Thanksgiving Eve doesn’t get the hype as Christmas Eve, but just the same I (Joan) want to take a moment to remind all to count our many blessings. Yesterday I had the incredible honor of keeping my granddaughter Elia for the day. She hangs out here a couple days a week, but yesterday was extra special because she was 11 months old, so we sang and did the happy dance and had so much fun that napping was not on the agenda. And since she will be with her other Grandma in MO over her 1^st birthday (yes, I do have to share), we lived it up yesterday!

Last year at this time we were barely breathing as we awaited her very high-risk birth. “Pins and needles” I believe we called it! Didn’t seem fair after having 3 special needs children ourselves that we were again in this precarious position of awaiting our first grandchild under such duress. But last Christmas we celebrated a miraculous birth and with each of her following check-ups we breathed a little easier. Elia is a charmer at 11 months, and we will never forget God’s grace on this family.

Of course, we have much to be thankful for this year. My back surgery and surrounding recovery going terrific, my brother Joe falling 12 ft face first on concrete and miraculous recovery, we are still a seizure- free home after 35 years of daily bombardment of those terrible “lightning strikes of brain,” and we have amazing tranquility in our home despite daily challenges of caring for 2 special needs children and their grandfather. Compared to the rest of the world we have an abundance.

Before Moses sent his Israelite crew into the promise land, he had some words of reminder: “There (in the promise land) in the presence of the Lord, your family will eat and rejoice in everything you have put your hand to, because the Lord your God has blessed you!” (Deut 12: 7) I love this encouragement he gives them to keep looking forward and see what is coming! So tomorrow, you can bet I will be eating and rejoicing with my family – celebrating the blessings in my own little “promised land.”

But I can’t stop here. Moses went on to contrast what the Jewish nation was experiencing at that very moment, “Do not do as we have here today, everyone doing as they see right in their own eyes!” (Deut 12:8) Ugh! So, our reality! Surrounded by evil, pain, and everyone interpreting life the way they want it and not seeking the face of Jesus for His truth and purpose.

I Peter 1:3 reminds us, “though we can not see Him, you believe in Him and are filled with inexpressible joy.” Yes, Peter, I am! And not because all is “right” around me but because God is still on His throne, His presence is nearer than if He was walking beside me. As we enter Advent season, I believe His coming is near. Like wise men of 2,000 years ago eagerly awaiting the Messiah, I want to encourage us all to be among the few who do not forget Who is about to come back – to be ready – to let my light so shine to attract others to Jesus and to be thank-full for this promised blessing! Happy Thanksgiving!

We recently had the honor of being guests on a podcast with Rising Above Ministries. Based in Tennessee, their goal is “lifting up the special-needs community.”

You can listen here: https://www.risingaboveministries.org/podcast/denlingers

For those getting to know our family because of the Rising Above podcast, you can continue receiving updates on our family story by subscribing. You’ll receive an e-mail notification with each new post.

I’ll start with a firsthand report from my sister-in-law…

“He is really doing quite well! We did dressing changes today, and everything is hemostatic, so I have been able to loosen the pressure on the wrap which definitively eases some discomfort. Swelling in his eyes is down, too. He is sleeping a good bit, but that is to be expected as his brain heals.”

He still has no memory of his actual fall, but we can’t stress enough what a miracle this is that he did not fracture his skull, neck or spine! I guess as a little sister, I always knew he had a hard head – but I had no idea I was related to superman! Praising and praying!

Joan

I would just like to ask for prayer for my brother, Joe Weaver. Twenty-four hours ago he fell 12 feet onto concrete apparently face first. He was found unconscious and barely breathing. But praise God had no internal injury- broken neck or other spinal cord injury. He does have a severe concussion and lacerations to his face and bleeding and swelling into his eyes that he is unable to open them at the moment. With time and rest, all of these injuries should heal. All we can say is, “Thank-you Jesus for sparing his life!”
He and his wife, Sima are physicians in Pittsburgh who both work at a clinic for the underserved. The clinic recently has had terrific challenges and are down staff. So this is another staff who is out of commission for awhile. They have 4 children, 3 in college and 1 at home, all of whom have been traumatized by their dad’s fall. Thanks for prayers!

Whooooo- hoooo! The x-ray of my spinal bone looks great! I can lift 25 lbs, I can crawl if I keep my back arched (look out Elia, the race is now on), I can bend and twist with moderation- mostly using my knees! I can walk as much as tolerated. My therapy starts Friday. My only disappointment: I have to wean the brace over next 7 days. I can only have it off 1 hour today, 2 tomorrow, etc. And my weakness may remain as much as a year yet😝. He said he made me better but not new🤔. Ron is delighted because he can go back to work.

So, this is week 10 in my rehab from back surgery and the pie in my oven is significant because it is part of my own therapy plan. I am allowed to do very little, and my back and legs are very weak which does not allow me to do much work in my kitchen. So, I have a test to see if strength is coming – trying to make my family a pie every now and then. The week 3 pie was a complete disaster. I think the week 10 pie may be the best yet.  Now the pie is sitting in the oven waiting on Ron to rescue it. Still can’t bend at all so Ron rescues everything around here. Lots of kid care, lots of spills that I do, lots of housework! He is an amazing energizer bunny and despite the pies (or perhaps because of my pies) he has just achieved 25 lbs weight loss! Way to go Ron!!!

I have 3 weeks to go till my x-ray, which hopefully WILL reveal that bone has now stabilized my spine. If so, I may be freed of some tough restrictions that have put me in this “sabbatical situation.”  I continue to have no pain, just incredible weakness in my back and legs when I am upright for too long. When muscles and nerves are cut and then not allowed to be used, weakness is definitely a thing! I reminded Ron last night that till I am finished with this – it will be a ¼ of a year of my life that has transpired! Putting it that way, he too thought it is a long time!

I am so humbled by many of you who stay tuned to my {Joan’s} ramblings. When I send a blog out, I sometimes even get hits internationally which always amazes me. Not sure who is tuning in, but I always want to make sure God gets glory for what He continuous to do around here. I spy him at work in many ways.

1. How he keeps giving us strength to carry on. Matthew is challenging us a bit these days with a nighttime routine of getting up a few times each night and being done with sleep altogether by 5 in morning. So, sleep in this rehab is a bit lacking. But we try to focus on the accomplishments and not the regression!
2. Our sweetest granddaughter keeps delighting us with her smiles and love and we just can’t stop praising God for this miracle child. She heads to CHOP tomorrow for another evaluation. Pray for her parents!
3. The only chair in the house that I can comfortably sit in, dubbed the “Queen’s chair” by Ron (no disrespect to an incredible true queen being buried today). I call it my prayer chair. During this sabbatical I have made prayer a high priority – almost to the point that I am afraid for how life will change for me once I need to get back to hands-on life again. But I cannot overstate enough the “I spy God at work things” I have witnessed in the last 10 weeks. My heart continues to leap for Joy with how the Holy Spirit led me in an encounter with a very needy young woman this weekend – a story I don’t feel free to share yet. I may never know why God allowed our lives to intersect but the whole thing was way beyond me. I just got to be the one who was Jesus’ hands.
4. Finally, my dad turns 90 very soon and I get to help organize a party for him. I spy God at work in my father, sustaining him in his single years after 66 with my mom. And I draw strength from that as I heal.
5. I spy all of you praying for our family, and I thank you!!!

So today we had a family fun day! In four days, Matthew heads back to school and Ron and I may be slightly celebrating! What a summer it has been! Though not exactly a summer vacation, I have decided that I should look at this time as my 3-month sabbatical after 36 years of full-time caregiving. Now I just watch Ron and others do what I hopefully will be back to doing in another 2 months.

Today we headed out as a family to watch Matthew play in his Challengers’ football league. His team is the Eagles. And they are awesome! Matthew had three touchdowns today and stayed focused the whole game without disappearing to find the potato chips. I think it had something to do with his big brother, sister-in-law and baby niece also there cheering him on.

Somewhere in the middle of the game, I noted that my eyes kept filling up with tears. I am now thinking that perhaps my hormones got messed up with this surgery. Tears seem to be flowing easily. If someone didn’t quite reach the end zone (didn’t matter which team) I would cry. If a touchdown was made, I also cried. Who is this new weepy person? Same happened when we headed off to a neighborhood family fun festival. Matthew was having a blast trying to learn to juggle with one hand, blowing coins out his nose with the help of a magician, sitting in a cop’s car while keying the mic for the PA speaker and telling his mother she is under arrest, and feeding a miniature pony popcorn. And then there were the giant inflatable water slides! Matthew wanted to try one out so badly! We sized them up and just saw no way that he would be able to climb the rope steps to get to the very top. We sadly said, maybe not this year Matthew. He did not cry or melt down, he just sadly walked away and said, “Yes, maybe next year!” And yes, my tears started flowing again. I hate having him now understand he has disabilities and hate seeing him being held back.

As we headed off to watch the magician again, a young lady came up to me and asked that, if she were to get permission from the slide people, would she be allowed to help Matthew to the top of the slide. Permission granted from both, and as all Conestoga Valley community attendees looked on with bated breath, and tears streaming down my face, Matthew and Nicki made it to the top! And down of course! The greatest slide ever!!

One more incident from family fun day. I had to ask a gentleman to help me push Kari into the shade while Ron was occupied with Matthew. He said to me, “You can’t push. I recognize what surgery you had – spinal fusion. Let me do your daughter – you should not be pushing her at all!” He recognized my fashion statement belt. His spinal fusion (same surgeon) was 4 years ago. He was a construction worker who got back on a roof top just a year after his fusion – and fell, shattering his hip and leg. Fusion stayed intact but having much pain in many areas. So, contrary to what I said in last blog post, I’m giving up the construction concept. Going to keep my feet on the ground!

Our family memory verse this week, “You shall rejoice in all the good that the Lord your God has given to you and to your house…” Despite appearances, we are full of the richness of God’s goodness! And I rejoice!

So my first post op visit was perfect! So much so that I can now start looking for a job.

Although I still have 60 more days of these very tough restrictions and wearing this fashion belt, what I have to look forward to at the end of my 60 day lockdown is ditching the belt and lifting 25 lbs which means… my GRANDDAUGHTER! (She is only 15, but that is 5 more than what I can lift now). Then after 3 more months (January) I will have no restrictions and can work construction! So apparently that is what this belt is all about – preparing me for a tool belt. Never did construction in my life, but I am told I will be able to do it then! So anyone hiring an old lady?

So just keep praying my healing keeps coming. I still need to eat a lot of protein and calcium (Milkshakes!). I fear I may look like a hefty construction worker by Jan, but as long as I stay healthy!??

On more serious side, I do praise God for His healing mercies and giving my husband the strength of an ox and endurance of a marathon runner. Maybe we make caring for special needs children and an elderly parent look easy, but most days it is not! Ron is working double duty by day and sleeps great at night! And I know that I only have 59 more days of this special quiet time before the Lord, to know Him in a deeper way and present some pretty heavy prayer needs before him. I even count it more of a privilege then working construction!

“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!!