bed. Not Lilyan’s. Roslyn’s. Not at all what we had planned.

While I’m here with Roslyn, Scott is trying to get back home where Lilyan’s wound VAC alarm is going off, alerting us to a leak, which needs to be addressed asap. He is stuck in stand-still traffic on I-75.

Lilyan’s seemingly-never-ending spine saga continues. She still has fever every day. She still has backaches and headaches every day. She still has surgeries every week. She still has her wound VAC in place, and it still wakes us many nights alarming and requiring fairly involved dressing changes to keep it functioning. And we are all still living in as much a state of hide-from-germs quarantine as possible.

Healing is happening, but it’s still very slow and there is still no hint that the end of this is coming anytime soon.

Now, back to Roslyn. Both Roslyn (who has spina bifida) and Kathryn (who has cerebral palsy) developed UTI’s over the past couple of weeks. In fact, Kathryn has had three UTI’s during the almost-three-months we have been caring for Lilyan. After their terrible bladder challenges and huge bladder reconstruction surgeries back in 2016 and 2017, and then their recoveries, and finally since their return to health around the end of 2017 and beginning of 2018, both Roslyn and Kathryn have been doing great. Until now. We are still a little uncertain about what’s causing Kathryn’s infections to return, but we understand some of what’s causing Roslyn’s trouble.

If you’ve heard or read anything about the antibiotic resistance crisis, then you’ll understand why we are really worried to learn that Roslyn has developed a pretty significant resistance to antibiotics. We learned about this last week as they were trying to figure out how to treat her current UTI. We also scheduled an appointment with Lilyan’s Infectious Diseases doctor so that he could meet Roslyn, help us better understand what all of this means, and become involved in the future treatment of her infections. That appointment is scheduled for June 17. We hope to understand all of this better after that appointment.

Unfortunately, when Roslyn woke up yesterday (Sunday) morning, it became clear that her body wasn’t responding to the antibiotic they were trying, and within a few hours, it was also clear that the infection had moved to her kidneys. She was a very sick little girl and getting sicker before our eyes. So we brought her into the ER late yesterday afternoon. There, the Urology Department, Emergency Department, and the Infectious Diseases Department all worked really well together and got her started on an IV antibiotic that everyone thought she would do well with.

ER 6/9/19

SO Sick - ER 6/9/19 #1

We had a bad night here at the hospital as her fever really didn’t want to come down and as her Foley catheter continually clogged, keeping her bladder from draining.

But the good news is that she is definitely some better today (although her fever is climbing again as I type this), which seems to mean that we have found an antibiotic that will work for her this time. It may not work next time, but it seems to be working this time. There is an oral form of this same drug, so we are hoping we won’t be here very many days before they will let us go home and continue treatment there — if she keeps responding well.

Doing Better 6/10/19

Friends have rallied, again, and are feeding our kids back home, and we have a plan in place that will allow us to be with Lilyan for her surgery on Wednesday if Roslyn is still in the hospital as we expect her to be. Friends and family are SUCH gifts!

In the middle of all of this craziness, our 21-year-old son, Colin, was also diagnosed with a pretty serious seizure disorder. Colin was born in Bolivia at only twenty-six weeks, and miraculously survived, but lost his vision. His latest testing showed seizure activity in multiple portions of his brain. Our neurosurgeon felt that he has probably been having seizures for years, and that they are probably (although we’ll never know for sure) a result of his very premature birth. Unfortunately, we didn’t catch any outward signs of seizures in past years. I have moved through a whole range of emotions in processing this information, and I have wrestled with a lot of mom-guilt that we must’ve missed things we should’ve picked up on. Mom-guilt is a real thing. Whether it’s valid or invalid, it’s real. But we can’t go back. We can only move forward. I’m mostly at peace with this now.

While we were in ICU with Lilyan back in March, Colin had some very obvious seizures, and that’s what prompted this search for answers. He is on medication now and we began almost immediately seeing improvement. We are beginning to feel some excitement about how his life and ability to function will probably improve now that this has been discovered and is being treated.

Colin on Hike 6/2019

Colin on our most recent family hike in the woods, after starting on anti-seizure medications. He was more animated and interactive than we’ve seen him in quite awhile.

But all of this has been really hard, and there are a number of other challenges that I’m not even going to take time to go into here. We pray for rest and a break, and we wake up to new “trouble and pain” day after day.

Yesterday (Sunday) morning, as we were watching Roslyn and trying to determine if we needed to take her to the hospital, we went ahead with our planned family service. The topic was God’s sustaining grace, and it was just what we needed to hear to prepare us for a trip to the ER a couple of hours later, ending with another unexpected hospital admission.

I texted our older kids to let them know we were headed to the ER with Roslyn and said, “You reach a point where you just know you can’t take anymore and then something happens that you’re sure you can’t cope with. But you don’t have a choice, so you just do. How long will that work? We had our little family service this morning as we were watching Roslyn and trying to decide what to do. It was on sustaining grace. We are crying out for that right now and I know that’s the only thing keeping us going anyway.”

During that home service, Scott drew heavily from a post from John Piper’s Desiring God blog. I’d like to share a little of what Mr. Piper had to say:

I wrote a four-line poem called ‘What Is Sustaining Grace?’ Here’s its definition in four lines.

Not grace to bar what is not bliss,
   Nor flight from all distress,
But this, the grace that orders our trouble and pain,
   And then in the darkness is there to sustain.

That’s what I mean by sustaining grace. If I were to define grace for you as that which bars what is not bliss, that which is flight from all distress, or that which can’t possibly order your trouble and pain, I would be a liar. I would be unbiblical, and I would be out of sync with real life and real experience. It’s just unbiblical to think about mighty, sovereign grace in that way.

[About] Paul in 2 Corinthians 12. Remember the thorn in the flesh? We don’t know what it was, but it was thorny. It was painful, and so he cried out, ‘God, take it away! God, take it away! God, take it away!’ Three times he cries out, and three times the answer comes back, ‘No, no, no.’ Then Paul gets it, because of the reason that Jesus gives him: ‘My grace, my sustaining grace, is sufficient for you, for my power is made perfect in weakness’ (2 Corinthians 12:9). Paul relents, and he says, ‘Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong’ (2 Corinthians 12:9–10).

It is not grace to bar what is not bliss nor flight from all distress. It’s the grace that orders our thorns in the flesh. . .  It’s the grace in the darkness that’s there to sustain.

There’s no question in our minds that we are in a dark place right now. There are so many puddles of sunshine that pop up here and there, but overall, it’s a dark time. And the reminder that we have this promise of “grace in the darkness that’s there to sustain,” was what we needed to get us through these next unpleasant surprises waiting for us.

We are holding onto that.

 

When My Spirit Faints Within Me

I haven’t slept well the past two nights. I have felt so much unsettling turmoil in my soul, that resting peacefully is hard. And this turmoil invades my dreams even when I do doze off.

I don’t even know exactly why. I have examined this and tried to figure it out.

My best guess is that it’s just the cumulative emotional ups and downs; concern for Lilyan’s and all of the other children’s welfare; constant necessary alertness and planning; continual required changes in our daily plans; and the fatigue that comes from all of these things — all with no let-up for well over two months now.

I feel like I reach deep down inside myself every morning and pull out any remaining scraps of anything that will enable me to get through each day and care for my family. And there are just so few scraps left now.

When I woke up this morning, I just stayed on my pillow, staring out through my window. I watched the trees blowing in the wind heralding an approaching storm, and as the thunder started to rumble in the distance and the sky gradually darkened, I felt all of my inner being do the same thing. That darkness just spread over me and through me, and it pressed so suffocatingly on my heart that I didn’t see how I could possibly get up and start my day.

Even before I did finally get up, I was fully aware of the need to stop reaching inside of myself (I already know how utterly futile this is!) and to look up to the Source of my strength instead. I prayed passionately as I stared out of the window.

“God, I don’t know how much longer all of this is going to drag on. I don’t know how to keep going. But I know that you know all, and that every second is somehow part of your good and perfect plan for Lilyan; for me; for Scott’s and my marriage; for each of our other children; even for Greg (our son-in-law and The Shepherd’s Crook Orphan Ministry’s Executive Assistant) who is keeping TSC going for us as we just try to survive day after day and guiltily leave him handling everything with the ministry. Please give me what I need to get up and do this day. Please fill me with the energy I need and JOY that I should be feeling for the honor of being the mother in this family and for walking a holy path laid out by you before the beginning of time.”

I’d like to say that I was suddenly infused with joy and strength and passion for this coming day’s work. But I wasn’t. I felt nothing.

But I did get up. And that was something.

I took a few minutes to do a little quiet time, and these words from Charles Spurgeon, and these verses from David’s heart in the Psalms did calm the turmoil just a bit:

“The Lord will perfect that which concerneth me.” Psalm 138:8

“If we indulge in any confidence which is not grounded on the Rock of ages, our confidence is worse than a dream, it will fall upon us, and cover us with its ruins, to our sorrow and confusion. The Psalmist was wise; he rested upon nothing short of the Lord’s work.”
~
Charles Spurgeon

When my spirit faints within me,
you know my way! Attend to my cry,
    for I am brought very low!
Psalm 142:3, 6

I stretch out my hands to you;
    my soul thirsts for you like a parched land.
Let me hear in the morning of your steadfast love,
for in you I trust.
Make me know the way I should go,
    for to you I lift up my soul.”
Psalm 143: 6, 8

Lilyan had her weekly surgery yesterday. The report was the same as every week. The wound does appear to be healing; still very far to go; still puzzled by her daily fevers, etc., etc., etc.

Again I say, we are very thankful that healing is taking place, and that the infection is improving, but we tire of seeing our girl struggle through these fevers daily. We are weary of weekly surgeries. It breaks our hearts to see her losing muscle mass and strength (she is losing about a pound a week still, and we think much of that is muscle mass). Here is a picture of her trying to get through school earlier this week in spite of a 102.4º temperature. She was determined to finish her school work. She is amazing and strong and just presses on every single day.

Doing School With High Fever May 20, 2019

Lilyan’s neurologist joined the multiple teams navigating her journey this week, and we do feel like he has shed some light on the possible cause for her fevers. He showed us X-rays of Lilyan’s Chiari malformation (part of her spina bifida). He said that the areas of her brain being stretched by her Chiari could definitely affect her body’s ability to regulate temperature under times of stress. Everyone involved believes this sounds plausible, and it also explains why she has always run fever under times of emotional stress or during times of fear. This just happens to some kids who have neurological issues like hers.

The good news is that this means, if everyone is correct (and in our guts, we feel they are), her infection truly is responding, and there is nothing big to worry about. The bad news is that this could stretch out for many months before the body gets itself back to a place of healthy, stable temperatures, and we can’t do anything except stay the course day after day, treating her fevers and modifying our days as needed to get her through each one. And keeping her away from any potential illnesses, which means continuing to stay mostly cut off from the world. We are all very tired of this part.

It is also looking more and more unlikely that Lilyan’s wound will heal in time for her to do any swimming in her Make-a-Wish pool this summer, and this just breaks my heart. We have bought her a special deck umbrella that she can use to at least spend time out there with us in the shade when it isn’t too hot and humid, but this is certainly not the kind of summer we would’ve chosen.

I do feel a little better prepared for the day, and the hard days ahead. But I also feel very fragile. Like a wisp of wind would knock me back down. I will have to lean heavily on these words throughout the day, I’m sure.

We have much to be thankful for and God’s promises to carry us through anything ahead. My head knows this, and I will trust the Holy Spirit to, in His good time, bury this deep in my heart as well.

The Fight Continues

Written Monday, May 13, 2019:

I’m so sorry it’s been so long since we updated everyone. Lilyan continues to fight, and not much has changed. But we have been forced to add addressing our other kids’ medical needs back into the mix now. We knew we couldn’t leave them hanging forever, and we have fallen pretty far behind with some of their routine follow-up visits with specialists. We have also had a few new issues arise for a couple of them, and we are trying to take care of getting to the bottom of those things. This has made it much harder to find time to get updates written (or to do much of anything else, either).

No matter how hard I try, I have not managed to get back on top of regular meal prep and other aspects of normal life, and each time I think I have a day to try a little harder at this, Lilyan will experience some kind of set-back that requires us to scrap our plans for the day and move back into survival mode. And we’re reminded, once again, that life is very much not normal right now.

Each time this happens, I find myself wrestling with feelings of defeat. I have had to accept the fact that I need to set much smaller goals for myself and the family each day, and we have tried to all settle more into a mindset of very long-term uncertainty. This is a season, just like many of the seasons that comprise our lives. Some seasons are good; some are bad. Many are hard; some are harder than others. We’ve had hard seasons before, and even though I don’t think this is necessarily the hardest we’ve ever been through, it feels really, really hard. I think some of that is due to the feeling that there is no end in sight and still so many answered questions.

Lilyan’s most recent surgery was on Thursday of last week (May 9). Both her plastic surgeon and her orthopedic surgeon were in the OR this time. They both talked to us afterward and felt encouraged with the healing they see taking place. They stressed, again, that we still have a long way to go (our next four surgeries are already scheduled), but that they do see healing taking place. The big concern is still the fact that she is running these daily fevers in spite of the healing that seems to be taking place. They ordered a CT scan of her head, to check on her shunt again, and more blood cultures. Everyone just wants to continue making sure nothing is being overlooked. Neither of these showed any abnormalities, which is good, but still leaves us in the dark.

Blog Post for May 13, 2019 #2

Lilyan, still feeling the affects of anesthesia, but so happy to be heading home after her surgery on Thursday

Starting on Saturday, her daily fever pattern began to change in a way that is causing even more concern. She woke up with a fever of 102º that morning, and that, all by itself, was atypical. She usually runs her daily fever in the afternoon, and on the occasional day when it hits in the morning, it’s always later in the morning, after breakfast. It was also more resistant in responding to Motrin and Tylenol. But it did eventually come down and stay down all day, so we didn’t worry too much.

Then yesterday, Sunday (May 12), she once again had a fever when she woke up, but this one was more concerning as it was 103.4º. It’s been a long time since she ran one that high, and, again, it was a little harder to bring down. For weeks, we had been planning a day of partying for yesterday as we celebrated Mother’s Day, Kathryn’s fifteenth birthday, which was on May 9, and Robyn’s twenty-first birthday, which slipped by practically unnoticed while we were in the hospital back in April. We were all a little worried that we might have to cancel these plans, but the fever did eventually come down again. We decided to continue with our plans and reach out to Infectious Diseases the next morning.

It really was such a special day, and we are so thankful that we were able to pull it off. Here are a few pictures.

Blog Post for May 13, 2019 #4

Kathryn and I always celebrate her birthday and Mother’s Day together, and we always get a new picture with each other on that day. It was good to do something so normal.

Blog Post for May 13, 2019 #4

Robyn’s table (Lilyan’s sweet face)

Blog Post for May 13, 2019 #7

Kathryn’s table (she was so excited!)

This morning, she once again woke up with a fever. It never got as high as yesterday’s, but it was even more stubborn about coming down. We communicated with one of the Infectious Diseases doctors, and he remains concerned. He is wondering about the possibility of a “deep ‘loculated’ infection, meaning a collection of fluid; like an abscess.” He ordered an ultrasound of her back, and that is scheduled for tomorrow afternoon, but he explained that imaging will be a challenge because seeing things accurately will be really hard due to the hardware in her back. So the saga continues.

We all recognized that we were beginning to feel sudden and pretty intense discouragement today, and Scott and I decided we needed to do something to try to help reverse this. So we loaded the kids up and took them to Sharon Woods for a walk in the woods. We knew that there shouldn’t really be anyone there on a cloudy day like today and during a school/work day, so we felt pretty safe from germs.

We were right. The park was empty, and the fresh air and connection with nature were good for all souls. Even those with four legs.

Blog Post for May 13, 2019 #8

Once again, it felt so wonderful to do something that felt so close to normal

Blog Post for May 13, 2019 #9

Scott with granddaughter Jhannel

Blog Post for May 13, 2019 #10

Kathryn loved this

Blog Post for May 13, 2019 #11

Lilyan watching the water flow under the bridge

Blog Post for May 13, 2019 #12

Roslyn and Nolan

Blog Post for May 13, 2019 #13

Our dogs were so happy about this outing

I’ll try to update if we get any new information from Lilyan’s ultrasound tomorrow. As always, thank you so much for all prayers.

 

Did We Make the Wrong Choice?

Written Saturday, April 27, 2019:

Short update and some perspective and healthy reminders.

Lilyan continues to run fever each day, but mostly feels good in between those fevers. They stay between 101º and 102º and continue to come down with Motrin and Tylenol, so we aren’t overly concerned — just watchful. As I said in my last update, we feel like these constant fevers are an indication of how hard her body is fighting to beat this infection. She is very tired all the time, but mornings are typically better for her. Each day at about 2:00 pm, we see her really start to fade, and by bedtime, she can barely even hold her head up.

It’s hard to watch her go through this and twice over the past five weeks, both during some of our scariest moments with her, Scott and I questioned our decision to put her through this surgery. We knew that not doing it would’ve meant a short life for her, but we started to wonder if it might’ve been better to have given her a shorter life without all of this pain and all of these surgeries and hospital stays and really hard separations from her siblings. Without all of these powerful medications that carry, along with the hope of healing, the risks of life-changing side-effects and complications. Without all of this disruption to her normal life and regular routine, and the uncertainty that each day brings.

But as we talked through these things, Scott realized, and pointed out to me, that it wouldn’t just have been a shorter life for her. It would’ve been a shorter life that included exactly what she’s going through now — wound infections, in and out of the hospital, separations from her beloved siblings, pain, fear, surgeries, and medications over and over again. But instead of moving toward the hope of healing, we would all knowingly be moving toward the end of her life and watching her suffer from continually declining lung function and quality of life. That put things into perspective for sure.

So while Lilyan was outside in the sunshine today, waiting for her Motrin to start bringing her fever down as her doting sisters walked her around the neighborhood in her hospital-issued wheelchair (her old one no longer fits her re-formed trunk), I spent a little time going back through photos taken of Lilyan since her homecoming in June, 2014.

I wish so much that we had thought to deliberately get before and after pictures, but even these that I found are pretty shocking to us and remind us that, once we get through this hard season, it’s going to be so worth it for our girl! Her chest no longer rests on the floor when she sits, and this is one of the major changes that will save her life now.

Front views before surgery:

Lilyan Sitting - Before Surgery #10

Lilyan Sitting - Before Surgery #12

Front views after surgery:

Lilyan Sitting - After Surgery #3

Lilyan Sitting - After Surgery #2

Side views before surgery:

Lilyan Sitting Before Surgery #5

Lilyan Sitting - Before Surgery #11

Side view after surgery:

Lilyan Sitting After Surgery #1

So, no matter how much harder it might get from here, we once again feel confident that we did not make the wrong choice for our girl. And we are so thankful to be so close to a hospital with such gifted doctors who still feel it’s worth the hard stuff, and even the risks, to give our daughter this chance at a better life. There are other hospitals around the country that have decided it’s too risky to continue attempting these surgeries for children like Lilyan.

Here are a couple of fun shots of the kids playing outside together in between the rainy days we seem to have so many of right now. We are continually saying aloud to each other just how thankful we are to be at home at this moment even though the battle for health and healing rages on.

Playing Outside 4/27/19 #1

Terrible lighting, but these two were so excited to go outside together

Playing Outside 4/27/19 #2

Blowing bubbles

Playing Outside 4/27/19 #3

Bubbles . . .

Playing Outside 4/27/19 #4

. . . bubbles (Jaden) . . .

Playing Outside 4/27/19 #5

. . . and more bubbles (Owen)

Playing Outside 4/27/19 #6

Look closely. I almost can’t stand how cute this picture is! (Oh, and Caelyn is pretty cute, too.)

 

Our Weary Heads Upon His Bosom

Written Thursday, April 25, 2019:

“We do not expect to travel through this wilderness exempt from its thorns and briers; but it is well when we feel Jesus is with us, and we can lean upon His arm, and often repose our weary heads upon His loving bosom, while He speaks to us and says, ‘Take courage! It is I. Don’t be afraid.'” ~ Mary Winslow (1774-1854)

So sorry I left everyone hanging again. Today turned out to be unexpectedly packed. We have quite a bit of good news but also some hard news from today’s surgery.

The good news first: Lilyan’s back continues to heal, and they let us come home after surgery this morning! Oh man! That was wonderful! In fact, they are planning to try doing surgical wound cleanings about twice a week now, but as an outpatient each time. As long as things continue to go well. Her surgeon commented that her tissue is gradually healing – at a pretty great rate, in fact – and, again, we are thankful for the good nutrition she has been getting through her Juice Plus capsules and the Juice Plus protein shakes. Protein has been proven to speed up the healing process, and these shakes make it easy for us to keep that going in healthy quantities, even though we aren’t able to put healthy meals together very often right now.

The bad news: There is still lots and lots of healing to go, and we’re still facing such challenges as we try to stay on top of the infection. Some of the bone at the site of the graft didn’t look great, so our surgeon took a piece of that for culturing, and it still showed quite a bit of yeast. It’s so, so hard to stay ahead of that yeast, and apparently, the E. coli is very aggressive, too. She said we are looking at “weeks,” of surgeries, and possibly even “months.” We can’t let ourselves go there, yet. We are being forced to live very much in the moment every minute of every day.

We have also realized in talking with our doctors that we have to continue in our long-term state of being mostly in quarantine. This has been very hard to accept after so many months of this. Lilyan’s body is just fighting so, so hard and is so compromised by all that’s going on inside of it, that we can’t risk exposing her to anything else that would require it to work any harder. She continues to run a fever about once a day, which shows us how hard her body is fighting. She has to be kept as healthy as possible for all of these surgeries and the required anesthesia, so we will be confined mostly to home except for appointments that we absolutely have to keep. Some of kids are pretty far overdue for some of their routine follow-ups with specialists, and we can’t postpone those any longer.

A number of other big things have been going on here that not many people know about.

Our son Colin, who was born at 26 weeks gestation (lost his vision due to retinopathy of prematurity) and adopted from Bolivia in 2000, seems to be having some fairly significant seizure activity. I would’ve said, before all of this, that he has never had seizures, but we are now thinking that it’s possible these have been going on for quite awhile as we look back and put some pieces in place. But during these many weeks of Lilyan’s hospitalization, things seem to have gotten worse and he has had some pretty concerning episodes here at the house, witnessed by the kids. He has no memory of any of them. The longest lasted about five minutes and happened right in the middle of a conversation he was having with a couple of his siblings. Once the episode ended, he picked up the conversation where he had left off, as if nothing had ever happened and had no memory of anything except the conversation. We have contacted our neurologist, but can’t get Colin in until May 16, and even scheduling anything right now is really hard because of Lilyan’s unpredictable surgery schedule. He seems stable for now and we are watching him very closely, but please pray that he will remain stable until we can get some answers.

Kathryn has been so healthy since her very serious problems all through late 2016 and most of 2017. But she had a pretty serious urinary tract infection while we were in ICU with Lilyan. With our daughter Kristie’s help, we were able to get that confirmed and treated, but she is having some problems again. We were able to get home from Lilyan’s surgery today early enough to get confirmation that Kathryn does not have another infection, but it seems that the Botox they injected into her bladder back in 2017 has worn off and will have to be repeated. This is a procedure that can be done as an outpatient, but does require a trip to the OR under anesthesia. We have testing and a clinic appointment scheduled over the next couple of weeks to start getting pieces in place for that as soon as possible.

We have had some regression with some challenging behaviors with one daughter in particular who is still working through the hard stuff that our kids come home with. This isn’t a surprise. In fact, the surprise is that she managed to hold things together as well as she has in the midst of these really, really hard past five weeks. Please pray for her heart. She is trying. Pray for us. We need wisdom and patience — both hard to find when we are so very tired and “used up.”

Lastly, our beloved dog Godfrey has caused us some worry. He is an older dog who is at least eleven or twelve years old, and he seemed to be showing some signs of possible congestive heart failure. These symptoms kind of came and went, and we couldn’t do anything about them because we were trapped at the hospital. Again, because we got home so early today, we were able to contact our vet and get him in for a check-up. We were very relieved to hear that his heart and lungs sound good. He did some blood work to test a few other things that might explain the symptoms we are seeing. But he also felt that it’s possible this is just Godfrey’s way of reacting to the anxiety caused by our coming and going. He is very attached to the two of us, but especially to me, and he hates it if I’m gone for any length of time. We knew he was an old dog when he came into our lives two-and-a-half years ago, and we knew that we might not have him for a long time. But in this place of such fatigue and heightened emotions, I just felt like I couldn’t bear losing this dog-love of mine right now. We are thankful that things seem to be stable for now. God cares even about these kinds of heart-pains.

We clearly know that we have so, so much to be thankful for. Most obvious is the fact that we didn’t have to plan a funeral for our little princess, Lilyan. Tears still come easily as we remember how close we came to losing her. We also know that she could be much sicker than she is, and we are so grateful to see her slowly healing and to be spending more time at home now. But honestly, parts of these past few weeks (months, actually) have been very, very hard. We really are so very tired.

But we truly have felt God’s presence by our sides through so much of the hard stuff. And we have experienced that rest that can only come from leaning upon His arm, and reposing our weary heads upon His loving bosom, hearing Him say to our hearts, “Take courage!” This is something that is impossible to explain, but it has kept us going when we thought we couldn’t take another step.

We have also been so blessed through so many of you. I’m so sorry I have not managed to answer your comments on my blog posts and Facebook posts, as I have longed to do. I haven’t even thanked most of you who have sent money to help offset some of the expenses for Scott’s and my food at the hospital, gift cards, meals, and money for feeding the kids at home, and cards and gifts that made Lilyan feel special. We are so very grateful.

The only picture I have tonight is of home.

I love this home of ours, and as we drove away this morning to take Lilyan back to the hospital, I looked back at it through the car windows, streaked with the dreary rain, and it just looked like such a beautiful haven to me. So this isn’t a good picture, but I love this house. I’m so glad to be here tonight where I spent the evening surrounded by my kids and dogs, and where I’m about to climb into my own bed.

Goodnight all! From our home to yours.

Back to the Hospital 4/25/19

 

It’s Today

Written Tuesday, April 23, 2019:

Winnie the Pooh: Christopher Robin, what day is it?
Christopher Robin: It’s today.
Winnie the Pooh: Oh, my favorite day. Yesterday, when it was tomorrow, it was too much day for me.

So although it didn’t go exactly like we had hoped, we did get home for part of Easter weekend. The very beginning was super bumpy, and we were way, way too tired to cope with it well. It went like this:

We didn’t manage to finally arrive home Friday until about 6:30 that evening, and within about fifteen minutes, Lilyan was running fever again. We came through the door, kissed the tops of all our little ones’ heads, said quick hellos to the older ones, tried to assess Lilyan’s condition,  and then our home nurse was at the door for our final PICC line refresher course.

The fever continued to climb a bit, and at that point, our fatigue was so great that we just couldn’t bear the thought of having to take her back in to the hospital again immediately.

The good news was that we had a nurse in the house so they allowed her to just assess things there and determine that Lilyan’s back wound and her PICC line were both fine.

The bad news is that all of this took hours, and this very kind and patient nurse didn’t leave our house until close to 9:30. So we never really even got to talk to our kids at all that night, and we were up until close to 1:00 am getting Lilyan all settled and completing her final antibiotic dose, which had to be done through her PICC line.

In the middle of the disappointment that we had completely lost our first evening as a family, and the mental and emotional fog resulting from our fatigue, the world felt very black and the future looked really hopeless. I remember my weary, cloudy brain processing on some level that I shouldn’t pay too much attention to those feelings under the circumstances, but when we finally fell into bed and drifted off to sleep, I didn’t see how I could muster the energy to do one more day. And especially not with an upbeat attitude for our watching weary and needy kids.

But that was Friday. Lilyan’s fever went down that night and stayed down all through Saturday.

And Saturday was a wonderful day filled with healing and laughing and hugs and connection and fun.

I’ll wait and let the pictures below tell that story more fully in a minute, but we ended that night with pizza and a movie – “Christopher Robin,” starring Ewan McGregor. At one point near the end of the movie, Winnie the Pooh and Christopher Robin have a little conversation. That’s where my opening quote is from. And it struck me, during those lines of the movie, that this was exactly how I had felt on Friday — before Saturday had become today. It was just too much for me, but I had no idea what a wonderful day was waiting for us once Saturday became today.

And then I thought about Jesus’s disciples as they moved through that sad weekend after their dear friend — their Lord — had been so brutally killed. The future was just too much to even think about because they didn’t understand how the whole world was about to change when Sunday came. And it all seemed, somehow, so poignant to me in that moment. In front of our TV. Surrounded by my precious, precious family. Listening to Winnie the Pooh speak words of wisdom.

Sunday was also a wonderful day. Well . . . initially anyway.

There was no way for me to pull together our typical Easter dinner this year, so, after a warm and intimate Easter worship service in our family room, we chose to use a generous and unexpected gift from dear friends to order Chinese to be delivered to our door.  It’s probably not an Easter dinner we’ll ever forget.

Sadly, as we were eating our dinner, Lilyan complained of a headache and just generally not feeling well. We checked her temperature, which was 103º, quickly repacked our only-partially-unpacked bags, and headed to the Emergency Department at Children’s. We were still very, very tired, and definitely disappointed that our time together had been cut short. But we were also feeling refreshed in spite of still being tired, and the main thing we all kept feeling was thankful. We were all so grateful that we had been able to have those very special times together before having to head back to what is beginning to feel like a home away from home.

After sitting in an exam room in the ER for four and a half hours, they finally admitted us, and there were some familiar faces waiting to greet us on A-3 North.

Once again, Lilyan’s fever came down with Motrin and Tylenol, and stayed down all night. She had surgery the next morning (Monday, April 22). Although everyone expected, after Sunday’s high fever, for things to look a bit yucky inside her back again, it looked surprisingly good. Not good enough to close the wound, but also not bad enough to explain the high fever.

There have been a couple more fevers since then, lots and lots (and LOTS!) of back and forth discussions between the teams caring for her, but the bottom line is this

  • All players involved in her care are completely perplexed about these random bouts of fever, but they have checked and re-checked everything they know to check for now.
  • Everyone is a bit nervous about the fevers because of how critical it is to protect the hardware in her back, but agree that she is healthy and normal in between the bouts of fever and that her back looks relatively good at this point.
  • She is scheduled for another wound clean-out in the OR on Thursday.
  • Because they know that we will watch her closely, that the Liberty Children’s campus is only ten minutes from our house in case of an emergency, and that we will get her in immediately if she should ever have a fever that doesn’t come down with the combination of Tylenol and Motrin, they have agreed to let us go back home and monitor things from there. We should be leaving sometime this afternoon.
  • We will come back on Thursday for surgery, more bloodwork, and close reassessment of everything.

We will try to post an update after surgery on Thursday. For now, though, the (many) pictures and captions below paint a much better picture of how great our day-and-a-half was at home for Easter weekend.

Lilyan Home for Easter Weekend #1

An exhausted and feverish Lilyan patiently waiting while our kind home nurse cared for her PICC line Friday night when what we all really wanted was to just spend time together.

Lilyan Home for Easter Weekend #2

Saturday morning dawned with new hope and energy, and we all enjoyed some egg decorating, using a whole new method that involves Cool Whip and food coloring.

Lilyan Home for Easter Weekend #3

Kathryn was so, so happy to have the whole family together again for awhile

Lilyan Home for Easter Weekend #4

Granddaughter Jhannel thought this new way of doing eggs was so great because it’s also tasty

Lilyan Home for Easter Weekend #5

Lots of cute pictures of all of the kids, but I’ll limit it to these few. I thought this one of Nolan was super cute

Lilyan Home for Easter Weekend #6

Success!

Lilyan Home for Easter Weekend #7

Our Saturday evening viewing of “Christopher Robin.”

Lilyan Home for Easter Weekend #8

After the younger ones were in bed Saturday night, the older ones helped fill the eggs for hiding the next day, and . . .

Lilyan Home for Easter Weekend #9

. . . helped us fill baskets for morning

Lilyan Home for Easter Weekend #10

Once ALL of the kids were in bed, Scott and I got the table ready for morning. This included boxes of very special chocolate for our awesome older kids, along with the baskets for the eight youngest

Lilyan Home for Easter Weekend #11

Sunday morning, and here they come!

Lilyan Home for Easter Weekend #12

Lilyan was so, so happy to be home for this!

Lilyan Home for Easter Weekend #14

After our home worship service, Lilyan got a good hair-washing, followed by some sister-love from sisters who have missed her so much.

Lilyan Home for Easter Weekend #15

Then it was time for an indoor egg hunt since it was so muddy outside. We learned, from a friend, of this great idea for children in wheelchairs. Helium balloons tied to eggs make it possible for kids in wheelchairs to grab the balloon strings and get their own eggs. Owen and Jaden opted to crawl through the house looking for harder-to-find eggs, but this was great for Kathryn and Lilyan.

Lilyan Home for Easter Weekend #16

Pure chaos reined for awhile as they all hunted for eggs, some of which had been hidden in some pretty creative places by our older kids.

 

Those sneaky sibs even used tape sometimes!

Lilyan Home for Easter Weekend #16

More “hidden” eggs with balloons

Lilyan Home for Easter Weekend #17

Jhannel had so much fun

Lilyan Home for Easter Weekend #18

Kathryn was so proud of herself when she grabbed her first balloon/egg.

Lilyan Home for Easter Weekend #21

Those guys even hid one inside a balloon!

Lilyan Home for Easter Weekend #22

Nolan found one behind a photo

Lilyan Home for Easter Weekend #23

Carlin helped Lilyan find her last two

Lilyan Home for Easter Weekend #24

All of the balloons gathered on the ceiling after the hunt was done

Lilyan Home for Easter Weekend #25

Our non-traditional Easter dinner, served on disposable plates

Lilyan Home for Easter Weekend #26

Oh no! Fever! Back to the hospital.

Lilyan Home for Easter Weekend #27

Four-and-a-half-hour wait in the ER before finally getting a bed on her normal floor

 

 

 

Amazing Surprise Gift

Sometimes God sends us little unexpected gifts out of nowhere. He did that this afternoon.

All of our doctors talked together and decided that we can take Lilyan home for a little break this weekend! Even though she ran her typical 36-48 hour post-op pop-up fever at midnight last night. It’s a big deal to make this all happen because of her PICC line and her wound VAC, but everyone here knocked themselves out getting home supplies lined up insurance approval for everything. They really wanted Lilyan’s family all together for Easter. So sweet!

There are some stipulations:

  • We have to back in on Monday for another surgery.
  • We had to agree to get her straight to the ER for blood cultures if she runs any fever at all over the weekend because.
  • Each team took turns stopping by to tell us, over and over again, just how precarious her whole situation is, how things could turn dangerous very quickly, and stressing all of the things we need to watch for.

But we feel like we have developed a much better understanding of what we are dealing with now as we’ve walked through these last two weeks.

So after we get our PICC line refresher course late this afternoon (it’s been  few years since we went home with a PICC line in place), we will head home and meet another PICC nurse at our house so we can prove to her that we know what we’re doing.

It’s not much time together, but Lilyan will be able to dye eggs with her siblings tomorrow, do another little party tomorrow night (because having a party is always a good idea!) and we can all spend Easter together. We are indescribably grateful for this little break in the middle of this ongoing drama.

We don’t know anything past surgery on Monday. We’ll have to wait until we hear what they see during surgery that day before we know where plans go from there. We will return with packed bags, prepared for another stay here, and keep taking things one step at a time.

The kids have a meal coming to them Monday night, and some of you have asked if we need more. We will let you know as soon as we hear the plan after surgery that day. Thank you, thank you for even asking! Our hearts are full.

One new item for prayer. Scott has pulled a muscle in his back during all of the lifting of Lilyan over the past month. We need Dad in top-notch condition because this isn’t over yet, so please pray that some TLC at home this weekend, where we have older kids to help out, will provide healing time for his back.

Happy Easter to you all! It’s a beautiful weekend for the surprise of being able to celebrate together the most beautiful gift ever given to the children of God.

“No scene in sacred history ever gladdens the soul like Calvary’s tragedy. Light springs from the midday-midnight of Golgotha, and every herb of the field blooms sweetly beneath the shadow of the once accursed tree. In that place of thirst, grace hath dug a fountain which ever gusheth with waters pure as crystal, each drop capable of alleviating the woes of mankind. Thus Calvary yields us comfort rare and rich.

We never should have known Christ’s love in all its heights and depths if He had not died; nor could we guess the Father’s deep affection if He had not given His Son to die. The common mercies we enjoy all sing of love, just as the sea-shell, when we put it to our ears, whispers of the deep sea whence it came; but if we desire to hear the ocean itself, we must not look at every-day blessings, but at the transactions of the crucifixion.

He who would know love, let him retire to Calvary and see the Man of sorrows die.
~
Charles Spurgeon

“And when they had come to the place called Calvary, there they crucified Him.” Luke 23:33

All Done - Let's Go Home for a Break 4/19/19

Just finished her little sewing project, so let’s take a short break and go home!