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Friday, September 29, 2017

Singing Through the Suffering

I had a brother in Christ encourage me to keep writing back in May.  He even offered to edit my writing for a book.  Incidentally, that's when I stopped writing.  I couldn't write.  Maybe it was a combination of things but I started to question why I was writing.  Was it for me or for God's glory?  Was I interested more in people's responses, how many likes I got or was I really writing so that others could see God working on and through our weakness and brokenness?

This summer has been a medley of very difficult moments and amazing adventures.  I have trained at least 17 different caregivers in the last 4 months and only 3 are working very limited hours right now.  We lost 2 full-time caregivers this summer and have yet to replace them.  We've had various issues with the staff that I've trained, ranging from complete no shows to severe short-term memory loss.  I spend countless hours training these women and then they don't work out.  It has created a lot of stress and anxiety for our household.  I've found that the last two weeks,  David has been so much less anxious because I have been the primary caregiver for 22-24 hours of the day.  Although tiring for me, I actually find myself enjoying taking care of him more when I'm not training in a bunch of unreliable people because his mood and behavior is so much better.  Our girls have gotten pretty good at playing quietly in the morning while I'm taking care of David's personal cares.  We've developed a fairly smooth routine where I get the girls dressed, drinks in hand so they will color or "read" quietly while I attend to David's needs.  It obviously is not perfect.  Toddler fights break out over who gets what color of marker or cup, someone stubs a toe, someone decorates the entire wall with non-washable markers, and I'm running back and forth between both parties trying to keep the peace and safety in our home but we make it out alive every day...with possibly a few more grey hairs!



David has hit kind of a plateau with progress. Not much has really changed lately but we are very grateful for an answer to a prayer this summer that we've had for years.  We've been pretty lonely and needed friends close-by that understood our life or were at least willing to flex to be a part of it and build us up.

One evening, I decided that we could all go for a walk.  I strapped Abi to my back and pushed David in his wheelchair while Jocelyn skipped ahead, gleefully picking wild flowers.  We hadn't gone far when a black car slowed as it passed us and then turned around.  A tall man about my age got out of the car and walked towards us.  He introduced himself as our neighbor a couple houses down.  As we talked, we found out he and his wife were Christians.  We invited them over for dinner.  The man comes early every Thursday morning (at least as often as he can) and loads David up in our van and drives him to a coffee shop where a few other men have a Bible Study.  He invites him to be with his friends just like he is just another friend.  His wife is also very sweet and will come on walks and fellowship with me.  It's such a blessing and such a specific answer to prayer!  God hears!

We've gone on a few trips this summer.  My whole immediate family got together on the Oregon coast.  My sister helped me drive all the way out and my mom helped me drive on the way back.  Our little family did amazingly well for how much driving we did.  Our girls love traveling and make it pretty exciting!  They love to point out all the interesting new things along the way.  I love how their excitement is catching.  I find myself noticing more of the details and intricate design of God's wonderful creation when I travel with them.

David and I went to a worship conference in Nashville about a week and a half ago.  I've never been so encouraged at a conference.  I wish I could share all got from that conference.  I went there feeling very low and burnt out in my soul and came back feeling like I'd stood under the waterfall of God's refreshment.  I'll share a few highlights from my gleanings.  Pardon me if it's a little scattered and random.

God isn't interested in healing bodies (although He does care and has compassion).  He is interested in healing souls.

A great portion of what we learn and remember about God and the Word are contained in what we sing.  So what we sing is of great importance.  We should be careful to be teaching our children through song the truth about God, His character, Jesus and His work on the cross.  We should teach our children songs of lament so they have songs to sing when they go through trials and suffering, pointing back to Christ.  Our songs of praise and glory to God are a witness to the world.  When we sing praise to God, we are engaging in spiritual battle.  We are declaring God is victorious.  Satan cannot stand to see us sing through suffering.  In 2 Chronicles 20:21 it says the singers went before the army: "And when he had consulted with the people, he appointed singers unto the LORD, and that should praise the beauty of holiness, as they went out before the army, and to say, Praise the LORD ; for his mercy endureth forever."  Our singing of His praise comes even when we don't feel like it because He is worthy.  He has already conquered sin and death so we will always have something to praise Him about even in our darkest hours.

Our personal worship comes before corporate worship.

Let the Word of Christ dwell richly in your hearts.  If we are not occupying our minds and hearts with Him, how are we going to have any substance with which to worship?

I hope you are encouraged by some of the nuggets I gleaned.

Thank you to those who still think about us and pray for us.  We need your prayers.  We are so thankful for those that encourage us by notes by email or snail mail.  It has been 5 years since David's accident and you are still taking the time to follow our journey and pray for us. Amazing!

Sunday, June 4, 2017

I Have This Treasure

David and I watched a movie tonight that many may have seen already or maybe you are not familiar with it.  It was "Me Before You": a story of a young woman that becomes a caregiver/companion for a young man who became a quadriplegic after an accident.  The young man is deeply depressed and has made plans for assisted suicide.  The young woman brightens his life by her exuberant presence and helps him "live a little."  She learns of his plan and thinks she can persuade him not to go ahead with it.  In the end, her love and the joy she brought into his life is not enough to restrain the desire to end his life because of the hopelessness and crippling pain the young man lives with as a result of crushed dreams and loss of vitality.

I would be lying if I don't have thoughts about if it would have been better if David would have died. Not because I want him gone but because life is so difficult and painful for him. He's so limited and dependent.  He himself struggles with thoughts about desiring death rather than life.  These are not uncommon thoughts for someone with a chronic illness or condition that makes them feel as if their life has been stolen from them.  These are despairing thoughts.  Someone in this place can feel entitled to these feelings because of what has happened to them.  The tragedy.  The loss.  The loneliness.  The unfairness of it all.  It can suck you in to a pit of darkness that tempts one to wallow there.  But we are not called to wallow in our sorrow forever.

I asked David what he thought about the movie.  He didn't understand the end but when I explained it to him and dug a little deeper, he provided me with some beautiful insight and more hope than I was expecting.  I thought maybe he'd even agree with the young man but he didn't.  He said,  "I have so much to live for.  Be content with such things as you have for He Himself said, 'I will never leave you nor forsake you.'  I love watching you and the girls. I love parenting with you and being with you.  I love watching you smile."

"But we have this treasure in earthen vessels, that the excellency of the power may be of God, and not of us." 2 Corinthians 4:7

We are vessels, broken, so that the power of God and the light of His glorious gospel will shine out of us.  He is our hope.  Our hope and reason to live another day lies in Christ, the anchor of our souls.

Sunday, March 26, 2017

Traveling With a Major Disability and Two Kids

I have another more normal blog post that I'm working on but I thought I would post on a subject that I think maybe people may need a little awareness about since this is brain injury awareness month.

Traveling with a disability is an adventure.  At least that's how I try really hard to view it as but to be really honest, it's usually a very stressful experience, especially if it involves flying.

Next week we are planning on flying to CA.  This isn't a first for our family so we are semi-seasoned.    When I plan a flight to CA, I have to plan months ahead of time.  I send a bag ahead of us with essential supplies for David with whoever is going back to CA.  It's a way to try to minimize luggage.  Last time we flew, I had a baby strapped to my front, a backpack on my back, a leash in hand to keep track of our 3-year-old, and pushed  David in his wheelchair with another carry-on on his lap.  I always have to do a mini-training session at the gate to show the guys how to do a stand-pivot transfer to an aisle seat.  One man couldn't figure out how the wheelchair could be set up at a 90 degree angle from the aisle chair.  He didn't know what a 90 degree angle was.  I just did the transfer myself with a baby still strapped to me to save time trying to explain simple geometry. We didn't get the front seat like most times so we got stuck in the middle of the plane.  I let two burly strong men figure out how to stuff David in an airplane seat.  On the whole 4-hour flight,  neither of my kids slept.  Because they are small energizer bunnies, they never stopped moving.  The woman in front of us leaned her chair all the way back, further compacting my already reduced space because of the 16-month toddler on my lap and yelled at them to stop bumping her seat.  I felt like I'd completed and lost a 4-hour wrestling match when we got off that plane.

This time I won't have the luxury of carrying the toddler in a pack this time.  I might just have to not pack for every possible emergency that most likely will happen!  I'm not really sure how I would change David in an airplane lavatory.  That would definitely be an experience I'd rather not experience.

This time we will be staying in a hotel.  I have to make sure our room is handicap accessible and specify a roll-in shower.  I have to make sure they have a shuttle to the airport that has a lift or ramp.  That involves talking to a couple incompetent people before I talk to a person that knows what an accessible vehicle is.  Everything ends up being an education session.  Then I need to figure out who can help me get two car seats, a wheelchair, a large suitcase, small suitcase and two toddlers, and two carry-ones to the ticketing counter because as much as I'd like to think I can do everything myself, I cannot manage all that!

There you go, a glimpse into traveling with a disabled spouse and two small kids across the country.

Saturday, February 18, 2017

Somersaults and Vertigo

After my concussion about a year ago, I had some problems with night driving, dizziness, painless migraines for almost a year.  I went to an occupational therapist for a few visits.  My eyes were not working together like they were supposed to and struggling to get over to the left.  One day, I got the idea that my girls might enjoy watching and imitating gymnastic tumbling videos.  So we put some couch cushions on the living room floor and turned on YouTube, somersaulting around, giggling like silly girls.
The next day I noticed I was a little sore from moving and bending my 30 year-old body in ways that I hadn't done for years!  But, I noticed something else.  My dizziness was gone.  My night driving was better and I no longer get sick sitting in the back seat while someone else is driving!
In our inner ear we have crystals that help us know where we are in space.  Sometimes if we hit our head, the crystals become dislodged and our balance is off, also known as vertigo.  When I was working as a PTA, one of our specialties was working with people with vestibular problems (balance system).  For certain vestibular dysfunction diagnoses, we would do a maneuver where the patient would sit on a mat table, we would turn their head a certain direction and swoop them back toward the table.  This would realign the crystals and they would once again have their balance.
David's neuro optometrist is working with him on being more aware of his environment.  He does spinning and "pin the tail on the donkey".  He has been standing every day to shower with the help of the caregiver or I.  He can stand on one leg for a few seconds while holding onto a rail.  His neuro optometrist wants him to do somersaults.  She wanted to have him do them under water but I'm scared to try because last time he tried to breathe underwater!  I'll try land first!

Tuesday, December 27, 2016

Wrapping up 2016

I haven't written a blog post in a few months.  I haven't felt like I could really write what was on my heart.  I haven't felt very inspired. So now I'm writing a sort of summary of our year.

This year was a year of not much change in David's recovery.  That may be part of the reason I couldn't write.  I've been struggling with this.  The last four years, David has experienced so many "impossible" milestones in his recovery.  Each one gave me this extra kick to keep trundling on, keep pushing barriers.  But now we've been at a long plateau for awhile and it's hard to be in just maintenance mode.  Having experienced the PT world, I am in constant rehab mode.  Physical therapists always have hope that we can help someone improve.  We hate the word "maintenance."  This year, David had his first hospitalization since his accident.  He was very very sick but the Lord chose to, once again, preserve his life.  He reached a goal this summer and was able to climb the steps and walk into the sauna at camp.  He climbed 18 steps at my cousin's house at Thanksgiving and climbed down our basement stairs, walked all the way to the back of the house to the laundry room, loaded the washing machine and walked all the way back to the stairs and up again.  He drove a riding lawn mower successfully this summer and we rode our tandem bike 8 miles.

This year has been a lot of trying medications and finding out that nothing works.  I believe that there is a place for western medicine but it is more about saving lives than healing lives.  We are finding out more and more that God is the great Healer.  And here, on earth, it's not always about the healing; it's about the journey, the relationships, the learning.  David's gut has taken a major hit this year from antibiotics after antibiotics, especially the hardcore ones he received in the hospital and at home.  The infectious disease doctor basically told me that if he got another UTI, he might not respond to the antibiotics anymore.  I decided to do an experiment.  I put David on a very strict diet this month with the exception of Christmas Day.  Around Thanksgiving, David was absolutely miserable.  He was going through horrible withdrawal symptoms from Paxil (an anti-depressant he tried).  He was breaking out and itching all over, not sleeping, very anxious and driving me insane!  He was having severe headaches for almost every day of this year.  Now after being on the diet for almost a month, his rash is gone, he sleeps all night, he's motivated to be independent, he's moving his left arm more, has less tone, and he's only had 3 headaches in 2 weeks!  He is not taking ANY pain meds! I'm so thankful that the Lord has given relief.

The girls are growing and learning to be friends.  We are so thankful for them both.  They are little fireballs of energy and bring so much joy and life to our life together.

We had a lot of firsts this year.  We bought our first house together.  We got our first dog and cat.  Abi learned to walk.  I learned how to use a snow blower (using it a lot this week!).  It was our first Thanksgiving with my side of the family since we got married and the first holiday celebrated without my aunt and grandma.  I voted for the first time and I will be 30 for the first time this year. ;)

This is my sentiments for the end of this year.

Because He Lives by Bill Gaither

God sent His son, they called Him, Jesus; 
He came to love, heal and forgive; 
He lived and died to buy my pardon, 
An empty grave is there to prove my Savior lives! 

Because He lives, I can face tomorrow, 
Because He lives, all fear is gone,
Because I know He holds the future, 
And life is worth the living, 
Just because He lives! 

And then one day, I'll cross the river, 
I'll fight life's final war with pain; 
And then, as death gives way to victory, 
I'll see the lights of glory and I'll know He lives! 




Monday, July 18, 2016

Purpose

David has been really emphasizing prayer for complete healing for him lately.  I have to confess that my prayers about him have become more "palliative" than for healing. Maybe my faith that God will completely heal him has waned.  Maybe my vision of healing has changed.  Maybe I've come to accept this life to some degree.  Maybe there is some higher reason why God has maintained the "not yet" answer.  Maybe I'm scared of complete healing.  Sounds strange, I know, but I've kind of gotten used to this version of David.

We have been busy as usual, running all over the country.  Within hours of returning to WI from CA in June, my grandmother passed away and so I turned around and flew back with Abi a few days later.  I came back on a red eye flight and got home at 7:30am to find out my caregiver called in sick. We flew around that morning and went to church and then came home to pack up to go to Storybook Lodge that afternoon.  Our oldest daughter is deathly afraid of dogs and has separation anxiety when things are upset in her little world.  My week revolved around calming her wild emotions but we were able to enjoy some excellent teaching, great fellowship, and enjoy God's beautiful creation in Minnesota.


I took several nuggets away from camp that week.  One ties in with my first paragraph.  The women's study leader took up studying some influential women in the Bible. One of them was Hannah.  Hannah went yearly with her husband to offer a sacrifice to the Lord and went before the Lord in her barrenness to plead for a son.  It was not just a child she wanted; she wanted a son of Godly influence on the nation of Israel.  She wanted a son to give back to the Lord for a high purpose.  We were challenged to pray for our children to be influential in God's kingdom.  I don't have boys that will become great preachers or whatever but I have girls that can be strong help meets and I have a husband that has a lot of potential.  May God give me vision to pray for my family.

David is still making little bits of progress.  He was able to climb the steps into the sauna this year at camp, which made him very happy.  Next time, his goal is to get in the lake and swim!   When he walks with me, I don't have to reposition his left left leg every step.  Translation: his left leg isn't crossing over as much.  We were at his parents house about a week ago and his dad crushed a mint leaf under his nose to see if he could smell it. He said he thought he smelled something but he smelled sour.  He smelled though!! He hasn't smelled in a few years! He hasn't really been able to smell anything since but he has a stuffy nose from a cold right now though.  His headaches have returned but we haven't gone to the ER for several months now.  His memory is still poor.  He has had a few episodes where he doesn't remember me at all.  These are sad moments for me but he seems to come back and remember enough to know I'm his wife.  One morning he woke up and thought I was his brother, Nathan!  I asked him, "Do I sound like Nathan??!"  He said, "No. Who are you?"  I couldn't help but laugh that he thought I was Nathan!  He laughed too and we joked about it later.  We have to try to keep it light or it gets too heavy to bear.  He forgets mostly everything from the last few years and months.  He doesn't remember a lot of conversations we have so I get frustrated a lot trying to figure out what puzzle pieces are missing and what connections are working.  His motivation is tanked and seems depressed but has at least gotten to a point where he doesn't want to die anymore.  Pray for motivation, healing and purpose for David and emotional, physical, and spiritual strength for all of us.

Monday, June 6, 2016

New home and other updates

I've had some thoughts rolling around in my head and I thought I'd share them just in case it may be used to encourage someone.

I was listening to the radio the other day and there was a dramatization of the life of Samson on.  If you are familiar with the story of Samson, you know that Samson was a pretty headstrong, rebellious son.  His parents were told by an angel that he would deliver Israel and that he would be a Nazarite.  His parents feared God and, I'm sure were saddened by the path he chose for his life. They were probably thinking, how in the world is God going to use this son to deliver Israel, when he was hanging out with the very people they were to stay away from! Not only that, but he married one of them and had parties with them! But in the end, he did destroy the Philistines.

I've also been thinking about a few other people in the Bible that God told them to do a specific thing or that a specific event would happen but the way it happened was totally unconventional, at least my men's ways.  Hosea had to marry a harlot and love her (can you imagine?!).  Mary conceived Jesus before she was married.  Jesus was crucified on a cross and rose from the dead before he got a chance to be King of the Jews (at least that's what they were thinking).

Where am I going with all this? Simply this: God's ways are not our ways, and His thoughts are not our thoughts.  Things may seem to be going quite awry but He uses it and finds a way through our messy, broken lives to bring about purpose and glory for Himself and a furtherance of His kingdom. Just trust Him.

I promised a more in-depth update so here it is.

We are settling into our new home. The remodeling is done and we are moved in.  We are still putting finishing touches on decor and smaller details but we are functioning. :)  The grass is green, the sun is shining most days and we are loving our new space!  We have a back yard that had a playset/sandbox already inside a nice big fence. Jocelyn loves spending lots of time getting super dirty, swinging, sliding and checking the perimeter for holes for which to escape out of! ;)

David is doing good overall.  He had a stomach bug over Mother's Day weekend but my mom and dad were here so, although I spent the night before cleaning up stomach bug carnage, I got to enjoy a quiet day with David and Abi and then later with Jocelyn.  David hasn't had many headaches since we moved except for a couple weeks ago.  I'm assuming from a bladder infection.  David saw the neuro optometrist in Chicago a couple weeks ago.  This was the second time he has seen her.  She was pleased with what she saw, even though I reported a couple negative things I had noticed with him in the last couple months (memory regression and strong rotation of his trunk and head to the left).  She noted a positive change in his pupil size.  His pupils have become a little more symmetrical in size.  This has not changed before, at least in the last 2 years.  She gave him another color of the syntonic filter glasses and some new prism goggles to help his posture.  He is continuing to work with the "flipper" prism lenses to increase his awareness of the environment.  His reaction time seems to have improved slightly.  We rigged up a very very redneck baseball bat and propped him up in his standing frame and threw a small stuffed animal at him to bat at. He was able to hit it twice.  I expect it to improve with practice.  He visited his physical medicine Doctor and demonstrated his walking skills. He was impressed and amazed at him!

Today we visited the John Deere dealership.  David got to test drive a riding mower.  He will be getting lots of practice when it arrives in a couple weeks!  He is beyond excited to be driving some sort of machine. It will give him a chance to hone his driving skills at a slower speed and speed up his reaction time.

I'm having trouble uploading pictures and videos to this blog lately so I will put a few on our Facebook page.