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

I know you have heard the song, Jesus Loves Me – probably since a child you have known it.

                                               Jesus loves me, this I know,

                                               for the Bible tells me so.

                                               Little ones to Him belong.          

                                               They are weak, but He is strong!

                Yes, Jesus loves me. Yes, Jesus loves me. Yes, Jesus loves me. The Bible tells me so!

Matthew can play it on his French horn. We sing it often. The message is profound. It refers to us all whether we recognize that we are children compared to the Almighty. And we are weak compared to His strength. But I leave all that theology for someone else.

But I bet you have no idea who wrote these lyrics and the reason she wrote them. Anna Warner is her name – lived during the Civil War. She was a contemporary of the greatest American poet, Henry Wadsworth Longfellow. But she, kind of like me, was a little-known author 😊. But her sister, a novelist, included Anna’s poem in her book about a dying child. The poem gave comfort to the boy as he looked forward to heaven. And the poem became a song, and the song went viral!

I just learned this information yesterday, when out of the blue I asked Ron, “Who wrote that song?” And being the good informant, googled and woo-hoo, we got our answer.

It was a profound story to me, because of my present activity. For 11 years I have been part of a ministry that writes notes, three to four times a year, to bereaved parents. I was working through this process, feeling deeply grieved for these parents (especially so this time of year). How does one encourage those who are feeling painful loss? Again, the subject of dead and dying children up against an Almighty, all-powerful, all-loving God – not one I am going to tackle here.

But I come back to the above lyrics. I put my trust, my mind, on things above. God loves. God knows. God cares. He is Strong. I am not! As I contemplate the God who was willing to put himself in the most vulnerable spot in our world – a womb, I can’t deny that He loves me! And He loves the precious parents who can’t see past their own pain to the hope of Heaven. Pray today for the people in your lives who are grieving this Christmas season. Not everyone is “Merry and Bright”.

Twenty-nine years ago, we engraved on our son’s tombstone: “Little ones to Him belonged.” We had no idea it was written to encourage a little boy just like ours. Amazing! It did just that!

Joan

Everyone knows what a full stomach is. But do you know what a full heart is? I learned the term years ago from a 20-something when I was 40-something. He was a bit more artistic in his thinking than I. He had just returned from talking to “a woman on the street” about Jesus. It was Christmas time, and he was filled with awe that God would give him this opportunity to share LIFE with one who was so despairing. “My heart is full!” Signifying there was nothing that could make life more meaningful for him. He was satisfied, complete, confident that there was nothing that could give him more joy!

I loved that guy. And I wanted to emulate his joy and figure out how to live more that way. My life didn’t seem as carefree, flexible, or winsome as his. I was a mom and pastor’s wife, traveling the country, serving in multiple churches (read Faith in the Heartland if you want to know more),tied down to a busy schedule, the demanding routine of caring for a severely disabled teenager, and homeschooling an elementary aged boy. Life was full alright, but not in the way my friend felt it!

Well let’s just say, maybe its because I am 20 years older, walking closer to Jesus, or perhaps just losing some of my “rigidity” now that senility is setting in… But I walked out of my church on Sunday afternoon, looked up in the heavens and said, “My heart is full!” With a smile on my face and a heart that was dancing the way my friend was 20 years ago. Yes, even with a gimpy back, I did a little two-steppin’ jig with my son beside me and Kari rolling by my side.  I had just experienced the joy of Christmas and I was complete, satisfied, and confident that, even if everything else goes wrong in the next two weeks, I’ll not have a need.

I know you are wondering “so what is she up to now?” Well, I had just completed a four-hour Christmas celebration with Kari’s Shepherd’s class friends at Calvary church. It was a blast! Ron and I help in the class twice a month and this was our Sunday to serve. The class was rocking with excitement as we led them through the story of the paralytic man who was healed by Jesus. Kari got to be highlighted in class because she was the only one who is a “paralytic” – not able to move without help. But the miracle-working Jesus got the class excited as they all have something they are eager to have healed by Jesus. I sat in awe as I listened to their excitement of the hope of heaven. In fact, the young adult beside me could not get done talking of the new Jerusalem. We wrapped up the topic with intense prayers by the students for each other, ending our time with a rousing song. I am sure heaven was ripped open and angels came down in that classroom, dancing for joy with us.

Let me break for a moment. Bear with me. As a mom who has, for 37 years, carried an enormous amount of weight on behalf of my children (even watching one die and handing him over in the arms of Jesus), it has been torturous and a long road. Even now I am tempted to cry out, “Oh God, why does my daughter have to endure so much? She can’t move (unless I move her), she can’t speak, she can’t see, her bones are weak, and with muscles contorted. She sits and sits and pushes through more pain than I can imagine! How long oh Lord, how long?”

In the silence, God whispers to my heart, “Joan, my grace is sufficient for her. You don’t need the grace like she needs it. I have filled her up, I have made her complete, her reward is coming. Trust me and keep caring for your daughter, knowing she is one of the “least of these” in your world, but in mine she is the apple of my eye!”

“Oh, dear Jesus, I never saw this before. Yes, I know about the grace you give me when others can’t see how I do what I do. But do I really think I have the corner on that? Grace, just for me? Oh no, child! Look at your daughter! She has bucket loads more than you’ll ever know.”

So, when I walk out of a four-hour party…  Yes, on Sunday after class, we then partied for 3 more hours!  After having spent time with Kari’s friends, who know a whole lot more about the grace of Jesus – they don’t hold back. No filters, no pride, no competition, just pure joy. I am a humbled woman with an overflowing heart of joy. These crazy 20-something kids in my life sure have a lot to teach this stodgy old lady.

We ended the party with Matthew (he was allowed to be at the party because of his sister and parents who help) leading us through four verses of Silent Night. He asked the attendees to sing the song peacefully. Apparently, “peacefully” (to people who experience Jesus with no filters) means looking up into the heavens and singing as loudly as you can. I expected that maybe Christ would come – the second Advent upon us!

Merry Christmas everyone and thanks for listening to my full heart!

Joan

Elia means, “God answers prayer.” Her mother and father couldn’t have given her a more appropriate name. God has been faithful to sweet Elia who will be 2 years old in two weeks. Once again, we come to our prayer friends and ask you to continue to plead for our precious granddaughter.  After waiting over two weeks while the cardiologist at CHOP evaluated the MRI results of her heart, yesterday her parents got the call. Her little heart has a need – one that was not expected. The area they thought was going to need fixed is doing well, but the MRI revealed another anomaly that will need open heart surgery before Elia turns 4. We are relieved to know it does not need immediate attention, and for that we rejoice!

This needed repair grieves our hearts, as you can imagine. Keep our sweetheart Elia in your prayers. Jeremy and Sarah will meet with the Cardiologist in February to get more details and of course they have many questions. As Sarah said, “God has been faithful to her this far. He will continue to be!”

I am hanging on to our Lord Jesus’ mother’s words, expressed before Jesus was born: “His Mercy extends to those who fear him, from generation to generation.” And that is us!

“Thank you, Jesus for your great mercy that extends to each of us in our difficulty this Christmas! You have won the battle!”

“Oh taste and see that the Lord is good!”

Today is Halloween. Many of us will be handing out treats and enjoying special tastes. No tricks here at the Denlinger home.

We came through the month of October savoring the goodness of God! Kari turned 37, Matthew just celebrated birthday 11- his style: eating at McDonald’s! And two days before his birthday, we were incredibly blessed with the birth of granddaughter #2. Lucy is doing great – day 4 and already celebrating Halloween in pumpkin outfit. Our pictures say it all (see below)!

In September, I (Joan) had a prayer service for all four of my Denlinger ladies. Each one going through unique times. I also asked you to pray. Here are some results.

#1 After seven months of pure misery, Kari is finally getting relief through neurological changes and PT. We have our daughter back again!

#2 request before God was for Sarah, that she would be able to have a regular birth experience after her emergency C-section last time. Although it was not easy, God helped her deliver little Lucy with no complications! Sweet!

#3 request for Lucy – born healthy, strong and beautiful.

Big sister, Elia is agreeable to her new baby sister, but as her personality dictates, she is being a little cautious about how much attention that wee one should get. And in the meantime, please keep prayers going for her, as the jury is still out on how soon her heart surgery may be. Stay tuned, and pray for wisdom for her parents! And for Ron and me in our support of them.