“Leads us to repentance” is what scripture says (Rom 2:4)! It also causes me to rejoice.

As I plodded down the road this early morning on my first short walk of the day, I praised Jesus for how good I felt – only two weeks post operation. That terrible nightmare pain that I had been living with for so long is gone! It is so hard for me to believe. And now I have gone over 24 hours with no pain med (not even needed for pain from surgical site). Back muscles are still very weak and my BLT restrictions (no bending, lifting or twisting) remain for two and a half more months. But to be living without pain creates a new me!!! Jesus is kind to me.

And all of you (Jesus’ body) are so kind! Thank you for the encouraging notes you post, text, and put in the mail. I read them over and over! Thank you for food that is showing up in abundance at our house! Thank you for the many prayers on behalf of us all! Thank you hugely to the folks who come and care for Matthew and give Ron and me short brakes from his energy! It definitely takes a Christ-community to help this family!! THANK YOU

Last year we had “team Matthew” to help us through his massive surgery and recovery. Yesterday the five of us here became “team Elia.” It was our incredible privilege to care for our seven month old granddaughter for a few hours. It is hilarious and fun to see how it took all of us, including my almost 90 yr old dad to do it. She loved it. She thinks there is much activity in the house and finds it fascinating! And it brings healing to my bones!

I am praying for many of you. I have a lot of time to do that. And one last interesting thing: A little boy named Austin from Chicago is getting my prayers. He is three. And he and Kari are two of the 50 in the world who have RARS2. Mixed emotions for the little guy. Sounds so much like Ryan. I read my book again recently to remember that very long time ago when I was a young mom dealing with so much heartache. I never want to forget the kindness of the Savior who carried me through then – just as He is doing now!

Today’s goal for me: Make sure Ron is taking deep, cleansing breaths. He has a lot to manage around here. At 5:00 AM he teaches Spanish to Matthew. At 6 he starts breakfast and medication routine. At 7 bathing and dressing the kids and himself. At 8 he left with Kari for CHOP Philadelphia. (More on that later) At 3PM he arrives at home and gets Kari settled in her bed. At 3:15 PM he whisks Matthew out to car for CHOP Lancaster appt. At 5 PM he arrives home for dinner and to breathe before heading to pharmacy for medication. Then home for Kari bath, Matthew bedtime, and take a moment to find out how his wife is doing, put Kari to bed then crash himself – before a new slate of activities begins at 5 (Matthew’s wake up)! Ron is my hero!!

This crazy house is definitely sustained by the grace of Jesus through family and friends of abundance, a bunch of laughter and all 5 us (including my dad) now getting sleep at night!

Every day my pain is lessening, the excruciating pain pre surgery is gone. The pain from surgery is improving and I can sleep!! Tomorrow is my first post-op appt and then (drum roll please) I can shower! Oh a blessed day that will be! Now the limitations of no bending, lifting or twisting are still heavily upon me as is wearing my most fashionable back brace for another 2 months and 3 weeks – but hey – with the thought of a new back, I am willing to obey!

More on Kari (as promised above): As you know, 15 months ago we got a diagnosis for her and our son Ryan. At the time there were around 25 others in the world with this diagnosis. Now it is double that. Apparently there are a few others in the USA: Washington DC and Chicago areas. But Kari remains the anomaly with her being the longest living. In second place are four in their twenties, and sadly, most dying in childhood. So of course, research at CHOP is staying in close contact with our family. And today we received info on how we might connect with other families with the same disease (a process that probably won’t begin tonight with limited brain cells after a very draining day).

The info Ron learned today is very exciting to us. We keep getting more pieces of a very large puzzle – a picture we’ve been trying to see for the last 35 years. To see it slowly emerge is energizing to us. We are very aware that it won’t be until heaven that we see it perfectly and with unveiled faces – Jesus in all His glory and how we fit into His story, but for now we are amazed. We laugh and we breathe!!

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

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.

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

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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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!

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!

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.

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.