Born October 27, 2023 Healthy and perfect in every way.

On a perfectly sunny day, I am sure you are wondering why I am speaking of storms in Pennsylvania. Florida is experiencing storms today for sure, from which there will certainly be major clean up required. As you know, Kari has been dealing with some terrible symptoms since February and we have been driven to find answers for her. Today was the next step – to see a neurosurgeon. He was most helpful to us. First, he listened! Second, he gave us hope for solutions, though agreeing this is quite a conundrum.

Three things (at least) have come together to cause her terrible pain. Her 1^st neurologist, trying to control seizures had increased her implant to a heavy setting. This likely caused agitation, even pain. And she was probably already having neck pain from degenerative vertebra (which was only diagnosed today even though X-ray has been out there for all to see). The compounded agitation may have caused further pinched nerve and then all these stress/pain issues caused more seizures. A vicious “hurricane” of conditions.

Now we are in the process of “clean-up” of the mess that this has been left behind. Since we convinced neurologist #2 to turn off the VNS, Kari has had much less pain and no seizures. She still is having some pain, but between analgesics, neck brace, and positioning changes, we can get Kari to sleep at night without us calming her neck by holding down her head. Today, the neurosurgeon said the last resort is to take out VNS (major surgery). He would like to have us try physical therapy on the neck to heal damaged muscle and nerve, and possibly steroid injections as well. If Kari still does not get more relief, we will go back to him to “talk next steps” (such as more detailed imaging).  Please pray that physical therapy will be very helpful as we work at restoring our daughter to better health.

And pray for those in the south who also will be facing major clean-up!

Joan

to lighten the load sometimes.

The “Preacher” of  Ecclesiastes says in 8:6,7: “ For there is a time and a way for everything, although man’s trouble lies heavy on him. For he does not know what is to be, for who can tell him how it will be?” Yes Preacher, you nailed that one 3,000 years ago!

Heavy is my heart, nauseous is my stomach, and tear-filled are my eyes. Last evening, we got the phone call from our son Jeremy and Sarah that we were hoping won’t come for a very long time. But their adorable 20-month-old daughter Elia (our sweet granddaughter – who calls Ron and me “Guckie”) didn’t exactly pass her echocardiogram today. She was born at CHOP because they thought she may need immediate open-heart surgery, but we celebrated then because she came through strong, not needing it and was home snuggling with her parents on Christmas Day! Now the heart is indicating change and in two months she needs further detailed heart evaluation. Depending on what that shows, the heart surgery will happen sooner. In the meantime, they are to watch for signs of heart failure. No parent, (nor grandparent) wants to get this news on a daughter they love dearly! HEAVY feelings!

So please pray for them, especially Sarah who is carrying their second daughter – due in October. She is doing great, baby too, but none of us like the added stress for Sarah these last 10 weeks as she prepares to give birth. Soe, for those of you who are grandparents understand why (when I heard the news last night), I didn’t know if I should vomit, cry, holler. Ron, fortunately, suggested we pray. And I have been pretty much doing that ever since and now I am asking you too! HEAVY prayers!

I also have not been talking much about the journey we have been on with Kari over the past 6 months. So complicated! But praise God, we do believe we have targeted it to the VNS – a implant in her chest with leads going up her vagal nerve. Kari has intractable seizures and 18 years ago while living in IL, a neurologist strongly advised to have this new device placed to get her seizures under control. And for 17 years, we believe it has worked well. Unfortunately, all good things come to an end, and we believe that is where Kari is regarding this device. This journey is now leading us to a neurosurgeon on August 30th. If there is a problem, which we are all highly suspecting this “hardware” guy must get it out. And when dealing with the vagus nerve, this is not an easy surgery.  HEAVY path Kari trods and we with her.

II Corinthians 4:18 says, “So we do not lose heart….for this LIGHT and momentary affliction is preparing for us an eternal weight of glory beyond all comparison.” Maybe 2,000 year old Paul didn’t get the idea that these things are Heavy? Hmmm, but he was inspired by God too! Maybe I need a little more time to dwell on eternity ‘til I can sense the “light” that the Apostle Paul experienced. As I think about the trials he went through, and the terrible trials I see in contemporary humankind, I do not think I should complain. God has blessed me with so much. I still have my home, my identity, my sweet family, food, clothing and an eternal inheritance because of Jesus. Yes, my heart grieves big time because of my Denlinger ladies, and right now that is appropriate. I love them so much! And it does lighten my heart to know that God loves them even more and He’s got them all in His hand. He is going to carry this heavy burden and make it LIGHT!

As many present told us, “Matthew brought down the house” at the JAF Talent Show.

By Joan

Oh, where to begin! Our family is fresh back from our Joni and Friends (JAF) Family Retreat. What a week! As many families have said this past week: “For those of us with special needs kids, this is the closest thing to heaven there is on this earth!” I agree – a family vacation, with trained help for our kids, incredible meals, programming, and spiritual worship all in a refreshing mountain setting. Amazing!

From the moment we arrived until we wrapped it all up yesterday, my eyes had a rare break from tears of joy! So many God-sightings – some I won’t be able to express here (for they were just for me), but others I will try to pass on.

In our debriefing session as parents yesterday, Samwise from “Lord of the Rings” was quoted. Watching Frodo struggle under the weight of being the ring-bearer, Sam says, “I can’t carry it for you, but I can carry you.” That is how we parents feel. We wish we could carry the disability for them. It is a heavy burden watching our children in their 24/7 battle with great limitations and we can’t change that, we can only come alongside and help them. And then JAF made our burden lighter by coming alongside our families and helped us have an incredibly great vacation. For five days they “lifted” what they could while celebrating the abilities and joys in each of our kids – what a blast!

That is what so many of you do for Ron and I. You carry what you can through prayers for our family, finances that made this vacation possible, friendships to us when our family is hard to connect with, and just a boatload of understanding that is so refreshing when many in this world look at us as odd. So, THANK YOU – it means everything!

At JAF, we do not feel different. One mom pointed out, that despite the normal world of extreme divisiveness, for five days, we felt incredible unity – no matter our background, religious or political differences, our children with their lack of filters break down walls and we meet at the same level – at the feet of Jesus. And there is so much joy in this place. Wholly weak, wholly dependent on Him, Wholly, a worshipful place to rest!

Matthew was a definite bolt of sunshine in the whole camp. Of the 300 people at camp, pretty sure there was not one person who had not interacted with him. So many laughs and happy moments because of his intense need to love-on everyone! The last evening at the talent show, they assigned him and Ron as the closing act – Ron was Matthew’s pianist. Matthew brought down the house with his song and tears were flowing liberally. It was sheer joy. But what got me the most was a comment he made into the microphone right before he started singing. He wanted the audience to know that Kari was his sister and he pointed to her, and he wanted them to know he was her brother. (Tears flowing again at this point). In Matthew’s mind, it connected that his sister can’t speak or do anything, and he didn’t want people to miss her.  And he is proud of her!

I am going to let pictures of our week say the other thousands of words I can’t. But as I enter back into my normal world of cooking, laundry, cleaning and all the “heavy” work of childcare – please know that Jesus is carrying us, and I will be OK as soon as I am able to see out of these blurry eyes of mine!

By Ron

(Reports on Kari and Matthew included)

I am not the kind of person who changes their core beliefs much or very quickly. My worldview today isn’t much different today than it was forty years ago. Inspiration of Scripture, explanations for evil and suffering in the world, the nature of man and his value to God – this kind of thing.

That said, my view of the world can change quite a bit from one season of my life to another, even from one day to the next. I’m talking here about how I can see things due to my emotional state. A present example…

For the last three months (except for the last week), Kari had not been doing well. It’s all about her arch nemesis – those intractable seizures. We were very concerned. Perhaps things were winding down. Degenerative diseases do that (get worse) by nature, don’t they? Perhaps this was the beginning of that final descent from which she would not recover. We felt we were losing her. She was, frankly, experiencing a lot of misery. We in turn were as well. None of the old tricks / adjustments to her care helped. Things kept getting worse. And this colored just about everything in my world.

But then, a week ago Kari had a sudden turnaround – a response to the last of the items in our bag of tricks. And it worked far better than we would have dared to hope. Within a few days we had our Kari returned to us! She continues to do amazingly well!

“When the LORD restored the fortunes of Zion, we were like those who dream.” That’s how I feel – this is an “almost too good to be true” experience.

Our workload hasn’t changed much in type or volume, and yet it is suddenly lighter and more manageable. And we dare to hope again. Maybe I’m still being a bit cautious, not quite as “light as a feather, happy as an angel, merry as a school-boy, giddy as a drunken man” (to quote Scrooge) but feeling pretty good!

Sunday night, Matthew and I slept out in the tent camper. At 4:10 I was awakened with, “I hear the birds singing!” Yes, it’s like that. I’ve awakened to hear the birds singing again.

Somehow, for three months we persevered until the dawn of this day. And yes, no doubt our larger worldview is what helps get us through such times.

So, that’s the “fantastic news” (the exclamation from the neurologist about Kari) that I share with you. Now for the report from a different medical doctor: “Best vision I’ve ever seen from Matthew” (ophthalmologist at Hershey Med). In addition to seeing things very clearly, Matthew is overcoming “convergence insufficiency,” which means he now brings his eyes together well enough to be able to see 3D (depth perception). We believe this is one of those continuing benefits of the hemispherotomy surgery back in April of 2021. He still has no right field vision and never will, but he is on a path to getting the most out of what he has. Amazed by that as well!

But wait, there’s more. We’re going to be grandparents again. Elia is going to have a sister in October. “What a wonderful world.”

Well I have been slightly rebuked over the last two weeks. One for not blogging recently, and secondly, for not asking for prayer. Both are true. It is not because I haven’t had things to write about or ask prayer for. Also true: those who live with chronic pain, illness, disability, etc. sometimes fear that others may get tired of hearing about those things – may sound too much like complaining or a “woe is me” attitude. So, I stay silent.

I shouldn’t though. I have so much to thank God for. I have been in a Philippians study this Spring. It is a powerful little book with so much encouragement. Apostle Paul is our cheerleader, despite his being in jail when he wrote it. Think about that for a second, and then read the whole book in one sitting! It will cheer your spirit, even more if you act on it – which in my meager way will try to do now.

“Rejoice in the Lord always… (Phil 4: 4-7)  I rejoice that I celebrated my 60^th b-day a few weeks ago in style. My family went way beyond what they should have to celebrate this milestone, but I loved it! In a huge gift to me, family and friends paid for a true vacation for our family this summer to a Joni and Friends retreat week. I just can’t wait! I rejoice that I am still pain free from back surgery. I still have some lingering effects that possibly may be permanent considering the bad damage I had, but they are effects I can live with. I am happy for Spring’s life that is emerging, that I have yard work to do, and that I will be able to do it this year!!  I rejoice that our family is expanding with a little babe growing inside my daughter-in-law’s womb. Grandbaby due in October. So excited!! And Elia continuous with health and the sweetest spirit that any grandparent could want! And I have even more to rejoice about, but time and space limit.

“Do not be anxious about anything…” Yes, Lord, I know but what about these things? I send my little boy to an elementary school every day and don’t know for sure if he will come home again. Our world isn’t a safe place anymore and I grieve for those families who have lost their precious family members in gun violence. I grieve for those who have lost everything in storm.  I grieve for those who have lost family to drug abuse or suicide – including my own family.  I grieve for mothers who have ended their children’s lives through abortions, and I grieve for my brothers and sisters around the world who are facing incredible persecution all because they love Jesus. Oh, I grieve, and I pray against the evil of this dark world.  And I grieve the condition of my daughter’s life. One that is very weak but still is battling the effects of her horrible diagnosis. The last 3 weeks have been very tough. She is dealing with symptoms that are so bad but not life threatening (but could become that) so I haven’t asked for prayer, even though Ron and I beg God daily for help. When you have a child that is the oldest of 52 in the world with her diagnosis and most of them don’t live beyond ten, there is not much hope that any help is out there. Another Phil passage Kari and I dwell on and discuss much: “We eagerly await a Savior… who will transform our lowly bodies so that they will be like His glorious body.” That one is packed with promise!!

But bottom-line reason for this post… we do need prayer for Kari. Ron and I have made some treatment decisions that are risky to her health, but we don’t have much choice. Bottom line, Christ has everything under his control (Phil 3:21) so we make some adjustments to our Kari care plan and I send my son off on the school bus praying for his safety. Bottom line is… “I want to know Christ and the power of His resurrection…(Phil 3:10) “The power” of God that raised Jesus, is the same power I have available to me for every detail I face every day. And that is a confident power to rest on… my bottom line!

This phrase is not original with me, but I (Joan) sure do resonate with it! And before January has ended, I feel compelled to share my heart. I prayed long and hard before sending out this message, because I know for some, these are “unfriendly” words.

A few days ago, our country reached the 50^th anniversary of Roe v Wade ruling that abortions were legal at a federal level. Of course, as you know, that was overturned last summer and now abortions are legal (or illegal) at a state level.

Lots of loud voices since are complaining that we have gone backwards. “It is a women’s right to control her own body”, “The state has no right to interfere” – we hear it all!

What we rarely hear about are the rights of the baby struggling to survive in a hostile environment. And so, thousands over the past 50 years (including myself) have marched to protect the innocent, the unborn that cannot speak for themselves, who are hidden and unseen, but made in the image of his or her Creator! And of course, a secular worldview does not see it this way. What it sees is an inconvenience, a hardship, not even life.

But a Biblical worldview is diametrically opposed to that. Our eyes see these scriptures: Gen 1:27, Exo 4:11, Ps 127: 3-4, Ps 139: 13-16, I Cor 6:19, Rom 12: 1-2. And if you don’t automatically recognize these verses, look them up and commit them to your life. It is by “faith” that we walk this path of ‘pro-life” in the tough cases. Imago Dei means I see and celebrate God’s image in every person, in every season, stage and struggle. And that image has profound value.

It was easy for me to march in Washington for innocent babies (cute, helpless, and adorable) before I had children. My “march” for prolife has become more difficult, more hostile and taking more gumption to walk beside those who are disabled, disfigured, destroyed by disease, and unproductive – when it meant I would give up even more of myself to become an advocate, caregiver, and lover to those who receive very little love. Some days I want to say, “God, it is too much to love the unlovable in our world!”

What about those around us destroyed by disease, deluded, darkness, downright evil, depressed, dementia, a different culture, (how many ‘D’ words can you come up with?).  But each affected person is stamped with the image of God whether we can ‘see’ it or not.  No one is outside the reach and compassion of God.

Be amazed today that God reached down and grabbed your heart and thank Him for stamping His image on you, and then look around and see who you can reach out to (even if they seem very unlovable) and give grace, mercy and share the truth of God’s word with them today.

It is tough living with a man who is logical, loving, godly and devoted! Hmmm, let me look at that again! Well at least it is tough when you are a mom who is frustrated, emotional, ungodly and tired! Most days I am incredibly grateful for Ron who brings so much love, healing and stability to this family. But yesterday – I just wanted to be mad. Another thing broken in our home by the hands of our dear sweet traumatic brain injury child. It appears it is a regular occurrence around here. But this time, it was an expensive Christmas present. I won’t say what it was because I am not playing on your heartstrings. I know many of you would ship me Amazon boxes of the item. 😊 But I did try that angle on Ron, “We won’t have any money left till he is 18 to recover all that we have lost around here at his hands!” Thinking certainly Ron would be as angry as I was if I brought up finances!

No, he was unphased. “I do not know why Matthew does what he does, but I do know that his body is broken and maybe sometimes he gets very tired of living with a broken body and wants other things around him to be broken. Let’s just keep focusing on how far he has come and be patient with the rest.” Ugh, I crumbled, felt horrible, guilty, and so defeated.

It was just earlier in the day that I was sobbing during a scene that Kari and I watched from “The Chosen” (Season 3 episode 2). In case you haven’t seen it, I don’t want to be the spoiler, but here is the clip if you want to see it. The subject is healing.

Regarding complete healing- Kari and Matthew haven’t experienced that this side of heaven- but the Word speaks to that issue, and I was reminded again of the many ways that I don’t always have my thinking lining up with Christ’s! (Case you missed it- that was the major understatement of day).I, too, am a broken person. We all are! We all need a Healer, a Repairer of our broken souls, a Rescuer to save us from our sin, a Savior who carries us on his shoulders during our incredible weakness – Jesus. Look to Him, trust Him. Peace has been restored in my heart and home. Matthew is no longer living with his mom’s wrath. Humbly submitting to the ways of Christ really is the way to live- abundant living!!

Today, you can also pray for me as I celebrate six months since my back surgery. Visit to surgeon will hopefully relieve me from all my post-surgical restrictions and I can get started with that construction work, beginning with my own heart! Happy New Year!  Joan