The God Who Sees and Hears

I wrote this last Sunday as I flew home from a weekend of reprieve.

Then she called the name of the Lord who spoke to her, You-Are-the-God-Who-Sees; for she said, “Have I also here seen Him who sees me?” Gen 16:13

Who is like the Lord our God,

Who dwells on high,

Who humbles Himself to behold

The things that are in the heavens and in the earth?

He raises the poor out of the dust,

And lifts the needy out of the ash heap,

That He may seat him with princes—

With the princes of His people.

He grants the barren woman a home,

Like a joyful mother of children.

Praise the Lord!  Psalms 113:5-9

This weekend I was able to take a break, thanks to my parents in-law.  Yesterday I read in Genesis 16 about Hagar pregnant, thirsty and alone in the desert.  The Lord spoke to her.  He heard her cry in her affliction and He saw her need.  This morning I opened my Bible to Psalm 113 and it went so well with what I read yesterday.  A God Who sees, hears and knows.  He humbled Himself and became a man, a servant, tempted in all points, afflicted and wounded for our transgressions.

Sometimes it’s very hard to see a light at the end of the tunnel.  It’s hard being a caregiver for the long haul with no end in sight and not much real respite.  Most people care for elderly for a few years or someone with a terminal condition, so although the “end” is not exactly welcome, there is a foreseeable end.  But there are many of us caregivers that care for a child, spouse or other loved one for an indefinite time (obviously death comes for all) because the injury or condition happened early in life and isn’t necessarily terminal.  Sometimes, just that thought is overwhelming...so I try not to dwell on it and take one day at a time.

I dream about having vacations that are actually vacations.  Where I would get to be with my husband and not have to worry about whether bathrooms are big enough or if there’s too many steps or if a doorway is too narrow.  A vacation where I could enjoy his company without straining all of my concentration on figuring out what he’s saying.  A vacation that I don’t have to plan every little detail around brain injury.  It’s just a dream though.

He sees, hears and knows.

That’s comforting. I’m not alone.  There are many reminders of this for me.  Whether it’s a stranger paying for our meal anonymously, packages of coloring books for the girls, a kind word or a random man offering to plow our driveway when he saw me struggling to move a huge snow “boulder” out of the front of our driveway. 

Hello again

Hello all!

I know some of you have posted a couple comments on here. I do read them.  Thank you to all who continue to pray for us.  We are still here.  I can’t believe it’s been over a year since I’ve written a blog post!  I guess with 3 kids, life kind of runs away.  My inspiration for writing has been buried in lots of sleepless nights.

We welcomed a sweet baby boy, Lucas David, into our family on July 18th, 2018.  The girls just adore him and the feeling is mutual.  He is crawling everywhere and wants to be in the middle of everything.  We got a robotic vacuum and he loves to try to catch it and even get merry-go-round rides on it when it is on its spot clean mode!  Jocelyn started kindergarten last Fall and is excelling and loving school.  We are so blessed to have a Christian school she can attend right around the corner from us.  We are so grateful for this option for our family, as the homeschool option would be a difficult one for me to do well at.  Abi follows in Jocelyn’s footsteps but has a big enough personality that she won’t stay in the shadows.  She loves the extra attention when Jocelyn is at school.

Our caregiver situation rises and falls but has been pretty sparse for several months.  David’s dad decided to get hired on at the agency we use, so when there are gaps and he’s available, he can just take the shift and help with David’s cares.  It’s been very helpful.

David’s health is good, although we haven’t noticed much changes this last year.  He only had one ER visit.  He tried to be independent and take his foot pedal off.  He lost his balance and fell head first into to bathroom tile.  I can get him off the floor by myself but I was holding his head so I decided to let some firemen pick him up this time.

 I was so impressed by Abi.  She kept calm and was able to get gauze for me.  He has been in PT for some trunk control and strengthening his left leg .  He also stays in touch with his neuro optometrist in Chicago.  We just made a visit a couple weeks ago the day after a big snow storm.  As we were driving down the freeway, it was quite sobering.  There were dozens of cars, trucks and semis that had slid off the road into the median.  The optometrist noted improvement in acuity in  his left eye and ability for his left eye to work in conjunction with his right eye.  He will be getting eye glasses to wear soon.  She uses prism glasses to optimize brain function.  It has been discovered that the retina is actually brain tissue.  I’m copying a link to an interview with her if anyone is interested in listening to her explain some of the things she knows and applies with people with brain injuries.  It’s really fascinating. http://www.blogtalkradio.com/facesoftbi/2017/02/16/understanding-how-the-eyes-are-affected-after-a-brain-injury-w-dr-zelinsky

We’ve had record-breaking amounts of snow, especially in the month of February.  We also had some extremely cold temperatures so Jocelyn had lots of snow days and I had to figure out how to squeeze in snow blowing and shoveling our driveway into already busy days. I’m so grateful for the help I’ve had on a couple days.  The combination of piles of snow and very cold temperatures has done a few things to our house.  I wish I’d paid more attention to my dad’s work because I’m turning out to be a terrible handywoman.  But I am learning a lot...and making many trips to Menards.  I am so thankful for YouTube videos and Pinterest tutorials.  At these times, I really feel my inadequacy as a parent, wife, homeowner, etc...

Love Your Neighbor

Life has kind of leveled out for us.  It doesn’t feel as much like every day is such a struggle.  2017 was a breeze in comparison to the previous 4 years.  The receptionist at the registration at the hospital still knows our name but she doesn’t have David’s birthdate memorized anymore.  That’s because he didn’t have one single ER visit or hospitalization.  His therapy visits have moved to a ranch up an hour drive from us that uses horses to help him achieve speech and occupational therapy goals.  David had only one UTI and significantly less headaches.  He’s been able to tolerate me loosening up on his diet restrictions without a lot of problems.  Our oldest has been blossoming into a much less anxiety-filled, tantrum-throwing child.  She is really becoming a sweet, responsible little person.  Our youngest is starting to show signs of the terrible twos but definitely more manageable so far.  She is going to have to get used to not being the youngest because we are expecting baby #3 in July!

Because this last year has been a lot less stressful, I’ve been able to think about reaching out a little more.  I’ve been thinking a lot about “loving your neighbor” and what that means.  Our mission field is not Africa, it’s not in South America, it’s right in our homes, in our backyards, across the street.  In Helen Roseveare’s book, “Give Me This Mountain,” she gives a succinct description of what a missionary is: “I believe that, at its simplest, a missionary is sent by God to live a Christian life, usually amongst people other than his own. It is living which counts.”  It is living which counts.

Unfortunately, or fortunately, sometimes I can’t tell which, we have people in our home 10 hours a day.  We don’t get much privacy so our “living” cannot be hidden by going home, away from probing eyes.  What you see is what you get.  Our marriage, our faith, our mistakes, our arguments, our love, our messes, our imperfections, our family is on display pretty much all. the. time.

Colossians 3:17 NLT   And whatever you do or say, do it as a representation of the Lord Jesus, giving thanks through Him to God the Father.

About a week ago, God gave me an opportunity to act in His representation.  I hope I did what He would have had me to do but I can tell you, I was fully prepared to act the opposite way.  We have a caregiver that is not very punctual or reliable.  She’ll find every excuse under the sun to be up to 45 minutes late.  It was getting on my nerves how late she was all the time, among other things.  Last Sunday she followed us to church in her own car so had the freedom to not participate in our service. When we were done, she agreed to meet us at our home. We needed gas so we were going to be a few minutes behind her.  We got home and she was not there.  I got everyone out of the van, in the house, prepared and ate lunch, and she was STILL not there.  Where was our caregiver??  I called the agency she works for.  They acted like they had no idea what happened to her.  They called back, saying she had checked on her kids and found the babysitter had ditched the kids so she needed to stay with them.  But no one had bothered to communicate this to us.  So, next shift she was scheduled, I was fully prepared to confront her on leaving a client without any communication in the middle of a shift. If anyone knows me, I don’t do confrontation.  I avoid it if at all possible but I felt this was a pretty important issue of neglect that I couldn’t ignore.  She started crying and told me she had communicated with the company and THEY didn’t bother to communicate with us.  She also had been assaulted when she had confronted her negligent babysitter.  I ended up forgiving her and buddy taping and bandaging her broken finger.  Sometimes, it takes a lot of patience and supernatural love of the Lord flowing through you to respond to these situations.  There are so many broken people that are struggling to just manage to get through life that need God’s Love.

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!

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.

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.

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!