Matthew at CHOP – part 2

This is Matthew’s third day at CHOP. Things are starting to wear a little thin for him. Prior to today we weren’t sure we were ever going to talk him into leaving. He loves the “room service” where he can pick up the phone and order food. He loves “child life” with the toys they offer. And he absolutely loved the musician who came and played and sang for him. Having mom’s full, unending attention? – all this makes CHOP the best place ever.

But today… He starting showing some anxiety. “Mommy, I don’t know how to get home. I don’t know how to get there.” “It’s okay Matthew, Mommy knows the way home. I’ll get you there.” Sounds a little like a John 14 exchange, doesn’t it?

Falling flat on his face didn’t help. Having to have an IV started didn’t help, though he was a trooper and in the end he thanked the three young women who did the deed. But mostly he was exhausted – finally fell asleep after a seventeen hour stretch. Yes, he got up at 3 o’clock this morning! (Now that Matthew is sleeping, Joan is trying to do the same!)

As to the seizure this morning? No, the EEG didn’t pick it up. They’d like more time for observation and the hope of catching one (and they are hoping to provoke it by temporarily withholding his seizure med). The plan now is for Matthew and Joan to stay until Sunday. We had other options, but it likely meant returning to CHOP later for more of the same. We figure: We’ve come this far. Let’s try to get it done now.

Thanks for your prayers.

Matthew at CHOP

Nov 13, 10:00 AM – Matthew is at CHOP to find out if there is a specific part of his brain from which his seizures are coming. He is on a round-the-clock EEG.

This is the third day and up to this point he hasn’t had any seizures strong enough to be picked up on the EEG. Therefore they’ve decreased his anti-seizure medication – in order to provoke a seizure. Well, it appears to have worked. About half an hour ago he fell flat on his face, presumably because of a seizure. He was not injured but they now are limiting him to his bed. We don’t yet know if that seizure was strong enough to show up and provide helpful info.

Joan says, “it has been a circus this morning.” Related to the fall, “Everyone ran in the room b/c of course he is being videoed.” “They want to keep him until tomorrow.” “Trying to get Matthew to sleep” (he has got to be exhausted, Joan told me earlier he has been awake since 3 AM).

Joan asked me to put out this update because of the number of texts she has been receiving. This will be a more efficient way to keep everyone informed. Thank you for your prayers.

Real Quick

Within these walls, I find myself in a constant emotional tug-of-war. On the one hand, there is the need for speed. For those of you who do not know Matthew, he is a 24/7, on-the-move kid with one speed – fast! Because of that, he can be a danger to himself and therefore Ron and I must be diligent. Because of his actions, we are on constant alert, don’t get nearly as much sleep as we’d like, and we are constantly planning activities to keep him productive so that life doesn’t sink into chaos. If this seems rather all consuming, it is because you’re getting the picture. Throughout the day, Ron and I will say to the other, “Real quick, I am going to…” What we mean is this: “Could you be on Matthew duty for a few minutes because I really want to do this one thing and I can’t watch him at the same time?” Apparently, we say “real quick” a lot because we’re starting to hear it echoed. A few days ago, someone called. Whenever Matthew is around, he asks to be in on the conversation. This time he said, “can I say hi, ‘real quick?’”

When I walk into the side of the house where my parents live, I must remind myself to slow my brain, speech, and movements as I care for them. To connect with them I must go from 60 mph down to 10. I’ve learned to do that (outwardly at least) in a matter of seconds. It isn’t just care for my parents that slows me down, the quarantine also slows me down, preventing me from connecting and getting out as I would like. This may be God’s way of saying, “be still, look up and listen to me. Know that I am God.” I need this so that I will bear His image more instead of my own. And it is these times of reflection and focus that give me the energy for when I need to be in high gear. Psalm 62, ‘For God alone my soul waits in silence… He alone is my rock…I shall not be greatly shaken.”

*  *  *  *  *  *

Ron here…

So, the other day Joan’s break time was over and she had written down thoughts along these lines. She asked me to make some sense of them and to send them out. This evening I’ve finally had some time to do that. Hopefully, I’ve conveyed her intent.

And since I’m sending this out, can I ask something of you, “real quick?” Could you offer a prayer for Joan and Matthew? They are at the Children’s Hospital of Philadelphia for a protracted EEG. It is step one (in a series of many) to trying to eliminate his seizures – that is, this test will tell us whether that might be possible.

Shortly after admission at CHOP this afternoon she texted, “I will have little time to think down here.” So, Joan is caring for one. I’m caring for the other three until they return. Guess who has the more consuming task? Hint: The fact that I have time to send this out to you should give you the answer.

“promising”

Tomorrow is Kari’s 34th birthday. For those of you who know her, another such milestone is amazing! We begin our celebration this evening with a small family party. And something else is happening today: Kari’s younger biological brother, Jeremy, is going to give a blood sample for genetic testing at the Clinic for Special Children (CSC) in Strasburg, PA.

Nearly two years ago the CSC began the most comprehensive testing on Kari ever. Basically, they are looking for a “needle in a haystack.” Somewhere within the 23 pairs of chromosomes, 20,000 plus genes, and 1,000,000 plus individual points on the DNA that they can “see,” there is most likely the clue to all her seizures and disabilities.

Last week we got word from the CSC that they found something “promising.” That’s the reason Jeremy is going there for genetic testing today. They’ll look to see whether he has the same needle in his haystack. The comparison will either confirm or deny their hypothesis.

We’ve had “promises” in the past. A leading neurologist in NYC found Kari to have an elevated acid in her bloodwork and he was sure he was on the path to an answer. For two years Kari was on a medical diet that stopped all her seizures (down from 100 a day, including up to five grand mals). After her diet was completed the electrical storms in her brain gradually returned. And then there was Kari’s “awakening:” She was twelve years old. For thirty days we were astounded to see new developmental abilities each day – like an infant who had unlimited potential – only to see her regress to her previous disabilities. Though we tried, we were unable to recreate the circumstances that allowed this window to the miraculous. How heartbreaking that was.

When a geneticist gets excited and uses the word “promising” it obviously gets our hopes up. We think this is the closest we’ve been to an answer for Kari. But even if a diagnosis is finally made (after 34 years), that probably doesn’t mean there is an accompanying cure. The next step might be finding a researcher with interest in that part of the DNA. But maybe knowing what it is (apart from a cure) could help provide something to control the seizures a little better, maybe even help her connect better with her world. All of this will take time of course. There are all the other previous studies on Kari (and Ryan) that need to be reviewed for comparison and confirmation. Hearing of “promise” requires patience.

As you feel our hopefulness, we’d love to have you join us in prayer. Perhaps it would be God’s will to provide an answer to this mystery. Maybe there is something that could really help Kari after all these years. Whether or not that prayer is answered in this life, we rejoice in knowing there will be a day when Kari will be fully healed. We have that confidence because God always keeps his promises!

Ron (and Joan)

Encouraging Holiness

With all her charges cared for, Joan turned in early to get in some much-desired reading time. She has become engrossed in a book about one of her favorite “mentors.” She is reading the new biography of Elisabeth Elliot. (I did good. I saw it featured through “Revive Our Hearts” and donated to secure a copy for Joan.)

I also decided to turn in early after seeing the Brewers lead over the Cardinals jump to 4-1, figured the rest of the game probably wasn’t worth watching. (I was right. At 4:59 this morning I checked the score to find they had been trounced, 18-3. Ouch.)

Back to last night: I reached into my nightstand and pulled out a copy of Christianity Today. “What Real Leaders Look Like” – that opinion piece grabbed my attention, and this is how it opened…

“Something doesn’t smell right in Lynchburg, Virginia, home of Liberty University and its controversial president, Jerry Falwell Jr. According to a September report in Politico:

“Everybody is scared for their life. Everybody walks around in fear,” said a current university employee who agreed to speak for this article only after purchasing a burner phone, fearing that Falwell was monitoring their communications…. “Fear is probably his most powerful weapon,” a former senior university official said.

After reading several troubling revelations about the leadership of Jerry Jr, I suddenly stopped. I flipped to the front cover to see the date of publication. November 2019! This was written a full nine months before inappropriate selfie became big news, before his wife’s affair was revealed (permission for it to continue given by Jerry) – more than nine months before he resigned.

They knew – the board knew there were problems! Lots of people knew. And not just for nine months, but probably for years. No wonder Cal Thomas asserted that it isn’t just Jerry who should step down, but the whole board of Liberty University should resign.

But it is always this way, isn’t it? It was true of James MacDonald, of Bill Hybels, Mark Driscoll and just about every other such leader who was eventually forced to resign. There were lots of clues and even more than clues. Others knew. It should have been dealt with years before, but it wasn’t. And why?

Take a few seconds and read this verse – God is speaking through the prophet Jeremiah.

The prophets prophesy lies, the priests rule by their own authority, and my people love it this way. But what will you do in the end? (Jeremiah 5:31 NIV)

If you want a fuller description of what these prophets were like, read Jeremiah 23. Let me give you a taste of what is there…

And among the prophets of Jerusalem I have seen something horrible: They commit adultery and live a lie. They strengthen the hands of evildoers, so that no one turns from his wickedness. They are all like Sodom to me; the people of Jerusalem are like Gomorrah.” (Jeremiah 23:14 NIV)

So, how is it that Falwell and guys like him aren’t confronted (unless forced to because the PR has gotten super bad)? God gives us the answer in 5:31. “My people love it this way.

As the CT editorial points out: “We want ‘movers and shakers’ who can ‘make a difference.’ We hire not for humility and service, but for boldness, innovation, and creativity. Big is beautiful.” Falwell was the kind of guy was strong in the areas of finance and construction. He made Liberty bigger and greater. He gave them what they wanted most. What else matters? Well, “It’s time to remember the qualifications of biblical leadership.”

I would suggest there is another reason beyond the desire for “movers and shakers” that makes us willing to set aside biblical qualifications. As one fellow told me: “I like the fact that my pastor is just a regular guy who has all the same weaknesses that I do.” Okay, so we’re all human – I get it. But would we like it as much if our human pastors also had a passion for holiness, if they were to be careful to watch both their “life” as well as their doctrine? Instead of messages having lots of stories that reveal that our pastors are less than perfect (as if we needed to know that), what if the focus was more on showing us Jesus?

Remember when Peter fell at Jesus’ knees and said, “Go away from me, Lord; I am a sinful man!” Scripture has lots of examples of people being extremely uncomfortable with the “holy.” Think: the mountain that smokes, Moses’ face that glows, an ark that causes people to die when they peek inside, etc.

Chapter 5 of my book, “Have we lost out Head?”, is entitled: “My People Love It This Way.” We don’t always want Jesus to be the head of the church – at least, not really. It is more comfortable to have our churches be the kind of place that fits us better. Therefore, we keep Jesus a little disconnected from how we function. But, without connection with him the church has no real life. “Apart from me you can do nothing.”

In Chapter 7, I suggest one (of seven) remedies for this disconnect – that leaders “Be Examples Of What is Good,” subtitled, “Growing in Holiness.” In other words, the most important thing our leaders can do for us is to help point us to Jesus. They can’t do this very well if they aren’t pursuing Christlikeness themselves.

Although it can be uncomfortable for us (holiness often is), let’s encourage leadership that cares more about becoming like Jesus above all other things.

By the way, among the wonderful people who were a model of growing in holiness and encouraging holiness was Elisabeth Elliot. She understood that this was the goal for all believers. For women, she reminded them of the truth of Titus 2 and what holiness looks like in everyday activities, of showing affection to husband and children and in the work they do at home.

Joan stops her reading from time to time to tell me how she is certain I would also really enjoy “Becoming Elisabeth Elliot.” I’m sure I will! I kind of had reading-it-myself in mind when I bought the book. We all need godly examples before us (both past and present).

Dancing

Three times a day, the plate that sits quietly on the counter in front of my kitchen sink reminds me that, “Life isn’t about waiting for the storm to pass. It’s about learning to dance in the rain.”  I have had many vicious storms in my life. I have begged God to remove them all, but because He loves me, He doesn’t always listen to the whines of my heart. His plan is always better than my own. I just don’t always want to see it that way.  I confess, I want to have an easy path in life, tough dance lessons aren’t really my thing. For one, I have no rhythm and these days if I move my body too quickly or awkwardly, I feel some muscle react that I didn’t even know I had.

Being hunkered down because of Covid for 180 days has created a cranky Joan at times. Recently my brother called me a “total goofball” in a family email. What? I am about the most boring, quiet person that Covid could create. My days are filled with major caretaking with little time left for me to do much of anything I used to enjoy. All those things that psychologists are concerned about with all this social distancing and depression seem to have landed on me. I don’t feel creative or productive. The hospitality queen I used to be is gone, because I can’t let anyone into my home. I watch my mom suffer daily with her medical condition. I feel helpless to make my daughter’s world any less complicated. She has been trapped in a body that she can’t control for 34 years and is totally dependant on me to understand her needs. I have a son who has gone to death and back through a traumatic brain injury and, at seven, he can’t comprehend why the corona bug has to take away all his fun.

But still, that irritating plate sits in front of me, nagging at me to dance! To jump for joy even when it is pouring rain outside and the thunder is rolling. I think God has a funny sense of humor, because one of the extreme anxieties that remains in my trauma-induced child is the fear of storms. Guess what is the only thing that will calm him during a storm. Yes, you got it! To dance and not just a mellow slow dance, but a crazy wild, deep belly-laughing, hilarious rip-roaring kicking up the heels dance.

This “goofball” keeps learning. Psalm 50:23 message is kind of the same as my plate. “The one who offers thanksgiving as her sacrifices glorifies me.” Thanking God instead of complaining in the midst of a personal storm – Wow! Now that is a concept most of us don’t take much heed to. Thanking is like dancing, except it is moving the brain into a joyous position instead of the body. Try it. It will seem painful at first, because all you want to do when life is hard is complain and seek for ways to get out of the situation you are in. Being thankful goes against every instinct within you. Being thankful is a gift from God – one that needs to be opened and activated. And it is in that “thankfulness mode” that God can do His best work with you.

I am going to dance with my mind. I give thanks to you Oh Lord, for an incredible husband who walks beside me through our trials. I am thankful today for a son who named a flower “Glenda” during our morning walk just because he thought it was so beautiful. I am thankful for the incredible starry-filled sky at 5 in the morning that reminds me, You still hold all things in order when my world seems so disordered.  I thank you, Lord, that you do little miracles like turning water into wine (who really needs wine??) and huge miracles like raising people from the dead!! You know we all have different kinds of felt needs, and yet you care about them all. I have food, health, home, clothes (even if most are from the thrift store), a car that runs, air to breathe, great family and friends, a church that still live-streams for me so I can stay connected to God’s people and I can pray without ceasing – these are all dance tunes in my head today. They push out the gloom and return me to a place of joy.

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.