The ship is coming

Night time is the darkest, but the most sacred. I will give a peek into this Mama’s heart that is in agony as I cut the final string of my firstborn child.

Kari is seeing that distant shore for which she will be boarding that ship coming for her. I can only watch and wait and hear the sounds of her panting hard as she runs from this earth into the arms of Jesus. She has run the race, she is finishing the course set out for her. She has NEVER complained she was cheated in this life. She embraced every moment. And she will win the prize.

I can’t cut in and demand she stays with me, just because my heart is broken. I know it will heal, and I pray that you all give me time. My tears are no indication I am angry, bitter, or hopeless! They are tears of joy that I gave birth to this child who I will be able to spend eternity with. And just because this is not Ron and my first “rodeo” with watching life slip away from a child, does not really make Kari’s dying process any easier, but I must admit we both have more courage and treasured assurance that God is here and will get us through,  once again, this “valley of the shadow of death.”

Every word of encouragement, note, phone call, the incredible meal schedule, and prayers that you all have been pouring out on us is so appreciated. I can not thank you enough!

Many have asked about Matthew. He is doing OK. When we told him Kari is dying, he sat there a moment. Then looked at Kari sleeping in my arms and said. “Kari are you gone to heaven?” Without even a second of hesitation, she raised her head, looked in his direction and gave the biggest smile we have seen in years, and conked right out. Matthew giggled, looked at Ron and asked if he could go play Nintendo. Aww my TBI boy! For him, he is grieving just the way it makes sense in his brain. The tears come and go!

Keep praying!

Journey’s End

Kari has been in many hard places. Over and over, she has come through life-threatening illnesses. This time, she will not recover. For weeks, there have been signs that are clear to us now.

In the heart of covid, we nearly lost her, but God brought her through and gave her five more years of life. And we received the gift of a diagnosis, learning that no one in the world is known to have lived as long with her genetic deficiency. 

It has been hard to accept the reality that we are coming to the end. We’ve been delaying this news until we are completely certain. It is extremely hard to let her go. But we can’t keep her here. It is the end of this journey, but not the end.

We’ve always wanted to care for Kari. And we couldn’t see her outliving us. And so, we take comfort and encouragement in God’s answering our prayer, that we could see her to journey’s end.

Joan and I have needed time to come to accept and begin to process this reality. Now that we’ve broken this news, this will be the place where you will find updates. Thank you in advance for your prayers, compassion, and comfort. We will welcome and treasure every expression of care. We will respond as we are able.

* * *

Some of you are familiar with Alfred Tennyson’s poem, “Crossing the Bar.” The following are similar words about anticipating death.

Lay down
Your sweet and weary head
Night is falling
You have come to journey’s end

Sleep now
Dream — of the ones who came before
They are calling
From across the distant shore

Why do you weep?
What are these tears upon your face?
Soon you will see
All of your fears will pass away

Safe in my arms
You’re only sleeping

What can you see
On the horizon?
Why do the white gulls call?

Across the sea
A pale moon rises
The ships have come
To carry you home

And all will turn to silver glass
A light on the water
All souls pass

Hope fades
Into the world of night
Through shadows falling
Out of memory and time

Don’t say
We have come now to the end
White shores are calling
You and I will meet again

And you’ll be here in my arms
Just sleeping

What can you see
On the horizon?
Why do the white gulls call?

Across the sea
A pale moon rises
The ships have come
To carry you home

And all will turn to silver glass
A light on the water
Grey ships pass
Into the West

(“Into the West,” by Fran Walsh, Howard Shore and Annie Lennox)

The Show is On!

Matthew had a great first day of drama camp and last night we learned he has been cast into two roles: Professor Ray and Gill. Neither are lead roles, but they are both leadership roles (fish who are in charge of others) and that suits Matthew very well. He has many lines and solo portions of a few songs. Our cconfidence about his doing well is growing.

A bunch of you are asking how to get tickets for the show this Saturday, location details, etc. Click here . Note: You will need to “select a date.” Choose 11:00 AM – 11:45 AM. Thanks for your support of Matthew. Please don’t feel obligated.

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!