Author: Mark Jones (page 1 of 8)

New Normal

Since Lori passed away, the kids and I have spent a lot of time at the house trying to find a new normal.  I’ve decided that for a long term care plan, I’ll use a preschool near my house that comes highly recommended.  Claire will attend full days of school at the elementary school, JM will go half day to kindergarten and half day to the preschool, and Jude will go full days to preschool.  However, they won’t begin that routine until school starts next August.  For the short-term (summer), I’m having family/friends “sponsor” weeks of childcare while I work.  The calendar only has a couple of holes in it proceeding all the way through the summer into next fall.  I intend to take my leave to coincide with the school system’s holidays so I can have that time with the kids, and they won’t have to do year-round preschool/daycare.  I’ll also have family and friends help cover summer/winter breaks for subsequent years.  Beyond that, who knows!

I’m planning to take Claire with me along with a few other couples on a trip to Ireland & Scotland this June, and we’re excited about that.  It’s a unique opportunity for her to get some international travel exposure at such a young age, and I’m thrilled to do this with her.  I plan to take a similar kind of trip each year.  The boys aren’t old enough yet for international trips like that, but we’ll have some good times state-side!

We’re doing well overall.  The kids are happy just like before most of the time.  The boys are too young to stay focused on anything for a long period of time, and sadness and grief are no exceptions, so that makes it easier for me.  Claire is old enough to focus on her loss, and she does occasionally, but overall she is hanging in just fine.  I’m doing well too.  I think it’s easier to have known this was coming because I was prepared.  For me, I could see my mourning stretching out over a long period of time.  The more of life’s moments I experience without Lori, the more I expect it will hurt.  I’m thinking that the cumulative effect of those events as they occur will be hard to deal with.  So far, not much has happened.  Otherwise, I’m optimistic and very much looking forward to life the same way I was before.

I haven’t finished writing thank-you cards, but I do want everyone to know how grateful I am for the support.  People have provided more meals than we can eat or store.  My laundry was done by a friend for a month!  College friends who are now parents of three homeschoolers are finishing Claire’s homeschool teaching for the semester, and the homeschool group picks up,drops off, and feeds all three kids every Tuesday for CC.  Others volunteered to take the kids for play dates to free up mornings so I could take care of paperwork and life coordination.  Notes of encouragement and condolences still arrive in the mail each day.

Also, the deadline for writing letters for the memory book being created by Mary Beth and Ashley has been extended until the beginning of April.  So, if you have something you’d like to share, please send it in.  That will really be a cool thing when it’s done!  For what it’s worth, with permission from those who submit, I’ll try to share some of those stories on this website after the book is finished.  In case you don’t know what that’s about, here’s a reminder of what Ashley posted here previously:

From Ashley:

Lori’s life has impacted so many people on so many levels. We heard many stories from family and friends at her memorial service. I know there are many more of us who want to share what Lori meant to us. Marybeth Young and I (Ashley Crew) want to put together a book of YOUR STORIES ABOUT LORI to share with Mark and the kids.

We are looking for any words you have on how you or others have been impacted or inspired by Lori and her incredible faith in and friendship with Jesus Christ.

You can make it as short or long as you would like. It doesn’t have to be grammatically correct… It’s your story so put it any way you want. If you feel that your story is too personal please state at the top of the email “Anonymous” as we may make this available for everyone with Mark’s approval.

Please pass this on to anyone who has been affected by Lori’s journey through you or the sites.

You can email YOUR story to: thisideallife4him@gmail.com

Ripple Effect

We had a sweet time at Lori’s memorial ceremony.  During the visitation hours, many people shared some great stories with me about Lori impacting their life.  Others shared in front of those gathered at the memorial service.  Others still shared with me over fb and by email some very encouraging, impactful stories.  Three different women approached me with a desire to collect everyone’s stories to compile them into a legacy book.  I love the idea, and it would be great to have those for my kids and the rest of the family.  Below is a write-up that one of those women wrote for me and asked to have it posted on ThisIdealLife.  Please read and reply to her if you have a story and are willing to take the time to write it up!!  Faith stories or funny stories.  Any/all would be great!  Thanks again for all of the support.

From Ashley:

Lori’s life has impacted so many people on so many levels. We heard many stories from family and friends at her memorial service. I know there are many more of us who want to share what Lori meant to us. Marybeth Young and I (Ashley Crew) want to put together a book of YOUR STORIES ABOUT LORI to share with Mark and the kids.

We are looking for any words you have on how you or others have been impacted or inspired by Lori and her incredible faith in and friendship with Jesus Christ.

You can make it as short or long as you would like. It doesn’t have to be grammatically correct… It’s your story so put it any way you want. If you feel that your story is too personal please state at the top of the email “Anonymous” as we may make this available for everyone with Mark’s approval.

Please pass this on to anyone who has been affected by Lori’s journey through you or the sites.

You can email YOUR story to: thisideallife4him@gmail.com

We will begin compiling the stories in approximately 2 weeks… please have stories to us by March 1st.

Funeral Plans

Plans have been set to celebrate Lori’s life for this Saturday, February 13 here in Dayton, OH at Fairhaven Church.

We will have a visitation from 2-4 PM to meet with family members and offer condolences followed by the funeral service from 4-6 PM. There will not be a body present because Lori donated her body as an anatomical gift to the Boonshoft School of Medicine at Wright State University.

A month from now, there may be a simple memorial service in Springfield, IL, but as of now those plans are yet to be determined. I would encourage you to come to the funeral this Saturday if a Springfield memorial doesn’t work out and would leave you with regrets.

For those traveling, the below hotels are offering bereavement rates. When calling to book, mention you will be traveling for a funeral and request the bereavement rate. We do have a room block at the DoubleTree. There are no shortage of hotels in Dayton, but these three were the ones called to check on rates. Feel free to book wherever you’d prefer.

DoubleTree Suites by Hilton
(937) 436-2400
300 Prestige Plaza Dr, Miamisburg, OH 45342
We have a block here under the name Lori Jones Memorial. The rate is $89/night + tax and includes breakfast. The lobby is under renovation but the rooms are very nice.

Holiday Inn Express Centerville
(937) 424-5757
5655 Wilmington Pike, Dayton, OH 45459
This hotel is the closest to the church. We have a block here under the name Lori Jones Memorial. The rate is $109 / night + tax and includes a complimentary breakfast. They have both single king or double queen rooms.
The block expires on Wednesday but they will honor the rate past then. Ask for Daniel or Paul.

Country Inn & Suites
(937) 425-7400
8277 Yankee St, Dayton, OH 45458
Bereavement rate is $74 / night + tax
As of time of posting, they did not have many non-smoking rooms available

Strong

Written 4 Feb:

On February 3rd, I was sitting next to Lori’s hospital bed at MVH Hospital working on a laptop and listening to a song called Difference Maker by NEEDTOBREATHE.  At this time, Lori was still responsive when we asked direct questions.  It was common however for her to fade out of a conversation and simply fall asleep.  If we asked her about her pain, she described the location and she rated the pain.  If she had to go to the bathroom, she was shaky walking there, but she could go on her own strength fairly reliably.  Her motor skills were diminished but not yet to an extreme amount.  She slept most of the time, and her movements were slow and stiff.

While I listened to the song, I had my back turned about 45 degrees away from the bed, so I wasn’t facing her directly.  Near the middle of the song, she sprang up and moved into the seat with me (nearly knocked me off).  I thought she was falling out of bed, and I started to move to catch her before I realized that she was intentionally moving fast because she wanted to sit with me.  I gladly relinquished half of my seat, and she wrapped her arms around my torso and put her head on my shoulder.

She repeated the words “You’re so strong” over and over.  She wasn’t crying but she had that elevated pitch in her voice which happens just short of crying.  She had listened to the song and watched me work next to her.  She wanted me to know she loved me and was appreciative of me being there to support her.  It was exactly how a man likes to be praised.  What man doesn’t love to hear his woman tell him how strong he is while resting her head on his shoulder? Honestly, that is all a man wants in life.  We men show off for girls starting at a very young age, and we never stop.  It’s always on our minds.  For crying out loud, when I play church softball, there is a vastly different feeling for me when she’s at the game as compared to when she’s absent.  No kidding, I care more and play harder when she’s watching even though she wouldn’t care either way about my actual performance.  I remember a pickup basketball game at Ft Bragg (I was over 30 years old) where she walked into the gym mid-play, and I upped my game immediately.  She rarely came to the gym when I play basketball, so this was my moment.  I’m kinda awesome at basketball, so I blew it up as you can imagine.  Those poor high schoolers received an epic old-man beat down that day.  It is pitiful how much men want their women to notice them and to acknowledge our strength and ability to take care of them.  I’m pretty sure I’m not alone in that.  Heck, my boys are already doing it when they are around girls.  And they have no filter so you get to see it raw.  They’ll literally flex in front of a mirror and ask me if they look bigger after eating their vegetables.  So you can understand that when she repeatedly exclaimed “you’re so strong”, she was hitting the sweet spot.  I knew she wasn’t talking about my muscles, but I allowed myself to believe it was both in admiration of my emotional support as well as my biceps.

So we sat together in the chair in her hospital room, and she continued to pour out love and praise.  The coolest thing about it was that this wasn’t anything new.  She always supported me from the very beginning.  When we were dating, she started following Cincinnati Reds baseball and UK basketball because I was into it.  In pilot training, I struggled for a while early on.  I flew a lot with the flight commander for a week or two, and we debriefed after each flight.  One day, the squadron sponsored a spouse orientation day where they gave the ladies a tour of the building, simulators, and planes on the flightline.  Apparently, she asked question after question after question.  My flight commander loved her, and he was raving about how great it was to host her that day.  During my debrief of the next day’s flight, my flight commander spent 10 minutes telling me to tap into Lori as a resource to help me improve.  He encouraged me to go home and try to answer every question that she had about what I was learning.  If I could teach it to Lori, then I would truly know the material.  By the end of that year, Lori knew all of the traffic pattern radio position reports, the BOLDFACE emergency procedures, and answers to all of the questions in the master question files.  When I met her, she was already passionate about plastic pipe molds and the city’s water sanitation system.  Why?  Because her dad was once a sanitation engineer and he also designed molds for a Plastics Co. during most of her growing up years. Her brothers got into NASCAR, and she became a huge fan too.  I don’t think she cared one bit about the sport.  She was just interested in everything that everyone she loved did.  Lori loved to love people and her genuine desire to know them better led her to like NASCAR of all things.

She never assumed that she would fail.  The assumption was that she was always good enough for whatever she wanted to do.  For everyone who asks “how did you get on the show?” in response to her appearance on Wheel of Fortune, the short answer is that she believed she could.  That is the truest thing I’ve written so far.  She never doubted, and she pursued it as if it was going to happen.  That’s why she succeeded.  That and her bubbly personality and steel-trap puzzle-solving mind.

Fearless and confident.  That’s how she made babies too.  Big belly!  Big babies!

She was a visionary.  We made a mission statement because of her initiative.  Now I have that mission statement as an enduring gift.  Think how big that is for the kids too.  It was the result of two days of soul searching by both of us to define the absolute most important things that she and I valued in life.

Leadership came naturally to her.  I often wondered what she could do if unleashed in public office.  She flipped a POA board on it’s head through pure grit, an ironclad will, and perfect charisma.  If you put Lori in a room full of leaders and gave them all a group project to complete, she always emerged as the team leader.  It did not matter how headstrong the other “leaders” were.  It was uncanny how they deferred to her eventually.  I saw it happen so many times.  Despite her default leadership setting, she humbled herself and deferred to my leadership in our marriage more often than not.  When I failed, she stepped in and gently coaxed me back on course.

As a wife and mother, I don’t know how to describe it.  She was just pure love.  Tough but very tender.

Although she was passionate about many things, she was most passionate about Jesus Christ.  After her diagnosis, she remained strong.  She never cried about her terminal diagnosis, and I know it’s true that she was never afraid.  She never became emotional about her own plight.  However, she immediately cried (celebrated) and showed deep emotion when friends and family reported to her that they found a footing for their faith in God because of her example.  She loved to hear about friends finding Christ or following Him more nearly.  I think it dominated her thoughts particularly when she was at her lowest points physically.  The day she jumped out of bed to sit with me in the hospital, she again prayed and begged for her friends to find Him!  She wanted to share what she had inside with everyone she knew.

Tonight, she bolted out of her bed and ran to wrap her arms around her man so she could praise Him and admire His strength.  She told Him repeatedly “You’re so strong”.  She’s into what He’s into.  He’s into feeding the homeless and caring for the needy. He gives water that eternally quenches thirst.  He prefers to be with the poor in spirit, those who mourn, the meek, the pure in heart, and the peacemakers.  He’s into loving His enemies.  He prays and fasts and stores up treasures in places where no one can break in and steal.  He never worries about tomorrow because tomorrow will take care of itself.  He’s chooses the narrow paths, and He speaks absolute truth.  He’s into healing and miracles and faith and commanding the weather.  He is all powerful, but He also likes fishing and camping by the lake, building furniture with His hands and mending nets.  He defines sacrifice.  He’s into storytelling and teaching.  He leaves the 99 to find the 1 that is lost.  He offers unearned grace and peace and mercy.  He conquered death once and for all.  The true undisputed champion.

Lori’s spirit left this Earth today, and I know she’s complete now.  I felt it in the moment.  I was never her #1 man, and that’s how it should be.  She lived for eternity, and at this exact moment she’t inheriting her full reward.  We should all hope to live as rightly and to die as honorably as she.

Checked In

We are all settled in here at a very nice hospice facility in Dayton.  We had a good time with family.  Lori is not in much pain but she is sometimes uncomfortable because of the constant fluid buildup, but we have a good drainage schedule now so it’s better.  She’s mostly unresponsive.  We feel really lucky and blessed when she replies to a question or says I love you back.  Her liver numbers are all off the chart so it’s not functioning at all anymore.  We don’t have a timeline, but we’re ready for days or potentially weeks because she is young and otherwise strong.  Thank you everyone for the prayers.  Lori would remind us that things happen when we pray.

Request: Pictures/Videos/Text Screen Shots

We made it through the night fairly easily.   We drained a bunch of fluid before bed then a bunch this morning just now.  She’s barely responsive to any attempt at communication though, and her ammonia levels actually went back up despite the meds trying to control that.  I still definitely plan to sign with hospice here in an hour or so.  I’m looking forward to the change of scenery and hopefully some increased comfort abilities.

A couple days ago, I worked it out for my brother-in-law, Jonny, to create a video for Lori.  He’s a no kidding full length feature film maker, and he puts together some pretty cool videos.

He set up a Google Drive as a place for everyone to share pictures or videos or maybe text screen shots if you have some special ones from Lori.

NOTE FROM JONNY: IF they can locate the original, high quality files, that would be preferable. (For example, photos uploaded to facebook are automatically compressed, so if you right-click and save a photo straight from facebook, you’re getting a lower-resolution version of the original.)

Here’s the link to his Google Drive.  Go!

If the hyperlink doesn’t work, here’s the full address:

https://drive.google.com/folderview?id=0B1jX1jzx-abbS0VzRlJBalIyZmc&usp=sharing

NOTE: You do not need any user and pass to access OTHER THAN your own Google account.

Finally, if you want to see some of the stuff Jonny did on his last movie (Couch Survivor), check out this fb page after you upload your pics.  Maybe drop him a word of encouragement on his personal fb page linked below, because he’s taking on a big project for me.  It’s a cool thing to do, and it takes a lot off my plate as far as planning.

COUCH SURVIVOR:  https://www.facebook.com/couchsurvivor/?pnref=story

JONNY’s FB:  https://www.facebook.com/jonny.walls.77?fref=ts

Hospice

The oncology docs here at MVH told us that her liver will not get better.  It is not functioning well, and each day the liver/blood numbers are getting worse.  They also don’t have any further lines of treatment to recommend for her cancer.  I checked with Dr. S, and he concurs that there are no more traditional chemo or FDA approved drugs for her.  However, Dr S would be willing to prescribe an immunotherapy drug, but he wants her organs to be functioning well before he gives it to her.  The immunotherapies are known to wreak havoc on the body so I agree it would be rough to try that at this time.  Also, he needs to see Lori in person to do an analysis so he can feel right about a prescription.  We are definitely in no shape to travel to Indy, and he already said she’s in no condition to get the immunotherapy now anyhow.

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Romans

Lori was working on a few different topics for this section of the website.  She wasn’t done editing most of them, but I read this recently and decided it would be good to post it for her without it being finished.  So this is where it was when she became unable to finish:

Romans chapter 8 has quickly became one of my favorite chapters

in the whole Bible because, upon my diagnosis, I read something encouraging and challenging every time. One of the biggest reasons Romans 8 became my favorite was because it reminded me of the perspective on life I need. So, because of it’s importance, today’s post will focus on this chapter, and specifically, at Romans 8:9. Continue reading

Being Afraid to Trust God

Lori was working on a few different topics for this section of the website. She wasn’t done editing most of them, but I read this recently and decided it would be good to post it for her without it being finished. So this is where it was when she became unable to finish:

If I say I fully trust God, that means that WHATEVER happens, good or bad, I will trust Him in the midst! There was a time in my life when I knew I wasn’t being fully open to Jesus. I struggled with this feeling (somewhat like a separation from God), so I finally confessed to Him that I could not actually pray with sincerity that God would do with me whatever he wants and that whatever happens in my life I already trust that it will be okay!I had to confess to Him because I felt like that part of me was causing a separation between me and God. I just told Him that I was dealing with fear and that I would be lying if I said I was prepared for anything. I left it at that and didn’t notice any sudden changes. 

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Decent Night of Rest

She rested fairly well last night, but when awake, she complained of knee pain and sometimes some back pain.  The meds are keeping her very sedated.  Answers to questions come rarely, are always delayed, and are usually inaccurate.  It’s nice that she’s able to rest though.  The doc this morning was worried that her liver or kidneys aren’t filtering the opioids and that they are dwelling longer and causing such extreme drowsiness.  They did some blood work and found that her ammonia levels were very high.  It was over 1100 and I think normal levels are around 350.  So, they are giving her lactulose which should control those ammonia levels and should also help her have a much needed bowel movement.  We’ll be in the hospital at least another 24 hours.

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