Updates from the Denlingers

The “Eyes” have it!

Not much voting going on in the Denlinger home and not much blogging either. Not because nothing is happening- quite the opposite.

One knows he is getting older when he focuses on body parts. Ron and I both are noticing wear and tear on these aging ‘tents’ of ours. But suffice to say, today’s writing is only focused on eyes! And you are getting the ‘unedited Joan’ because Ron doesn’t have enough eyesight to oversee me. Oh boy!

Two weeks ago, he had his 8^th or 9^th eye surgery (we lost count). I won’t give the gory details, suffice to say we are trying to save his eyesight, but recovery has been rough. The May surgery was part I of two-part surgery. Second is in July, which we don’t want to talk about when the first has not healed yet. Basically, he has tremendous light sensitivity, inflammation, and swelling. It is exhausting, painful, and disorienting. I feel terrible for him. He must take a slew of eye drops every two hours, must wear two pairs of shades if sun is anywhere near him, even in the house the light can be too bright. Today the doctor tried two more types of drops. He needs prayer.

Monday, Matthew was sent home from school because of conjunctivitis. Eye drops three times a day for him. Wednesday night, Kari started screaming. She poked herself in eye and scratched cornea and couldn’t open eye for 24 hours and was miserable. Antibiotic eye drops for her four times a day.

I made a decision! Since I am the only one in house that can see and do all the driving to appointments; I am not allowing any naysayers- only the ‘eyes’ have it. No asking God, “why?” “How long must this endure?” “Purpose God?” NOPE, they are questions for another time, too much to do now!

What I do know, I am weak, and He is strong. We can all see that clearly! We see God providing help, food, love, prayers in abundance. We see the emotional needs of each other and make sure everyone feels card for. We see Jesus works greater in darkness because He is the Light. We see him carrying us through this trial just as he has done in the past. We see He is a good God.

We saw a blessing this week beyond our imagination. The ultrasound of our wee baby granddaughter! Yup, Jeremy and Sarah are blessing us with baby girl #3. We couldn’t be happier.

“The eyes of the Lord range throughout the earth to strengthen those who hearts are fully committed to Him.” II Chronicles 16:9

He is watching us! Keep the eye of your heart focused on Him!

Gene (jean) Day

Today, the last day of February, is Rare Disease Day. I (Ron) suppose the date is so chosen because “Thirty days hath September…” (you know the Mother Goose rhyme).

In case you forgot about Rare Disease Day, don’t feel badly. Had our friend Bethany not written us today, we probably would have missed it, even though we live with rare disease every day.

Because of the rarity, there doesn’t seem to be a clear color associated with its observance such as pink for breast cancer. Another one familiar to us is purple for epilepsy. For Rare Diseases, some wear black and white stripes. Others blue or blue jeans (genes).

Kari’s (and Ryan’s) rare disease is called RARS2. There are 50 or so in the world who are known to have this genetic defect. It was first identified fully in 2016, making it both rare and recent. Kari is even more rare in that she, at 38, is the oldest known individual (by quite a bit) with this particular mitochondrial disease. 80% die prior to age ten.

We all would prefer good genes of course. For example, I was very happy to learn that I am not a carrier of the recessive gene for cystic fibrosis (from which my brother died).

“Eugenics (from two Greek words for ‘good’ and ‘gene’) is an immoral and pseudoscientific theory that claims it is possible to perfect people and groups through genetics and the scientific laws of inheritance.” The goal is to fix evolution’s deficiencies. Put another way, eugenics is designed to help evolution along since “survival of the fittest” eventually wins out in that schematic, doesn’t it, so why not achieve that more quickly?

Because of eugenics’ association with Nazis, the word has fallen out of favor. That doesn’t mean the idea isn’t still with us. By the way, Hitler didn’t come up with his ideas on his own. In “Mein Kampf,” he referred to American Eugenics.

Some rare diseases are “becoming increasingly rare.” Sounds like a good thing, right? Here is one reason why this is true: “The prevalence is decreasing due to increased awareness of prenatal ultrasound scans.” Yes, that is a nice way of saying we can prevent “bad births” through identification and elimination.

Do we want to think about any of this stuff? Probably not. Frank, I don’t. I just want to recognize the day because Kari is super precious to me and I want her situation not to be overlooked. But there is more, and it is critical.

Remember the poem “For Whom the Bell Tolls” by John Donne? No man is an island. We are all bound together. Whenever we devalue the least of these, for whatever reason, we devalue ourselves. On the other had, as we celebrate those more negatively affected (when things aren’t as well as we’d like regarding health of our genes), we remind ourselves that we are all fearfully and wonderfully made.

Getting Back to Normal

Joan continues to recover from whatever that was. She asked me (Ron) to give an update since she is busy watching Elia downstairs while I’m keeping an ear out for Lucy who is sleeping (our granddaughters) and for Kari who is by the vaporizer. Kari isn’t sick, we’re just doing things to help keep her healthy.

We were all kind of traumatized by this week’s crisis. Joan certainly was in pain, then in shock and now having to deal with stuff draining from the incision and I won’t go into any more detail about that – supposedly part of the healing process. She slept great last night and her face looks very close to normal again. She is very glad about the improved face because she didn’t want to terrorize her granddaughters.

I was wiped out from extra work but mostly emotionally drained from seeing Joan suffer. Kari also sensed the difference. Didn’t receive as much attention – wondering why Dad is doing all her care. And then there is Matthew – normally talkative Matthew and even more so. Suddenly focused on Dutch Wonderland and all the rides we are going to go on and in what order (if I had to hear about Merlin’s Mayhem one more time…!). We think seeing mom look sick really scared him and he just wanted to focus on the promise of a happier time to come. And apparently Dutch Wonderland was the happiest thing he could think of!

Matthew being in school is an important back to normal – he was home with a sore throat the same day Joan was getting care (“where’s mom?” repeated often). Tonight, he swims at Landis Homes. Tomorrow he and Joan are going to CV High School to see the Harlem Wizards and on Saturday at 11:00 he will be at the Park City Center auditioning to sing the National Anthem at a Stormers game sometime this summer.

I have no idea if our “normal” sounds normal to anyone else, but we kind of like it – it sure does beat the alternative! We’re thankful for the return of the regular craziness and all your support in getting us through a tough time!

Why?

Isn’t that the question we ask when a mystery complicates our lives? There is also How, When, Where, What, Who. Since Matthew and I are into “Hardy Boy” mysteries, these questions plagued my mind the last three days.

Some of you have heard that I (Joan) went through a harrowing experience yesterday. I was up all Monday night with a face that was swelling up on me and I had tremendous pain and fever for 2 days before, but when the swelling showed up, I knew I had to act. But that is always complicated. How do we do that? I drove myself to ER, they slapped IV antibiotics on me immediately, long story short the What- I had to have emergency surgery to keep a fast-growing abscess in my face from going to brain. It was a horrible experience, just about slugged the surgeon three times with anesthetic not working. Shook for 2 hours after because of extreme shock. But happy to report, this morning, I am doing so much better. I don’t think my grandchildren will be afraid to look at me. I changed my appearance, but my swelling is decreasing.

We have an incredible posse that swarmed on the Denlinger home to help Ron left behind to care for our three special needs folks. Matthew stayed home from school because he was fighting a sore throat, and had major distress because mommy was not here when he woke up. If you understand a child of trauma at all, you understand how much something out of normal routine temporarily sets him back at least 3 yrs. Hence the extra responsibility and patience for Ron. Kari took it all in stride. It takes about 24 hours for my dad to understand what was happening, but when he did this morning, he said to me, “if you lived in Africa, you would have died!” Yup I think it was sinking in. 😊

So back to Why? Don’t have an answer to how I developed this abscess. Surgeon did not either and his only concern- get it out and get me on the right powerful antibiotics to keep it away! Glad for surgeons, even ones I want to slug.

But some already whisper, “why do the Denlingers need to go through so much?” And I scream it! But even as I laid in ER thinking I was dying; I kept my focus on Jesus. His suffering is more than I can ever imagine. We do enter it, because He said we would in this world. And for that I need to be content. He has our back more than I can ever know. He loves me more than I can ever know. He sends his incredible team of helpers to get us through. Thank you to those who have prayed and for those who can now pray since I wrote. Monday, I have another procedure to hopefully complete this whole process. It is not an emergency, and I am really looking forward to that anesthetic!!

The “Woodies”

“Promise me you won’t ride the roller coaster!” my mother pleaded. “You don’t have to worry about that,” I (Ron) assured her. “There’s no way you’d get me on one of those!” I couldn’t have been more sincere.

I was 14. It was my first time going to Hershey Park. It was with our church youth group – the Paradise MYF (Mennonite Youth Fellowship). I ran with the group into the park and before I knew what was going on, I found myself in line for “The Comet.” Caving to peer pressure, I found myself in a car, being tugged up the long first hill with that chain-pulled-by-gears-rattling sound. Going down that first hill, I was sure that my heart had stopped – I was going to die! If only I had listened to my mother. But as soon as it was over, I was one of the first to say, “That was amazing! Let’s do it again.” And we all got back in line.

This weekend, that memory came back to me vividly. Rather than feeling terror, my heart was filled with praise. On Sunday our family was at Knoebels. We were sure that Matthew would have a great time. Then again, the “Phoenix,” “Twister” and “Flying Turns” were thrills far above and beyond DW’s “Kingdom Coaster” and “Merlin’s Mayhem.” With our season passes (and just two miles down the Lincoln Highway) we had been on both countless times this summer. As for what Knoebels offers, turns out that no ride is beyond him. Matthew would have even gone on the “Impulse” but to that one I said, “No!” (even though theoretically it may not have been as terrifying in one sense because a steel coaster is a smoother ride than the “woodies” we rode). Joan and Kari seemed completely content to follow Matthew and me as we went from one coaster line to the next. Kari was awake and wide-eyed all day!

Many times, I feel very unprepared for the kind of “work” that Joan and I do. So much is on-the-job training. Out of love, we dive in and do the best we can. And often I just feel very old, trying to keep up with my pre-teen boy. I can’t tell you how good it feels to have shared interests like riding the “woodies.”

Thinking about different ways that God has worked in my life and interests that I have developed (such as music and language – two of Matthew’s strengths), encourages me. Matthew tells me often that we’re the perfect parents for him. Other parents watch as Matthew runs to us and hugs us. Some say they only wish their middle schooler responded that way to them.

It seems like an insignificant thing – that a super-cautious, fearful teenager would find himself on a roller coaster and enjoy it. More than 50 years later, I’m so thankful for that moment – amazed at all the little ways that God has blessed me!

Big Personality

Today was one of those days when we we’re not as happy – a day when Joan gets a phone call from the school (again). We get a little weary of the antics and the obsessiveness and so on.

And then we watch the news and see what others see – how he fills a room with joy and also once again finds a way to be the star of the show. And we start laughing again!

https://www.fox43.com/video/news/local/521-c853161c-f009-4b8f-aec3-ebdf5febd339

September 10

Right after midnight, in a quiet New England town, a baby boy was born. The only baby in the labor department. so his wail echoed in the hallways along with laughter of parents and doctor over the joyous occasion of a successful, healthy birth. Ryan Keith Denlinger had arrived. Our “little king,” would be the perfect protector and cheerleader of his older severely disabled sister – we thought.

That was not to be. Almost 6 years later, he returned to dust as we laid him in the grave and trusted his soul to God. Our wailing, we thought, would never end. A five year-old should not die!

“Weeping remains for a night, but rejoicing comes in the morning!” And as I wrote in our story “Joy in a Foreign Land,” that ‘night’ was a long one. But truly, only because of Jesus’ merciful love for us, joy does come! It comes slowly, subtly, abundantly, and before I know it, I am celebrating a life I am so privileged to know and one day be reunited with. And in the meantime, I have so much to be thankful for!

“God, you have turned my wailing into dancing; you removed my sackcloth and clothed me with joy, that my heart may sing to you and not be silent. God, I will give thanks forever!” Psalm 30:11,12

My forever thanks: The picture above, three of whom would never exist had Ron and I not been convinced that every life is valued, even ones with severe disability. We took the risk of having our 3rd child Jeremy, who in turned blessed us with d-i-l and granddaughters. And Matthew was ‘”birthed” out of our Ryan’s Home Ministry – fostering special needs children.

They sent balloons to heaven today, celebrating a life never forgotten! Happy Birthday, Ryan!

Joan

Graduation

Aug 15, 2024, was Matthew’s second graduation from Schreiber Rehab. What that includes is a round of applause from staff and a painted handprint and name permanently placed on wall. The ceremony was cut short yesterday because we (Joan and Matthew) were anxious to go to the hospital to be with Kari who was in severe pain (more on that in a moment).

This second round of weekly therapy began on May 18, 2021. It was immediately following his discharge from CHOP after his hemispherotomy and the morning of his beloved Grandma’s death. The “bookends” of these three years (plus) of therapy are harsh, but the weekly therapy in between has been amazingly helpful. The effectiveness of their work with our sweet boy cannot be overstated! He went in barely able to walk. Three years later he dances, runs, balances and has forgotten his wheelchair days! I never do this, but because I am so proud of Laurie Panther, PT, and team at Schreiber… In honor of Matthew Denlinger’s graduation from Schreiber, if you would like to send them a small gift, we would so appreciate it! (Schreiber Center for Pediatric Development, 625 Community Way, Lancaster, PA 17603)

As I write this, Kari is in the process of “graduating” from her stay at Lancaster General Hospital. She was admitted yesterday with severe pain that left Ron and I exhausted and very bewildered as she screamed for hours in severe distress. Ron took her to ER while I took Matthew to his therapy. Ron called me to make the switch of kids as Kari’s care was getting more complicated. The initial CT scan of her abdomen showed a “possible” bowel obstruction. The 2nd scan showed a “resolving” bowel obstruction. Head to toe testing also shows severe cornea ulceration, and a UTI / kidney infection. We finally had answers for her distress. So extremely difficult to go through having a child in pain, who cannot communicate the source, and there is nothing we can do to relieve her. But the great treatment she is getting at LGH is relieving her pain (not completely, but you can bet, I am ready to get her out of here, which will also add to her comfort). Loving our medical care available to us here in the USA, causes my heart to always goes out to the disabled worldwide who do not have access to the same level of care. Hence the reason, in honor of Kari Denlinger and on behalf of the least of these, a small gift to Joni and Friends would be so appreciated (www.joniandfriends.org).

PRAYER REQUESTS:

Full resolution of Kari’s present medical issues

Matthew’s upcoming entrance to middle school on Aug 26

Strength, energy and wisdom for Ron and me as we continue to care for our three precious dependents (my dad included).

Debarkation

“A person who lives in faith must proceed on incomplete evidence, trusting in advance what will only make sense in reverse.” Philip Yancey

Debarkation (completing the voyage) and Debriefing (upon completing the mission). Here is our “wrap-up” of the Denlinger 40th anniversary cruise. Where we crazy to take two very special needs kids and two very young grandchcildren on a cruise to Bermuda? Perhaps “crazy,” or “huge step of faith.” Looking in reverse, Ron and I are ecstatic that we took the dive! How do I sum up the last 5 days?

Matthew: “It was epic!” Kari just smiles. Ron slept most of the way home from NYC (expressing total confidence in our older son to drive the “party bus” home.

I have more love and pride in the family that God has put together and am so thankful for the forever memories we now have including:

Swimming in Bermuda waters with a very happy Matthew and Lucy
Being on the High Seas – ocean all around us – with moon and husband / wife time
Fantastic meals with all our kids and grandkids and enjoying all the different personalities intermingling under relaxed circumstances
Sarah and Matthew wowing the crowds two evenings with their karaoke skills
Elia charming cruise mates with her smiles and waving at everyone
Family Fued, comic shows, Dr. Seuss story hour
Ron and I taking time to reflect on each decade of marriage and praying over God’s path ahead

Embarkation

“The process of getting on your ship.” Oh yes, I (Joan) am learning a whole new language these days. Our 40^th anniversary trip is about to happen, and it has been a long and arduous journey to this point. Fighting for continued intimacy in our marriage, fighting for our kids’ health, fighting through the endless details of preparation – so that this dream trip can become a reality…

Many of you know our story and know that it hasn’t been smooth sailing, so you have given your blessing (“well-deserved,” you tell us) and encouragement. And for that I thank you and ask that you keep praying that “embarkation” will become reality – final countdown is on!

At the same time, I pray every morning for the persecuted church and often feel so undeserving of such luxuries when I compare myself to my brothers and sisters around the world who suffer for Christ. In Phil 1:13, Paul said that it was because of his chains that others could be bolder regarding their sharing the gospel of Christ. And that is one thing I want our whole family to be on this trip – an example of Christ’s love and righteousness. Pray that our love would abound more and more for each other, SO THAT, we would be filled with the fruit of righteousness that comes only through Christ Jesus.

Pray for…

#1 this boldness. Many have told us that, because of Matthew, everyone on the boat will know us. And yes, we are very aware that things like wheelchairs (seem like we have our own chains at times) cause our family to be obvious to all. As for Matthew’s role, he needs to make friends everywhere. Pray that his “no-filters boldness” can become opportunities to share the basis of our life and hope – the good news of Jesus.

#2 health, peace, sleep, and fun for us all.

#3 Peace for my dad who will have different surroundings while we are away and for my sister and brother-in-law who are taking on his care.

#4 Ron and I will have significant time to capture and celebrate the joy of our last 40 years and commit to seeing God work through us over the next years (hopefully many more) that God gives us together.

Thank you!