Fantastic Friday

(by Joan)

One hundred thirty-five days ago, life drastically changed for our family of six when we were given the recommendation by our state to shelter in place. Three of our household members are considered high risk – they would not fare so well if COVID would enter our home. Because of this, we have chosen to protect our vulnerable by remaining in the “red zone” even though the world around us has opened. We take little risk and have so far avoided this pesky creature. So I have taken it upon myself to make life somewhat “livable” by coming up with an adventure for all of us to do on Fantastic Fridays – something to get us out of the house and yet be a “low-Covid activity.”

To find activities that attract two 87 yr olds, a severely disabled young lady, and a hyperactive seven-year-old is a real task. Since these brief trips add up to our only summer vacation, I have worked hard to plan them. Our last one was July 3rd. I found a five-senses paved nature trail in which Ron and I could push Grandma and Kari in wheelchairs up and down hills – one that was also a great hike for Matthew and Grandpa. It worked, but it was our last outing. That night, Grandma had a heart attack and we sent her off in the ambulance. We spent July 4th hoping and praying we would see her again. Praise God we did. She pulled through but remains weak. It has ended our Fantastic Friday summer outings for the six of us. But this afternoon mom was stable, so while the Grandparents napped, we slipped the kids out for a brief break at a nearby park.

I was reminded on this day, not only how fantastic Fridays can be, but how all life can be if we look through the right lens. Most days my Matthew drains me. He is so busy, so unable to entertain himself, so dangerous on his own, and so hyper that sleep is not his thing. Because we do not want him interacting with others and potentially bring COVID in the house, for 135 days he is all ours with no breaks. But today at the park, he was determined to climb a ladder to the 3rd level of the playground equipment so he could go down the big, long slide. This is the child that has minimal use of his right arm, a weak right leg, no vision on his right side, and little coordination. But today was the day he was determined to overcome all that. With his dad protectively behind him, I witnessed an amazing feat. He did it alone, not just once, but twice. And, of course, the ride down was his reward. In 7 1/2 years, never has he worked harder to overcome. It was his choice, his determination and I got to witness it.

As I watched, the memory of my first meeting Matthew flashed vividly before me. He was 4 months old, in the ICU at CHOP. I was overcome with sheer joy at the immense privilege I had that day of taking this very banged up boy home with me. He was beautiful despite his severe injuries. As the ICU nurses scurried around, going over and over all the medical care that I needed to understand before he could be discharged, I remember just smiling because none of those tasks were frightening to me (I once was an ICU nurse). The emotion that was so powerfully overcoming me was extreme honor that “I get to care for this child!” And seven years later, I know why God had me feel such exhilarating emotions – He knew I would need to be reminded of those thoughts in the midst of how hard these seven plus years would be.

Caring for a special-needs child is not for the faint of heart. And as I mentioned before, there is another dimension, a topic prevalent in our society now. Being a white mom raising a black child means I need to step up to the plate even more to help him overcome this world. We have had several incidents where I’ve seen my son prejudged because of the color of his skin. It hurts and I want to shrivel up and hide him away. But that is not the answer. At a reunion, we were told he certainly was not related. He was my son, so I went outside with him, crying, angry and shocked that in the 21 century this kind of prejudice still exists in our nation. At another family event, two boys ganged up on Matthew because, as one of them said, “I hit him because he is a darky.” Angered and incredibly hurt I took my son from that place determined to never, ever, go back. But the kind of determination my son exhibited today – the kind great enough to overcome the great evil that has damaged him over seven years ago must be the same determination I need to have.

God may have designed our family for a special purpose – I am still trying to come to grips with what that means. In any case, I do want our family to testify to a living God who is all about overcoming peculiar, remarkable ways. We have been issued a unique platform, to proclaim that in our incredible weakness, God is fighting to be strong for us and His power is made perfect in weakness. Every day I get the privilege of being Matthew’s and Kari’s mom. I get to be the caretaker of my parents, I get to pour myself into the lives of those who appear very weak, but who have the strength of a team of oxen because Christ is in them. What a Fantastic Friday!

Cautious / Driven by Love

For our family, this is day 90 of our version of shelter-in-place. Don’t want you to feel too badly for us. We just got back from Freeze and Frizz where we could meet up with some family while socially distancing in the breeze. We aren’t in prison, like many members of nursing homes.

As to Covid-19 and whether we’re doing the right thing: With only 90 days under our belt it is far too early to draw hard conclusions. I recall the LBC history prof who is hesitant to talk much about the Civil War – it happened too recently. He prefers to teach on things that are more settled, that have happened three or four hundred years ago. Haha.

It is too soon to know how the present period will be viewed. Are we being too cautious, or will there be a second wave? From personal experience, I know it is all too easy to make judgements about how others should respond to the “bad bug” (as Matthew calls it). One assumption is to believe that people like us (who shelter in place) are driven by fear. To suggest that fear is a fact is, at least in part, correct.

What we fear most is one or both of us (Joan and I) being so sick that we are unable to care for those in our household (whether they are sick or not). That would be tough. In six years of caring for our charges we have had two days in which both of us were “down for the count.” Those were really, very- terrible-no-good days for sure. But they have been rare (greater than 99.9% of our days have not been like that – and we are grateful).

Another fear is experiencing a tsunami wave of loss. There are three members of our household who are in the very high-risk category (combinations of age, disability, and serious underlying conditions). Even without being infected by Covid (we had her tested), Kari has experienced a life-threatening illness during this time (undiagnosed, something we’ve been dealing with for the last 60 days). Though this has been very hard, for the last three days she seems to be doing better and we are hopeful.

Greater than fear is that we are driven by love. Our job is to care for the four people God has entrusted to our care. Because our livelihood is our life and because we can shelter-in-place, that’s what we’ve chosen – at least for now – something we evaluate every week.

Speaking of love – yesterday we celebrated 36 years of marriage. As my brother-in-law said the other day: “I got the better deal!”

Ron

Caring for Others When You Have Significant Needs Yourselves

Joan and I had no idea how relevant the above topic might be when RHMA wrote and asked if we would be willing to give a seminar at their Lancaster Conference this coming October. Then, when Covid-19 hit, we offered to do a “practice presentation” by video to the missionaries of RHMA when their April Conference in IL was cancelled.

As it turned out, we “practiced” in more ways than one. While seeking to serve the missionaries of RHMA, the level of need in our home increased. In the midst of putting our video seminar together, at the beginning of April, Kari began to have fever. And then there were the seizures. By the week after Easter her seizures were so severe that we were not sure we could stop them. We almost lost her, as many of you know.

Kari is still not over the virus, if that is what it is (probably not Covid, but we do not know for sure). She is still having some fever and seizures. And our concern for her wears us down, but she and the others in our home still need us to stay energized, and so we persevere.

No one has exactly the same experience as another in this crisis, but we know we are not the only ones who have to keep serving while doing such things as: keeping the kids entertained and educated, struggling to figure out how to get stuff the family needs and keeping the personal economy going.

In our presentation to others we talked about enduring hardships, having persevering hope and laboring out of love and maintaining faith. Yes, turned out we were reviewing the very truths we needed to hear (and still need to hear).  

We were able to complete the video. You’re welcome to watch it if you like. If it appears that we look tired by the end of the video it is because we were very tired!

By the way, while heroes in our country are being saluted and cheered, I want to offer a Happy Mother’s Day to all of you who are moms. You are the ones who routinely “care for others, even when you have significant needs yourselves.” You are always high on the list of “essential workers!”

“Caring for others…” seminar to RHMA Missionaries – May 4, 2020

Our Zoo

Do you feel like your home is a zoo right now? I sure do! Which made me think about Noah’s wife who (not original with me) lived in a zoo for a year! Talk about “sheltering in place!” She couldn’t even go outside for a walk when life got too intense inside those boat walls. So, I’ll have to meditate a bit on this dear lady’s life (whose name we don’t know). How exactly did she do it? I suppose the same way we are doing it – by the grace of God, one day at a time.

The other day we “celebrated” our fortieth day of Covid-19 raining all around us. So far, we are staying “dry.” But how much longer until it is safe for our high-risk family to land on the mountain, open the door and breathe fresh, safe air? Might it really be as much as a year!!!

My own zoo became quite chaotic this weekend. You know the story of Kari’s out of control seizure episode and her making it through that storm. A new medication was started since and, so far, seizures are staying at a minimum.

Because Kari was taking front stage, we hadn’t reported on our little guy. On Saturday, just before Kari’s electrical storms intensified, Matthew also started with seizures – four that morning. It took us by surprise; It’s not been characteristic of his epilepsy. To reign things in, we increased the dose of his medication, which set off a whole round of side effects that are almost intolerable for him to live with, creating some zoo-like behavior. These days are rather rough. As difficult as it is for Ron and me to handle him, we keep in the forefront of our mind that he is the one who must live with the awful feelings. And he will have to endure it for at least until the beginning of next week – the neurologist doesn’t want to change anything for that long. 

“Yep,” pretty sure Noah’s wife wanted to pound on that ark door, screaming, “Let me out of here!” Maybe that’s why God shut the door – his way of letting her know that, yes, this is his plan. And the same grace he gave her, he will give to me and you – if we only ask. 

A weak vessel

So I can’t thank you enough for your prayers through the night. Kari has a treasure in her “jar of clay” body. And that treasure is an amazing strength she has from the Lord.

Ron and I went against medical advice yesterday. The neurologist-on-call yelled at me to call 911 and get her to the hospital to be intubated and put in an induced coma to stop her seizing. Of course, because of Covid they were giving me an absolute that I would NOT allowed to be with her in the hospital. While them doctor was calling the hospital to tell them Kari was on her way, I was administering emergency medicine here at home to stop it. I had to give more than I have ever given – it required the full dose til the seizing stopped and knocked her out. At that point, the biggest threat is to her breathing, but I could NOT let Kari go alone to the hospital. Even typing those words causes me to break down. Last night was very rough. I was a human ventilator for her. Shaking her, rubbing her back intently ever time she stopped breathing. And every time – as dusky and near death as she was – she always fought back! Please read II Cor 4: 8 to understand that curse she was under…. But that Treasure inside her once again pulled her through.

It must have been an angel of God that would slap me awake each time she stopped breathing and this by your prayers through the night penetrating the heart of God and moving His hand.

I don’t know how long I will have Kari. Last night as I battled for her life, I was reminded of another mother who cried out on behalf of her 33 yr old adult child – I felt that grief of Mary the mother of Christ. It doesn’t seem fair for Kari to have to experience this much suffering. I don’t think it fair, but I count it a privilege to know her and to know that God is doing (in the heavenlies especially) something precious regarding her life. Although the night was rough, I was confident I had made the right decision to keep her home – even if she died in my arms. I had peace. But this morning the heaviness returned when I realize that I may have burned a bridge, not sure I have a medical person to go to if I need more help for Kari.

My phone rang, I almost didn’t answer it because it was a strange number. It was Kari’s neurologist who is on a two week leave for religious purposes. Apparently the other neurologist had called him last night to report that I had not followed through on her advice and she had no idea what was happening. He called me to tell me that I absolutely did the RIGHT thing and he took all the blame for what I had to go through yesterday and took responsibility for not getting Kari’s seizures under control over the past 3 weeks. He was almost crying over what he had put Kari and me through and wanted to reassure me of his concern even though he is on vacation. He wants a daily report. He has already prescribed a new med – he had to go to bat for to get special approval. He told me, it meant everything to him that I listened to my heart and made the choice that I did.

My heaviness is gone. Many of your expressed support of our decision, yet it was really hard for me to go against that medical authority yesterday and feel like I was on my own. I know, I never am. God’s got my back, no matter what happens! Now this “jar of clay,” more like crumbly mud with the amount of crying I have been doing, needs to figure out how to get a long nap!!

Kari is better this morning!

Thank you for the prayers!

It was a long night for Joan who was at Kari’s side and tuned in, making sure she kept breathing, waking her if her oxygen level dropped too much, repositioning as needed, etc.

We aren’t seeing any seizures this morning! And she still has a low grade fever, but not as high as it had been.

So glad we made the decision we did. Maybe not completely out of the woods, but we believe we are farther ahead than if she had been hospitalized, put in a medical coma, etc.

Pray for Kari (and for us)

Kari’s seizures went out of control today, after being worse than average the last couple weeks. We gave her a rescue med – so far so good but we won’t know for sure until it wears off completely. Will the seizures return? She also has a low grade fever and has for nearly two weeks.

On-call neurology, after hearing our story earlier (before we gave her the rescue med), told us to get her to the hospital via ambulance and they will give her on the heavy duty stuff and put her on a vent. We understand the protocol. Of course they won’t let Joan come with her, which is not acceptable. Joan isn’t just a family member at a bedside for comfort, as important as that is… Joan is an essential medical resource for Kari who is nonverbal.

Because you might naturally wonder, Kari is not having respiratory issues and no one else in the house is showing any signs of Covid-19 and we’ve been extremely careful for these last 37 days. For these reasons we believe that it is very unlikely.

A “Social Distancing” Story

Joan sits by the bed of our daughter. A few weeks earlier Kari had major surgery on her spine. We were warned that she would be in the OR for a long time (as much as twelve hours), but the silver lining was that we could expect a very brief recovery period. It would be nothing like her hip surgery recovery – weeks of painful therapy.

At first things went as expected. The rod was placed in her back, relieving her of the growing pain from her body being twisted. Within a few days we were home and Kari had “grown” 2” taller! But then, with horror, we noticed that her incision site had begun to ooze – all because of a tiny bug that somehow found its way past all the handwashing precautions and sterilizing protocol of the operating room. And so, we are back at duPont Children’s Hospital in Wilmington, De.

More surgeries are needed to clean out the infection. Kari is in an isolation room. Joan experiences the social separation with her.

The bug is hard to beat. Even once identified, it takes several rounds of antibiotics to eliminate it from her body. She would be in duPont for six months!

Our son Jeremy was three at the time. He too experienced “social distancing” of sorts. While I was busy in ministry at Red Hill, visiting Joan and Kari as much as I could, Jeremy was bounced around between friends and grandparents. He celebrated his fourth birthday at the Ronald McDonald House across the street from the hospital.

What good could come of this? Why did God allow this infection that would cause such a great disruption to our lives for so many months? Wouldn’t it have been better if we could have continued to serve in ministry as a whole family back in Red Hill? 22 years have passed, and we don’t fully know the answer to that.

We are thankful for one blessing that came out of that experience. Joan went from being super busy in caring for her children and in ministry to suddenly having time on her hands. Months before she had prayed for a “little” extra time – to do some writing. She suddenly had “lots” of time to write. Out of that came “Joy in a Foreign Land.” One friend suggested that, as she wrote out of pain and with great vulnerability, the words “bled” (rather than were written) onto the pages of her book. Thousands around the world have read that book.

Fast forward to today. We are once again in isolation. This is day 28 for us. Though things are different, it kind of feels the same. This time the bug is out there instead of inside of Kari – and we’re desperately trying to keep it that way. Last time we had a son who longed for time with us. This time we have a son (seven years old) who wants to be just about anywhere but here with us – he misses school and church and friends. I think he even misses his Schreiber therapy appointments! Like last time, there is no end in sight. Instead of a room on the 3rd floor of duPont feeling like a prison cell, it is our own home in which we are confined. Even if the curve is flattened, with three members of our family in the high-risk category, we will have to keep up the protocol until this bug no longer threatens to invade. Even with all our precautions, there is no guarantee that the bug won’t get through, just as one did during the surgery.

What good can come from this present disruption to our lives or to yours? It will take time to see it. But we know that all things work together for good for those who love God. We will understand it better by and by.

On Fixing Things

My son Matthew has an astounding ability to break toys. It’s what you do when you are a seven-year-old boy. I’ve started throwing these disabled items into a box that I’ve mentally labeled: “things I’m gonna fix when I get a round tuit.” Whether toys, tools or other trinkets, things get broken so easily. The world in general is broken and some things are hard to fix.

Before my fried Keith became a pastor, he was a copier repair man. While in training for the job he was shipped off to the Panasonic copier school. On the first day, various students asked the teacher how to fix a copier if it did this or that. The teacher ignored their questions and kept on teaching. Finally, he explained, “My job is to teach you how a copier works. If you understand that, then you will have the answers to all your questions.”

Several weeks ago, our oven stopped working. I was temped to rush off and get a new heating element from partsdirect.com but then thought that maybe what I needed was a new thermometer, so perhaps I should order both while I am at it. If I had, I would have wasted money ($70) and time (a few days for the parts and some time in installation). I would have been very frustrated because neither part would have fixed the stove. Instead, I watched a YouTube video that explained how my oven is supposed to work and which part does what. I compared that with the symptoms mine had and learned what I needed was a new control panel, which “only” costs $388. Time to get a new stove instead!

This “learning how the thing works before you try to fix it” principle has lots of applications. It’s what we had in mind when we wrote each of our books. In “Joy in a Foreign Land” we wanted people to know our story, but we also wanted to share how we survived. We do that by impacting truths about how a family is supposed to work. In “Faith in the Heartland,” Joan wanted to do more than write about fascinating experiences when our family lived on the road for five years in a “tin can.” What she really wanted to share are truths about walking by faith – things that might be helpful to anyone.

If you are part of a church, you no doubt know that churches can have problems. Ah, but how to fix them! Chances are that “increasing curb appeal” won’t turn around declining membership. “Better technology” probably won’t help increase love for one another or overcome division. Instead of jumping to someone’s idea of a “quick fix,” it is better to think through how God has designed a church to function. And that’s what I try to offer in my book, “Have We Lost Our Head?”

Whenever we find that something isn’t working well, before we try to fix it, let’s try to understand how it’s supposed to work – whether a toy, a tool, our family or our church. If made by man, look to the manual from the manufacturer, or watch a YouTube video put out there by an expert. If made by God, refer to his Word as the final schematic to understand his design.

Ron

Unprecedented Counting

In these novel days of coronavirus and stay-at-home orders, I find that I am counting much more than I used to. I count the daily rise in Covid-19 cases in our county. I am counting the hours spent in homeschooling Matthew every day. He counts in math class and counts the hours till he is finished with school. We count teddy bears in windows during our recess breaks. I count medications for the four people in our house on prescription medications. In doing so, I see when I need to make the next pharmacy run – one of few times we are allowed beyond our neighborhood. Every morning I count how many days we have been in this shelter-in place mode. This is day 18 for us! I count the number of families who daily walk past my window – normally we only see so many on holidays.  I am trying to count my calories to make sure they are not adding up too quickly during these slower paced days. I count how many more hours until Matthew will be ready to lay down to sleep – with no breaks, some days seem really long.  The thing I wish I was super busy counting is the abundance of on-line book sales from our recently published books. BUT…

This is when God reminds me that what He really wants me to count is my blessings. Despite this “bad bug” (Matthew term), we have so very much to be thankful for:

– Spring is here and the glorious days to be outside results in pretty sights of new life everywhere – like the turtle doves flocking on my front yard tree. They know nothing of social distancing.

– Easter is coming and we can still celebrate Christ’s resurrection from the grave even though we won’t be sitting on pews beside other believers or stuffing ourselves with ham with extended family.

– He is alive and is still offering salvation and eternal life to those who repent of their sin and acknowledge the need for His work in their lives.

– Food is still plentiful and I have a working oven (not true just prior to corona) and a roof over my head.

– I have an incredible family in my home – three generations who know how to keep each other laughing, stimulated, and full of life. We are not alone.

– The second coming of Christ is more real than ever as we experience the birth pangs leading to that event. Our world is unstable, but I am connected to the One who has overcome this world and that is a secure thing that I can count on.

So, the most productive thing I can do these days is to keep counting my blessings.

Joan