Free as a bird

Well maybe not that free, but being out of the hospital 48 hours after my surgery feels pretty good! Our whole family slept an hour after I got home, I think we all needed it! I am afraid you are going to find me flat on my back sleeping all the time, because I am just so amazed that I can do that! I haven’t done that in years.

I saw the surgeon 3 times while in hospital, and each time he said, “You were really a mess back there. I don’t know how you were walking.”

My prayer for the last few months was, “God, just hold my back together til I get to the surgeon’s table!” Apparently He did!

Now, I just ask you to pray for complete healing. And that I would be patient – adjective and noun. Joan

“Everything Went Well”

I’ve never heard a surgeon report anything other than that (it certainly is what every family wants to hear). In this case, we already have clinical evidence of success. Joan told me she isn’t feeling any pain or numbness in her legs! The incision site? Yes, plenty of pain, as expected. Sometimes nerves are so inflamed that a patient shouldn’t expect immediate relief – that’s what we were told. However, it seems that she is getting relief right away

The surgeon told me that things were really sloppy in there. In other words, it explains everything Joan has been feeling. And there is no doubt it needed to be done!

Joan is very tired, from surgery, from anesthesia, and from not sleeping all that well last night (for several months for that matter).

Hopefully we are looking at just a few days in the hospital, after which she comes home and has restricted activity for three months during which time the two vertebrae fuse together, with therapy to regain muscle strength beginning thereafter.

Thanks for all the prayers, words of encouragement, concern, etc.

Care-Giver to Care-Receiver

Three days. That is all I have left till I transfer to the above title. Scary for sure, but I think I am as prepped as I can be for my back surgery on Tuesday. All my preliminary tests are done, surgeon seems to know what he is doing, house in order (to whatever extent that can be), and I am mentally trying to set my mind on the fact that the next three months are going to be direct opposite of what I normally do. No bending, lifting, pulling, pushing, twisting-WHAT??? That is crazy! As a caregiver that is all I do! And lots of it. And instead of wearing the many “hats” that us moms of special need kids are used to; I must trade them all in for a bulky back brace. UGH!

Apparently, I have been walking around here with lots of “deep conversation” spewing out of my mouth lately as I do all my “last” activities – part of the mental gymnastics I keep going through. Ron reminded me that pain has a way of making philosophers of us all. Yup, I am sick of pain! So, to all you “pain-pals” out there, who endure the daily rigors of what I am going through, send your thots and prayer requests to me. I think I may have plenty of time to engage in some meaningful dialogue with Jesus over the next three months.

Many have asked me if the damage in my back is from all the heavy lifting I have done for years. The surgeon says most of my crushed vertebra is from the accident we had 10 years ago. Of course, the increasing pain and limitations over this past ten years has not been helped by the care that I do for my children. But even if it were the case that my injury is solely from caregiving, I would not change a thing. I do not regret the care I have given to each child and parent that have been in my home. I still believe that everyone, no matter how unwanted, disabled, or needy deserves love and care, even sacrificial care, because Christ reaches down and does that for me every day. It is the least I can do for others.

I am stuck on some verses from II Timothy 3:14-15 lately. “But as for you (Joan), continue in what you have learned and firmly believe… from early childhood you have known the sacred Scriptures which are able to give you wisdom for salvation through FAITH in Jesus!”

I firmly believe that: people are precious, scripture is God’s word, He will see us over another mountain, life is full of unpredictable scenarios, but God is never surprised, He is loving and strong! I will fix my mind on things above.

So, I am turning to you AGAIN for prayer. Our needs:

  • Surgery to be successful and recovery free of complications
  • Everyone to be healthy
  • Ron to have the strength of an ox and endurance of a marathon runner as he cares for us all.
  • Christ would be glorified once again in our weaknesses!

So, the best place to keep updated on my progress would be right here at this blog spot. Hopefully Ron will have a few seconds to give a report between his caregiving skills. He is taking off his job for the next number of weeks, that is the only way we know how to keep life sane around here.  And hopefully I will eventually be able to write as well. Pretty sure you won’t want to hear from me for at least two weeks till the anesthesia and pain killers wear off.  I am a hoot when I have them under my belt. In fact, some of you would probably rather hear from me then!  😊

Love you all, Joan

Surgery update

Joan asked me (Ron) to inform you of the latest.

She feels really confident that her surgeon is looking over x-rays and MRI very carefully and has a good plan in mind. There are three areas of concern on her spine.

1) Her neck. He believes it can be addressed with physical therapy. Yeah! 2) There is a spot on L2. It has not changed and he believes it isn’t causing any problems and therefore will just keep an eye on it. 3) L4-L5 is the problem, is getting worse, and definitely needs to be taken care of. Surgery is now scheduled for July 12 (moved up by a month).

Yes, her pain keeps getting worse and, although she doesn’t look forward to surgery, she is glad it is limited to just one area and is hopeful it will relieve the pain and get her moving again!

Thanks to all for your prayers.

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Yes, I will

I have a personal worship leader. Not many of you can claim that. But this dear friend has sent me a song every morning for over a year now to prep my heart for the day. She started it the first day of Matthew’s surgery and has never quit. She is amazing – she often will send me devotional thots from her heart as well. Every early morning my heart swells. She is a young mom who also does early mornings, so before the sun rises we have celebrated and praised our God.

I say all this because this morning’s song, “Yes I will,” got me thinking how much I need to keep saying yes to God, even in the darkest valley. It is going to be our theme statement as a family as we go camping in a pop-up this weekend (with possible storms??), but more importantly as I wait out upcoming interesting events of how our family will maneuver through another major surgery.

I have been meditating on, and doing a lot of, prayer lately: the supernatural ability we possess as believers – to have what is seen touch the heart of what is not seen. By faith we utter words, emotions and petitions before our heavenly Father, trusting He is absorbing each cry. And things are happening in the spiritual world we know nothing of because a mortal person made of clay has whispered. It is because of your prayers, I know, God will work all things out for this family who is very weak physically, but mighty in the Lord! Have a wonderful memorial day and especially to those who have served our country!

Surgery

The good news is that I (Joan) finally have a tentative surgery date – August 8. That still seems a long time to wait as I’m constantly dealing with pain, it interferes with my sleep, etc.

The bad news is that they aren’t sure exactly what the surgery will look like. There is this other spot farther up the spine. And newer symptoms I’m having means that spot also needs to be addressed. So, I’m off for more x-rays today and an MRI of my entire spine on Tuesday.

I’m thankful that my doctor is being thorough. They seem confident that they’ll be able to address all the issues that I’m having.

As always, thanks for praying!

Motherhood – the Dream and the Reality

Happy belated Mother’s Day to all moms out there.

Jeremy gave me a card yesterday, pointing out that my motherhood reality is surely different than what I had dreamed. He deeply honored me by expressing appreciation for my rolling with all that has come my way.

My mind takes me back to the bittersweet day Jeremy was dedicated at our church, the very day that would have been his older brother’s sixth birthday. But Ryan was not there as had graduated to heaven six weeks earlier. In hope for what God would do in Jeremy’s life, I committed myself to 1 Samuel 12:23,24.

“As for me, far be it from me that I should sin against the LORD by failing to pray for you. And I will teach you the way that is good and right. But be sure to fear the LORD and serve him faithfully with all your heart; consider what great things he has done for you.” NIV

Today those verses were part of my Bible reading. I am so glad I chose those for his dedication as I realize how they are being fulfilled – Jeremy and his wife Sarah serving God faithfully with all their hearts. That is reality.

Shifting focus to my other living son – today Matthew passed a test with flying colors. It was a retesting of fifteen activities – none of which he could do a year ago. Following surgery Matthew could not walk. He was receiving intense therapy at CHOP’s rehab, but we were discharged early so that I could be by the bed of my mom who was dying. Discharged with the understanding that Matthew must continue to receive intensive therapy. And so, I determined to keep the May 18 appointment at Schreiber no matter what! And I kept the promise, as hard as it was to do so. During Matthew’s evaluation he told the therapist that his grandmother died. “I’m sorry, when did she die?” “Today,” replied Matthew. She quickly looked at me, her eyes desperately asking me if he was speaking reality. I nodded. It was true. We had followed the hearse out of our driveway. All those memories are vivid to me today. But the sadness is overtaken by how far Matthew has come.

This was my first celebration of Mother’s Day without my mother or my mother-in-law. Very strange to not have someone older to honor, but my children honored me incredibly. And that is reality.

Within this year, with other major crisis events behind me, it was time to address something I had been putting off. I started to “doctor” for a back injury, the impact of which I could no longer ignore. I’ve now done everything advised (therapy, shots, exercises) with no improvement, only decline. Extensive testing is complete, and I await the date of surgery – the thing my surgeon told me five months ago is unavoidable. I appreciate your prayers for me (so many of you have been asking for an update – thanks for your concern). The continuous pain makes waiting difficult. I hope for relief and yet the surgery and recovery aren’t things I look forward to – it appears my summer won’t be the most pleasant. One thing I’ve found while waiting in pain, I’ve become more aware of those who need prayer, many of whom need it far more than what I do. That too is reality.

The sentiment of the card is right. Not all dreams come true. But what is also true is that some of the blessings of my present reality far exceed what I had hoped for! I am very blessed to be mom to my precious children.

The Best is Yet to Come

For most of us, Mondays usually get us down. The start of another week and the usual grind of life: work, school, responsibilities, weekend a long way off! But I am dancing in my heart today – not my body (more on that later). My little granddaughter smiled at me yesterday. She seemed overjoyed to share her smiles as I chatted with her. This was her first for me. As her parents said, “She can play hard to get!”  As you know, Elia has had a fight for life, but with great care from her parents, God pouring His love into her, she is an overcomer!

That little girl and I make a perfect match these days.  She loves to be held and I love to sit. My back pain is worsening as I continue to wait upon the Lord and LGH for a surgery date for my back. It is becoming harder to hide the need to sit or lay down or whatever it takes to relieve the pain in the lower half of my body. Hence the no dancing rule in play. But snuggles I can do with Elia’s low weight – she is like a feather in my arms compared to my other two children who also love to snuggle. 🙂 Elia is a great reason for me to sit.

“The best is yet to come.” For reasons that I don’t have time to get into, God whispered those words in my heart (many years ago during a very stressful time in my life). I have been reminded of that promise from Him many times since. It was a very hard 2021 for us, but there were hopeful things Jesus kept before us: The birth of our granddaughter (despite being given a very poor prognosis before birth), the continuing healing of Matthew’s body after major, major surgery, and more life for Kari with better control over her life-threatening seizure disorder. But in the midst, my personal pain is worsening. I am constantly reminded it is now my turn for improved health. And, as Ron reminds me constantly, my best is around the corner too!

I must take short, level-ground walks every day to keep my pain at bay. On Saturday, I didn’t get out until just before a storm was rolling in. The clouds were incredible, and some very large fluffy ones were backlit with the final burst of the evening’s sun, darkness surrounding them. You know the scene – we all have viewed an awe-inspiring landscape that took our breath away. For just a few seconds, I imagined Christ coming back for us in those clouds. He didn’t come, as you know. But once again I was reminded that “the best is yet to come!”  Just around the next bend in the road, the glorious bridegroom is coming for his bride. And if you have received Him as your Savior, He will sweetly invite us into His glorious world.  All this haunted brokenness, evil and pain will be over. His Kingdom come! Easter is a few weeks away, when the Christian world celebrates his resurrection that makes all this possible. In the meantime, as we wait, pray and hope that he will make us more like Him on this earth.

“Why are you not angry with God?”

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.

Home for Christmas

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)