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).

“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:

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

“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!

Today’s procedure to remove kidney stones was successful. We are so thankful for the urologist and the whole team at UPMC Osteopathic Harrisburg. They showed great interest and compassion and remembered us from round one (four weeks ago). And we are thankful for all of you who have been on our team for a long, long time and have been concerned for Kari and prayed for her. Kari has been suffering for months from this and we are very hopeful that, from this day forward, things will be better in this regard. We also have a nephrologist (kidney specialist) who is working hard to figure out how to prevent stones from forming again.

Praise the Lord with us for his goodness expressed to us in all of these ways.

I, Ron, was taking Matthew to the Bridlepath Equine Center for his therapeutic horsemanship session (worthy of a blog of its own someday). He was chilling after a full day of school and not as chatty as usual. My mind was mostly on my “Shoulder to Shoulder” (S2S) session that evening. S2S is a support group for fathers of those with special needs. I would be leading the group on the theme of “Courage, when life seems to be spinning out of control.”

I turned to Matthew and said, “Give me a definition of ‘courage.’” He immediately responded with: “Courage is choosing what’s helpful, right, and kind, even when it’s hard or scary.” I picked up my phone, opened the memo app, pushed the mic symbol, and asked him to repeat that definition. He gave me the same sentence. I would share it with my group that evening!

I didn’t know exactly what Matthew would say, but I knew he would have a definition. The reason? I had just passed a sign that said “CVSD character quality of the month: Courage.” It was already two weeks into April. Conestoga Valley had surely been repeating it to their students. I knew Matthew would have it memorized.

Four days later, Matthew and I were sitting in a pew of Trinity Lutheran Church on S Duke in Lancaster. Music For Everyone was presenting a variety of choral groups. I knew I was pushing it to bring Matthew there. It had been a full day. Matthew’s bedtime is 6:30 (also the starting time of the concert). I knew he would never last the whole thing. And yes, it was a struggle to keep him focused, quiet and not too rutchie (how is that word spelled – why doesn’t Word recognize it?)

Thirty minutes in, he turns to me and says, “That’s harmony.” I responded, “Yes, it is.” What I was thinking was a little different. “Well, duh. Understatement. Of course it’s harmony! The group singing is a barbershop type choral group (of the Sweet Adelines variety). You can’t pack more harmony into songs than what is done with this genre.” I roll my eyes and wonder why my son seems to always need to state the obvious.

But a few phrases later I am blown away as I realize what Matthew had just told me and I am humbled! It was “Harmony” – I glanced at the program to be sure – That was the name of the song they were singing. He instantly recognized the song! The significance of that? Neither of us had heard of the song until about six weeks earlier. We sang it a few times, watched a choral group sing it on YouTube, and then forgot all about it – at least I had.

We lasted another song or so but knew Matthew was beyond tired. We slipped out. As we walked to our car, I said to him, “I can’t believe you recognized the song, ‘Harmony.’” He responded by singing, “The time has come. Let us begin, with all our voices blending in To sing of love and brotherhood, And people doing what they should to… (he mumbled at this point but kept right on going perfectly with the tune and ended with) Harmony, harmony…”

I thought I was blown away when he “recognized” the song. You can imagine how astounded I was when he “replicated” most of the song. (Did I remember any of those words? No, none but the “harmony, harmony” part.)

Sometimes, like Mary, I treasure these Matthew moments and ponder them in wonder. Other times, I’m like Joseph as imagined by Michael Card when he wrote, “Joseph’s Song.” One line: “How can a man be father to the son of God?” Understand that, not for a minute do I regard Matthew as deity. Rarely do I see him as an angel. But there are times when I am overwhelmed and wonder exactly who this boy is!  

Picture Matthew as a sea (as in “ocean”) made up of much of what is normal boy, but with a strong mixture of brain damage, developmental delay, and disability. But in this sea, there are a few islands of above average (even exceptional) ability. One of these areas is music. Another is memory. At times he amazes me with some of his language skills.

Ron’s Song goes something like this, “How am I adequate to be father to one made in the image of God, but with both special needs and exceptional ability?” (doesn’t have the same poetic flow as Michael Card’s lyrics, but you get the idea)

I suspect every dedicated believing parent feels something of this. And yet, as a member of the Shoulder-to-Shoulder gang, I do feel an extra “burden” of being part of the process of helping my son be all that God wants him to be. I want him to connect well with his world. I want him to reflect God’s image and bring glory to him. I’m not always sure how to do that. Sometimes I’m overwhelmed, as I said. But mostly I’m finding it to be one of the most amazing and fulfilling challenges of my life.

I do feel the same burden of helping my daughter be all that God wants her to be. That takes a very different form – perhaps something I’ll share with you in the future. In any case, I will take any prayers for wisdom that you wish to offer up on my behalf as I keep singing my song!

Speaking of Kari. The second attempt to remove her kidney stones is this Thursday. Thankfully, in the last several days Kari has been feeling much better. We’re hopeful for a good outcome and full relief from what she has been feeling for months! Thank you for your prayers.

Before I (Ron) share the what and why for the above rating, let me give a quick update on Kari.

She keeps walking on the edge, which keeps us on our toes. For the last 48 hours we’ve been under a fever watch: “If her fever goes beyond a certain point, she needs to be hospitalized immediately!” Good news: For the past 12 hours Kari has been fever free! We’re breathing easier at the moment and very thankful. We appreciate your prayers.

* * * * *

I’m never sure how people are going to respond to my special needs children in various situations. I imagine most parents of special needs kids know what I mean.

This past Sunday I took Matthew to church. Because it was just the two of us, and because Matthew rarely gets to go to “big church,” we changed it up and went to the first service. Now here’s where I debated. If we sit near the front of the auditorium, he won’t be as distracted by everyone around him (since no one sits in the very front). But will he be a distraction to everyone else?

Amazingly he did remain focused and sang heartily and even hung in there with Beau’s entire message. I didn’t even have to go for the rescue snack food! Allowing him to highlight verse after verse on my phone was a big help. There were only two things. 1) the time when I pulled him back into the pew because he had the urge to dance in the aisle. And 2) in the middle of the sermon when Matthew suddenly stood up and pulled up his pants because he could feel they were falling down (just how far down had they fallen? – I cringed!).

Immediately afterwards, people started coming up to me, telling how blessed they were with Matthew’s enthusiastic singing. In the foyer a fellow ABF member came up to us with open arms telling us that Matthew had made his day. Later, a friend conveyed how she was in the balcony with her son who was so excited to watch Matthew. Okay, the whole place, at every level was indeed watching and thankfully also appreciating rather than being hindered in their worship. Phew!

Such has been our Calvary experience almost every time, Of course, there are the elderly who have panic on their faces when Matthew gets away and charges down the hallway. And there are those taken by surprise when Matthew is (without warning) in their face and wanting to be introduced. Hey, I get it. Who wants that?

Compare that with how Matthew is generally received at WalMart or wherever. Let Matthew do his thing there and the response is a little better than 50% favorable. And it’s okay. I get that too.

And then there is Kari. As you know, she needed an OR procedure the other Thursday. I often wonder what people will think at such times. “Why do they bother?” “Isn’t she using up limited medical resources?” “At what point will the parents say they are putting her through too much?” “Is her life worthy to be lived?” But I have to say the team there was great.

One response in particular: After introducing himself, one physician (the anesthesiologist) looked at Kari and then said to us ever so sincerely: “She looks great! Bless you!” And in those five words he told us: “She is precious. You are obviously taking great care of her, and I want you to know I value her and what you are doing for her.” At least that is how I took it. And that obviously meant a ton to me because I could have cried, I was so moved. And though we had not been to UPMC Harrisburg previously, in my book they instantly earned 5 stars right then and there!

No fancy titles or pictures – just in survival mode here.  Kari is still here at home. She is walking a very fine line from being hospitalized. She has a tube to drain all her urine, she is on antibiotics, I (Joan) am taking her vital signs every 4 hours and pumping her full of fluids, and praying she keeps it all down. But if there is any downward change at all in her status, says her doctor who is on vacation (called me this morning to tell me this) – at that point he wants her in the hospital.

She is fighting hard. She is an amazing child. As for Ron and me, we are working as a team. He has taken off work to be here to help. I catch bits of sleep when I can, drink coffee, and hug grandbabies to keep myself going.

And I feast on God’s promises. Latest one: Isa 40:29, “He gives strength to the weary and increases the power of the weak, even youth grow tired and weary… but those who hope in the Lord will renew their strength.”

Matthew’s mouth and tooth are doing well – he is on a soft diet till they can cap the tooth and gum heals. My dad goes with the flow, enjoys his sunshine, and takes walks since we all seem occupied. 😊

Keep praying. I may be a bit sluggish in responding to texts, or emails, but I sure do appreciate hearing from you and know that you care for our beautiful girl!

The last five days for Kari (and the rest of us therefore) have been tough. Kari has been in a lot of pain and figuring what helps more than harms has not been easy. Forty-eight hours ago we thought we were in a better place, but then she spiked a temp today. Long story short: Kari spent the last four hours in the ER, getting hydrated, evaluated, put on an antibiotic, etc. She is still somewhat restless / uncomfortable. Joan is still there with her now, but expects to bring her home this evening. We take her to a hospital outpatient appointment tomorrow sometime for a follow up.

And, just before Kari spiked that temp we got a call from the school – Matthew had chipped a front tooth on the playground. After seeing that Kari was getting settled in at the ER, I took Matthew to the dentist. Fortunately the tooth is stable and can be recocnstructed. Jeremy and Sarah stepped right in and helped while all the needed transitions were happening (as well as taking care of dinner and keeping things as normal as possible with needs met).

Thanks for your prayers. Oh and one request. I know that the evening is far from over for us (Joan especially). We will give you an update soon. Thanks for waiting for that.

The thing you expect to hear from the surgeon following a procdure is: “Everything went well.” Today we heard: “Results were mixed.” He was able to remove the bladder stones, but couldn’t get the camera up into the kidney in order to remove the troubling stone there (happens 10% of the time). He was able to insert a stent to begin to open the ureter enough for the next time. In short: Kari needs to return in 4 to 6 six weeks.

Our thoughts…

Disappointed that Kari will have to endure more pain (already dealing with this since January, or earlier for all we know).

We were looking forward to moving forward with the next step of stone prevention. Can’t do that without a stone sample (bladder stones don’t count).

We really want Kari to be able to cruise without pain. Can we get there before we embark early June?

UPMC Harrisburg staff were great – felt well cared for. In recovery the nurse asked Kari, “Do you want to see your mom?” Kari gave a big smile. So, as always, Kari is amazing.

We just came home and now Joan is hard at the task at helping Kari finish recovering from today’s procedure.

Pray for her over the next few weeks: to endure the pain, no complications from today’s procedure, patience for us all. Thank you!

99 days! Til what you ask? That is the countdown until we take our family on a cruise to celebrate 40 years of marriage. And to us, this is a BIG deal! We love the life God has given us, the children and grandchildren and decided to take a big dive and celebrate what God has “joined together!”  So that is the good news in the Denlinger household. Matthew has been sharing this with anyone he encounters, so I figured I should get the word out too.

The bad news is (and this won’t come as a surprise if you’ve heard some of our recent history) we have much to accomplish health wise before this trip. Kari saw her second urologist today. She has been battling kidney and bladder stones. So good news on her end is that stones shifted giving her relief, but we need to get them out before any blockage occurs causing her intense pain. Hopefully within the coming month that will surgically happen without complication. In the meantime, she needs to see a kidney specialist for help in understanding why she is such a rock-maker. We call her our “Rock Star.”

And over this past weekend she developed another problem that we need to pursue as well. Just a tad overwhelming, but in the larger scheme of world problems, I guess I am grateful that our issues seem small. Just asking for prayer that we will be able to fulfill our dream of this cruise. Ron already told me that he has as a back-up plan – a night for him and me to stay at the “Fulton Steamboat Inn” (3.4 miles down the road). Haha Oh, do pray that we aging people get and keep our health!! Thanks- Joan