Matthew on Stage? Eye update.

Matthew might be cast as a pelican, a sting ray, or even a shark. If so, maybe you might want to see his debut in a role within that deep blue world – coming to the stage this Saturday morning at 11:00.

First, I (Ron) want to update you on my eyesight. I last informed you that I would likely be having a second eye surgery this coming week, though I was at least a little tempted to try life without a lens in my right eye.

Big news! (feels monumental to me)…  I’ve made the decision (and all three of my eye doctors agree this makes sense) not to have the surgery. The story is long and contains details you probably won’t care about. (If you are a nerd about such things, let me know. I’m still fascinated and overjoyed with how it worked out.) Bottom line: I had a refraction (the test to see what my script should be), ordered glasses and two days ago they arrived. And, with those glasses I have 20/20 vision! In fact, my vision is so good, that it makes the vision in my left eye look slightly inferior by comparison – never “saw” that coming. I am still praising God (and will be doing so for some time) that my vision is this amazing and that I don’t need another eye surgery!

Back to Matthew…  For the last week he has been singing “Big Blue World,” “Keep on Swimming,” “Go with the Flow,” etc., in preparation for his Creative Pursuits Camp which begins tomorrow, culminating in a presentation of the Musical: “Finding Nemo Kids.” He couldn’t be more excited. I, on the other hand, find myself identifying with Marlin (the protective clownfish dad of the one with the “lucky” fin), not sure he is ready for the “drop-off.” Will he succeed at this? Will the stage be what he is made for? Or will he fail – he’s never done a week of camp (or a day of anything) without a dedicated one-on-one. Can he hang in there? He is so not ready for this. Or maybe I’m the one not ready!

Matthew will probably prove my hesitations to be without merit and the week will go fine. If so, I’ll send ticket info for the show.

Is it worth it?

-Lying in a messy diaper

-Listening to the horrendous cries of mothers while their 2-yr old sons are slaughtered

-Living in an obscure town in the middle of nowhere

-Learning and working the trade of carpentry for 30 yrs without a hint of notoriety

-washing the disgusting, stinky feet of 12 men who had no understanding of sacrificial love

-slaughtered on a cross on behalf of you and me who have little estimation of that cost

Do you think somewhere in Jesus 33 yrs here on earth, he asked, IS IT WORTH IT?

Without a doubt, the answer is YES! But He did not cave on His creation. Despite his humanity, He agape loved us. That kind of love is unconditional, underserved, majorly underrated, unearned, totally sacrificial and driven by compassion!

This was the parents lesson this camp week at Joni and Friends (camp for families with disabilities). And one that I keep rolling repeatedly in my head, especially now that our week is over.

Was it worth it?

-packing for two kids with many requirements, do I have all we need? Feedings, medical supplies, diapers, medication for every emergency we may encounter, clothing for all weather (ok, that one I didn’t prepare for)

-the jammed packed week with activities- some very chaotic, trying to keep up with 4 different programs as we all went our different ways, dealing with heat, bugs, downpours, anxieties, seizures, no lift system, different beds, food, and schedules

-mounds and mounds of laundry- very smelly in 100 degree temps

– the emotional crash of a child that has no idea how to self-regulate those disturbing hormones (and land that emotional plane) after being on such a “high’ all week

Lord, is it worth it?

So, I process many thoughts after our only vacation of the year. In many ways it is the only “heaven or earth” we will ever know. To have the help that comes alongside us to navigate our day’s activities and to watch true servants in action as they learn to know our kids and create life memories for them.

-Ron and I getting brief moments of quiet to rest, talk, sleep, read, enjoy nature and see the glory of God

-watching our kids on stage as they shine out their God-given talent

-developing lasting new friendships with people that get us

-eating 3 meals a day that I didn’t prepare

-hiking a mountain in a storm and seeing wildlife that doesn’t show up in my backyard

-but then there are those awful let down feelings that can’t be controlled, and behavior that is downright disgusting- the hard stuff

Back to the pastor’s words: Will I love them the way Christ loved me in my emotional, non-grateful, devastated, ugly lost state?

YES, of course I will- It is the only Hope, and they are worth it!

THE PEOPLE WHO LOVE BEST ARE THE ONES WHO HAVE BEEN DEEPLY LOVED AND RECEIVE JESUS’ AGAPE LOVE!

SHOUT-OUT TO OUR AGAPE LOVERS THAT MADE JAF CAMP POSSIBLE FOR US:

-Joe and Sima Weaver

-Judy and Steve Landis

-prayer team: Donna, Yvonne, Deb and many others

-Amy, Timothy, Matt Eby, Jon Niles who carried us through our week, making Kari and Matthew feel special and loved

-Jesus, who is helping us pick up the broken pieces and giving us the hope of things to come!

Light at the end of the tunnel

As a kid, I thought tunnels were neat, especially the tunnels on the PA Tpk. The surprise of the Blue Mountain was that, after exiting, in just 600’ we entered a second tunnel, under the Kittatinny Mountain. And these are long tunnels – .82 miles and .89 miles respectively.

As Joan wrote, the recovery from my May 22 eye surgery has been more challenging than we expected. The thing I hated more than anything was photophobia. Bright light felt blinding. Even overcast or rainy days were too bright for my liking. I often preferred being in darkness.

It is ironic therefore that I am happy to see the bright light at the end of this tunnel of recovery. Today (the first in eleven days) I felt comfortable enough to safely drive the two miles to Sky Zone (yes, Matthew loves to jump). Joan has been the family chauffeur at this time (according to her, I could see well enough to be a front-seat-passenger-driver).

Light, even bright light is not the problem. It isn’t harmful – not talking looking directly at the sun or at a welder’s arc. Photophobia is a symptom caused by some other problem. In my case from inflammation, irritation from the stitches and / or side-effect of the prescription eye drops. And photophobia causes an aversion to light in both eyes (not just the one with the problem). And my eyes refused to listen to me: “It’s okay. Take a deep breath. Nothing to be afraid of.”

It is tempting to shift into full preacher mode here: The light of truth is never the problem. Our fear / rejection of light and love of darkness lies with some fault(s) within ourselves. Freedom from photophobia and being brought into the light requires rescue. (Are there three points in there somewhere?)

Thankfully the photophobia is nearly gone. The inflammation is decreasing. I no longer need Tylenol for eye pain and am not taking quite as many drops as I have been. Beyond the light issue: Eye pressures remain low, and my retina is stable. My doctor says things are healing nicely.

One of the psychological challenges for me is knowing that, about the time I’ve fully recovered, I will enter the second tunnel of recovery from my July 15 surgery. I’m tempted not to go through with it. It is amazing how much I can see without a lens in my eye. Vitrectomy surgery in that eye 17 years ago increased the size of my eyeball – not great but happens to have a bit of an optometric benefit for me. Also, I’ve played with combining a right reader lens on top of my old prescription glasses – not ideal, but I’m close to 20/20 without a lens inside my eye. Who knew? (My surgeon laughs at my creativity.)

In the end, I’m more than likely to show up at the surgery center mid-July. After all, I do like tunnels, right? It is more like I’ve been through many eye surgeries, and so far, I’ve eventually come through amazingly well for what these eyes have gone through. Most importantly, God is with me – in and out of the tunnels.

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 8th or 9th 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