Final Fling

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!

Looking for construction job

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!

The Kindness of the Savior…

“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!

8 Days Post-op

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!!

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!


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!