Joan was asked this question again, yesterday, for the fourth time within the last week or so. And so, Joan has been giving some thought to the question. And, she has given me permission to share this with you and offer some thoughts.

Before we give any answers, we wonder why the question and why now? Not sure we’ve been asked it before, and certainly not four times within a short time. In the past we’ve been asked things like: How do you do it? How do you go through all the hospitalizations? How do you keep having joy? How does your family keep having hope? How do you keep going?

Behind the older set of questions is the assumption that our life isn’t always easy, that there is pain and that there are disappointments. True! All of those are true.

And what is the assumption behind the present question? Are we supposed to be angry with God? Is that the most natural thing to do? Does it presuppose that God has ripped us off, that he is unloving and unfair? Is there something wrong with Joan that she is not angry with God? Or are the questioners simply looking around and observing that most people in similar circumstances are angry with God, or if they themselves experienced what we do, would probably be angry with God?

One assumption behind the question that is certainly correct is this: Joan is not angry with God. To that I can testify. She’s had lots of questions for God over the years. She has not hesitated to direct them to the Almighty. She’s been better at prayers of lament than anyone I know. Maybe that is part of the reason she isn’t angry. She doesn’t tend to let things fester and she comes to terms with things as they are.

Joan also resonated very much with the words of Peter recently (that is, Peter was quoted a few Sundays ago in a sermon at our church – a series entitled “When in Doubt”). Peter said to Jesus, “Lord, to whom shall we go? You have the words of eternal life, and we have believed, and have come to know, that you are the Holy One of God.” Though Joan doesn’t always like the way things are, what are the options? If she gets mad at God and cuts him off, what is left? He is the one who gives her life and joy.

“Why aren’t you angry with God?” Joan noticed that she has been asked the question when Kari has been by her side. “How old is Kari,” they ask. 35 years old. That is a long time to live with disappointment and to see Kari somewhat trapped within a body that doesn’t work well for her. So, maybe Joan wasn’t angry at first, but after all these years and the hope for a miracle behind her, maybe now would be the time for resentment to build? Maybe. On the other hand, even more reason to be grateful that Kari is still with us and that she keeps bringing us joy.

I will say this, and Joan said I am also free to share this… As time goes on, some things are getting harder for her. The issue is physical pain – sometimes unbearable. She needs back surgery. It is something that shouldn’t be put off much longer. Her back is her Achilles Heel. If she were to fall or have some other accident, she would be at high risk for permanent damage.

Her need for surgery may date back to an auto accident we were in ten years ago – hard to know for sure. All her hard work as a caregiver may have aggravated things and brought her to this point sooner. And then it took some time to come to terms with the idea of undergoing back surgery. But she is there now and if she has any remaining doubt, it is quickly wiped away by frequent searing pain followed by weakness and numbness!

Does all that drain her? Yes. Is she a little grumpy and less tolerant of the antics of the rest of us? Sometimes. I must be honest. 😊. But, even with physical afflictions added, and though it often gets to her, she still isn’t angry with God. Mostly, she is joyful. She is a WYSIWYG (what you see is what you get). If you didn’t notice she is in a lot of pain from time to time, it’s because she doesn’t tend to show it – either in public or at home.

So, when is the surgery? Don’t know. Elective surgeries like this aren’t being done right now. With the slowing of the Omicron variant, we’re hoping that will change soon. But even then, Joan is on a list with thirty-five others – that is just this surgeon’s list! And I’m thinking that when operating rooms begin to reopen for people like Joan, every surgeon will be jockeying for time in those cool, sterile, well-lighted places.

Pray for the preservation of Joan’s back in the meantime and that she’ll continue to be able to bear with her pain – she doesn’t seem to have a different choice right now. And pray that when the time comes, surgery will be a great help to her.

Sarah’s words are so beautiful that we’re going to let her share the good news…

As I sit here waiting to be discharged I can’t help but remember the fears we’ve had over the last few months… not knowing if I’d ever kiss my baby girls face, feed her, sing to her, or bring her home… “God is good all the time” is what I kept telling myself though when I imagined the worst possible scenario obviously that is a tough thing to believe! But Jeremy and I kept reminding each other of the fact that our girl kept defying the odds and God kept sustaining her each day. Now, with my baby down the hall waiting to go home with us, I am completely in awe of Gods goodness and mercy…this girl is such a gift- the best Christmas gift I could ever have imagined! Thank you all for your constant support and prayers! It’s amazing to see all the people coming around us – a lot of whom I don’t even know! You all are incredible and we can’t thank you enough. 

We hope you all have a Merry Christmas!

-The Denlinger’s (Jeremy, Sarah and Elia)

Joan had the great joy of spending a few hours getting to know her granddaughter this afternoon. Can you tell she had a good time?

Jeremy wrote in their caring bridge blog that there were some terrifying moments last night. He wasn’t overstating it. They’ve been told that the placenta was terrible, the umbilical cord very thin, the amniotic fluid low and the heart was decelerating. These are all things that can go with Turner’s that might cause the last few weeks of a pregnancy to be very high risk. And with all those things true for Elia Joy, the staff at CHOP are amazed at how well she is doing. We praise the Lord for CHOP in making the right call last night and also for Dr. Bayliss in Lancaster for his accurate diagnosis and level of concern.

In other words, there is a whole lot behind that smile of Joan’s.

We feel like we can’t say it enough: Thanks for all your prayers.

Journal Entry by Jeremy Denlinger 

This has been a great day! 

1. We got the report just about an hour ago that her heart is looking great and the cardio team doesn’t believe surgery will be neccessary! She is being downgraded from the CICU to the CCU (not exactly sure what those acronyms mean,  but it’s good)

This very well may mean she is coming home with us when Sarah is ready (Christmas??)

2. Grandma D got to meet her and hold her for about 30 minutes. There were a lot of smiles!

3. We are ready to share her name with you all! Introducing: Elia Joy Denlinger!

Elia (Eh-lee-ah) is a derivative of Eliana which means God has answered. Sarah and I decided on this name before we even knew that this baby was going to require so many prayers. So having Elia’s name already etched in our minds and hearts was just an awesome reminder that God would answer us. That’s where her middle name comes in, God has answered, and his answer is Joy to the world!

We get a small taste of what that Joy can look like today as we look into our baby’s sweet eyes. But at this time of year we are also reminded that God has given the answer of Joy to the whole world in His Son Jesus Christ!

I confess I’m quick to jump to prayer when terrifying moments are happening like some things that happened last night, or throughout the past weeks. But I was not nearly as quick to jump to prayers of gratitude this morning as I was holding my baby. So join me now in praising God for this sweet gift to Sarah and I, and his answer to our Prayers, Elia Joy. 

– Jeremy and Sarah

Baby girl Denlinger was born this morning (12-22-21) just after midnight. She weighed in at 5 lb 5 oz. Second prayer of strong lungs seems to be answered. There is one more specific prayer request – that she won’t need heart surgery. The nurse they spoke to about it last night said everything is looking great. There will be a cardiogram today.

Thank you for rejoicing with us,

Grandpa and Grandma Denlinger, Aunt Kari, and Uncle Matthew

PS If plans hold, grandma gets to see her this afternoon.

Jeremy and Sarah are posting their baby story and updates at the following site. https://www.caringbridge.org/visit/babydenlinger

You can also be sure that we’ll be providing some summary updates as well.

There was room at the inn for the young couple with child (translated: Jeremy and Sarah are now in Philadelphia where they found an opening at the Ronald McDonald House).

And while we wait, hoping and praying that all will be well, here is something that Ron has been thinking about…

I, Ron, had to laugh when I read this headline the other day: “The universe is expanding faster than it should be.”

“How dare the universe disobey?” said a leading astronomer. “It is frustrating that the cosmos is out of line with how things should work.”

Lest I mislead you to believe that the scientists thought such things, the fact is that National Geographic simply wrote a poor headline – poor, in my opinion, because it can be easily misinterpreted. No one really thinks the universe is bad. Instead, the content of the article makes clear that the scientists are humbly realizing that their predictive models are flawed – there are factors that are missing.

We, by contrast, do indeed act as though the universe (or at least the world) is misbehaving because things don’t go the way we think they should. How many times people say, “this isn’t the way it should be.” It isn’t normal for a child to precede his parents in death – that isn’t the way it is supposed to be. Retirement should be a time to be able to travel, not for a man or woman to be tied down caring for a spouse who has had a stroke or who is experiencing Alzheimer’s. (And that is just my beginning for what could be a long list of things that don’t unfold the way they “should.”)

If we lived in a perfect world, we would be right. Those who expect the world to “behave” are missing a huge factor that make things the way they are – sin. This is a broken, fallen world. But it is also a world in which God uses even broken things for our good – the good of making us more like his son. And in that there is hope. And there is joy that comes when we accept those things that God won’t change (at least, won’t change now). And there is great joy in knowing that God more than countered when he added another factor – sending his son as a human baby, who would offer his life, leading to the eventual creation of a new world where all is well and as it should be.

One more thought: Despite how broken this world is. It is amazing how often things go well. Which leads us back to thanking you for praying with us that our other requests will also be answered in the affirmative.

Baby girl loves to sit on that edge. After lots of testing, doctor debating, pros and cons, ups and downs, the decision was made, and Jeremy and Sarah are heading home from CHOP. Cardiologists are saying heart seems stable and they would like to give a little more time for her lungs to develop.

The plan: Headed back to CHOP on Monday to stay. Baby will be monitored every day and projected to be born on or before Christmas.

Pray that a room opens for them at the Ronald McDonald House, lungs will develop and that (miraculously) she won’t need open heart surgery.

Sarah’s doctor says that our granddaughter is small but stable. Sarah and Jeremy are headed to the Children’s Hospital of Philadelphia (CHOP) for more tests this Thursday. Their doctor here says they should be prepared to stay, and in either case they will have a baby before Christmas – born at CHOP, with the possibility of needing heart surgery.

It is a little difficult to know exactly what Christmas will look like this year. That’s okay. What matters is that the baby remains number one priority. I suppose that isn’t a bad mantra for any Christmas – the baby is number one!

In other news, Matthew did a great job in his part of Christmas celebration – he was in the kid’s choir at Calvary yesterday morning (green shirt, far left). He continues to make progress in just about every area. CHOP did a great job of sharing the story of Matthew’s neurosurgery and the outcome. It is posted on their neurology website.

Finally, Joan and I celebrate that it was 40 years ago today that we went on our first date. It was a Sunday afternoon performance of Handel’s Messiah at the Academy of Music in Philadelphia. (And have you noticed that Philadelphia seems to be a big part of our lives?)