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.

Chicago and an eye Specialist

This last week and a half has been a whirlwind. Last Tuesday we closed on a house. We are excited about having our own home. I am coordinating with a contractor to remodel some of the house to make it accessible for David. On Thursday, I went to the emergency room because I was experiencing some strange symptoms as a result of my slipping on some ice and hitting my head the previous Sunday. The doctor said I had gotten a concussion and to rest. Ha! Whenever I tell the nurse about my life at home, they sort of smirk when they tell me to rest because they know it is almost impossible. My dear sister-in-law and brother-in-law came over Friday and let me take a long nap while they watched the kids and brought dinner and even helped pack a few things. On Sunday, David, Abi and I started out for Chicago in the afternoon. I was doing well until it got dark. It was like a switch turned off in my brain and the road started swimming in front of me. I was so dizzy. I was beginning to think that maybe I had not made a wise choice to drive by myself.  I knew I could not make it all the way to Chicago so we stopped in Madison and got a hotel. Thankfully David's first appointment with the eye specialist was not until the afternoon of the next day so I had plenty of time to drive in the morning.  We even had time to meet up with friends for lunch. :)

A lot of people have been asking me how the appointments went with this optometrist.  I will tell about it here so I don't have to tell it over and over.  Maybe I am a nerd but I find this stuff fascinating.  I think it's so incredible how God designed our bodies to be so intricate.  We are really masterpieces of His creativity and infinite intelligence.and wisdom.  We are indeed fearfully and wonderfully made.

David had 4 different appointments, all at one office.  This optometrist that he saw is not just a run-of-the-mill optometrist.  She specializes in neuro-optometric rehabilitation and visual processing and is a member of MENSA.  She is a brilliant woman that is world-renown.  She is also part of a scientific team that is proving that the retina is a part of the central nervous system.  They have shown that changing the way light hits the retina, whether changing direction of light, frequency or intensity, can actually change the brain.  David got primarily 3 main things out of his visit there.  The doctor was able to determine that blue tinted lenses relax his nervous system.  She also prescribed some prism glasses to make his brain more aware of the environment.  She described to us that his injured brain does not perceive changes in the environment as quickly or as well as an uninjured brain.  She demonstrated to me how the prism glasses exaggerate differences in the environment such as the placement of a picture frame on the wall.  When the prism glasses were on, the picture frame seemed higher on the wall than when looking at it without glasses, therefore making the brain aware of the environment.  He also saw a rehab tech that gave him some exercises to do to improve his hand/eye coordination, making a better connection between his brain and body.  One of the things he had David do was look at his hand while he crumpled a piece of paper while reciting the alphabet or talking in some fashion.  It was incredibly difficult for David.

Thank you to all who prayed for us on this trip.  David had his usual everyday headaches but he didn't have any of his really bad ones at all during our trip.  He even said it was lower on the drive home than usual!  I was expecting him to be in agony on the way home from all the stimulation and different routine.  The Lord also gave me the judgement to get off the road before I killed my family. :P

Updates

As always, we've had a lot going on.

It seems God knows just when to provide help when we need it most.  My parents were here staying with us for 3 weeks.  During those few weeks, we needed them a lot.  A lot of us got the stomach flu and David had a week of horrible headaches.  It is so great to be able to actually stay in bed all day when the stomach flu has descended on you and not worry that the kids are destroying the house or each other and meals are being served! Since they've left, things have simmered down to a dull roar.  But when we were at couple's retreat this weekend, God provided help again through David's brother and wife when we needed it a lot.  God is so kind.

David has been really struggling with headaches.  Just when I think I've figured out something that helps him, it changes.  Right now we're focusing on prayer, neck strengthening, essential oils and nutritional supplements to be our main battle weapons.  The headaches really are a beast.  They are mostly every day, day in, day out.  When David gets the real bad, unbearable headaches, he gets really anxious and doesn't seem to have any coping mechanisms for extreme pain.  I feel so helpless while he cries out for help.  He's no longer tolerating most of the heavy duty pain medicines that they give him at the ER, so it's not a very good option.  I'm learning that over stimulation and too much social activity combined with not enough rest becomes a trigger for bad headaches.  Being a young, naturally active person, this is hard for me to reign things in and say no to too many activities because it will just be a nightmare that's not worth it if I don't.

This last weekend, we were able to join a few other couples at a couples retreat in Minnesota.  It was a challenging weekend in many ways, but worth the time spent building each other up in our marriages.

A few months ago, I started reading a book called The Ghost in my Brain by a man who experienced some devastating effects in his life from a "mere" concussion.  It's a fascinating documentary of life inside his head, reeling from the effects of the concussion.  After almost a decade of struggling with his brain not functioning like it used to, he found some doctors in Chicago that helped him immensely.  I was able to speak with one of them on the phone a few months ago and scheduled an appointment with the optometrist for David next week.  I'm so excited to see what she can do for David.  I hope you'll join me in prayer for these appointments with her, for her to have wisdom how to help David heal more, according to God's will.

In the last few months, I've noticed a few positive gains in David's cognition.  Lately, I've been noticing that when we are driving, he knows where we are and how to get places.  A year ago, when I would ask him if he could tell me how to get to the mall from our house, he wouldn't have a clue.  He would know some street names and highways but not know how to connect them.  He surprised me this weekend by telling me what highways and streets to turn on to get up to the camp.  A couple years ago, we went to family camp at the same place and I knew that his family had gone there lots of times so I thought it might be an automatic thing to know how to get there but he couldn't even tell me what road it was on, let alone directions.  He also surprised me this weekend by telling me that he liked going to speech therapy because it gave me a break from "tending him all day long."  I couldn't believe it.  He usually is always saying he doesn't want to go to therapy and asks his therapists if he can have "nap therapy." haha!  I was just amazed that he realized that I got a break when he left and that I needed or might want that break.  A year and a half ago, he took some neuro psychological tests.  I remember one of the tests specifically.  He did really bad on it.  I could tell he wasn't figuring out patterns and wasn't switching gears in his brain at all.  Well, he was tested again a couple months ago with a lot larger battery of tests over a few weeks time.  The same test came up and he did fantastic on it!  I asked the person administering the test what that particular test was testing and she said executive function.  It was encouraging to me to see that was so significantly improved.  I've also noticed he is becoming more aware of others and can hold a conversation better without fixating on one subject as much.  He is evolving into more and more of a leader in our family and it's wonderful to watch and see how the Lord is shaping him and healing him.  It really is like watching a potter fashion a piece of clay into a beautiful vase.  It's hard to see what the Lord is doing most of the time.  It's uncomfortable and hurtful a lot,  but behind all the molding, pushing and poking,  the Lord is shaping my husband into a man of God who is a man after His own heart.

"And the vessel that he made of clay was marred in the hand of the potter; so he made it again into another vessel, as it seemed good to the potter to make."

Jeremiah 18:4

Single Words

A long-time friend of mine gave me this necklace for my birthday last year.  It has one word engraved on a key: COURAGE.  It made me start to think about single words that have had great impact on me throughout this season of our life since David's accident.

Shortly after David's accident, I received a care package.  One of the things in the care package was another necklace that had the word FAITH on a little pendant.  How I needed more faith in those moments when life seemed so fragile.  Faith that God would be true to His promise to me, that David would be more than just a body sustained by machines.

Later on, I received a card with the word HOPE on the front.  How I needed hope to keep my head above water, to keep my eyes looking up, up above the regressions and slow progress that David made, to the One who created him and sustains life.  Another card came that said COVERED on the front.  It had a picture of an umbrella.  In fact, I still have that one on my desk as a reminder to me that so many people still remember to pray for us.  I can't express how amazing it is to be covered in prayer on a daily basis.  How we need it, how we all need it!  Can you imagine what our lives would be like, if we all were constantly covered in prayer? Not only when Aunt Sally breaks her leg, but when people look like they are doing well.  Pray for people everywhere to learn the love of Christ and His power.  We all desperately need Him to fill our lives with Himself, with His love.

I just share these things to hopefully encourage you that simple things keep people going on their darkest days.

Right now, I need courage to keep going, to keep pushing.  David has a pretty clear schedule right now.  Therapy is at a stand still at the moment.  So that means I have to be the big meanie and push him in his speech, in his daily activities, in his walking, in his cognition, etc...  Some days are easier than others.  I'm learning when to push and when to not push because if I push too much, stay up too late, make him go too many places, he pays for it with a horrible headache.  I pay for it because I treat him and he has to rest extra.  We started back up at the gym and are going to start David riding horses again.  I'm looking forward to getting back to running again and David is wanting to work on swimming.  He's also doing some great floor to wheelchair transfers with me.  We are starting to commit to 20-30 minutes of cognitive rehab at night.  I don't know if it's possible, but David would like to go back to school.  At this point, he is not ready, so I am trying to push his cognitive limits and see if he can make progress in that area.  It really hasn't been an area of focus because we've been spending the last 3-1/2 years trying to get him communicating and moving better.  It's crazy how long things take to heal and reroute after a brain injury but it's amazing how it CAN heal by God's grace!

Finally, my brethren, be strong in the Lord and in the power of His might.

Ephesians 6:10

Broken

A few nights ago I was working on broken things: screwing a zebra head back on, sewing the strap back on David's foot rest, gluing a broken mug, and attaching Velcro to his wheelchair mount for his cell phone.  With a lot of equipment, special devices and accessories, and a toddler who is constantly breaking or destroying things, it's easy to pile up a lot of broken things to fix all the time.

"Christ is building His kingdom with earth’s broken things. Men want only the strong, the successful, the victorious, the unbroken, in building their kingdoms; but God is the God of the unsuccessful, of those who have failed. Heaven is filling with earth’s broken lives, and there is no bruised reed that Christ cannot take and restore to glorious blessedness and beauty. He can take the life crushed by pain or sorrow and make it into a harp whose music shall be all praise. He can lift earth’s saddest failure up to heaven’s glory."
—J. R. Miller

That day that David fell, left him broken in so many ways.  Because his brain has been injured in the place that controls impulses and judgement, his sin seems more transparent than mine.  It seems a lot uglier because he doesn't have the "brakes" anymore (or as much).  Even though it's exasperating and frustrating, I'm thankful because it has shown me, like a mirror, what I am.  It challenges me to seek forgiveness and give out forgiveness when I really don't feel like it.  It forces me to see that I need God and His strength every minute. I am nothing without Him.  It brings me back to the core of the gospel, the power of the Cross.  Brain injury strips a person of any facades. It leaves one raw and open for the world to see the good, the bad and the ugly of your soul.  Sometimes I wonder, with a bit of trepidation, what I would look like to the world if I had a brain injury and my filter was suddenly gone.  Then they would see me for who I really am.  My David is aptly named because, well, he is my Beloved, but he also reminds me of David in the Bible.  When he messes up, he always comes back to his God. He has a pure heart and he never has any malice toward me, even when I'm reacting nastily to situations.  He is always quick to forgive me, which I love. Who doesn't love a man who shows mercy to the undeserving?

One of our caregivers gave me a book  by Amy Carmichael that challenges me in my marriage.  One of the quotes that keeps running through my head lately is this: "If my attitude be one of fear, not faith, about one who has disappointed me; if I say, 'Just what I expected,' if a fall occurs, then I know nothing of Calvary love."  This "Calvary love" is a love I'm forever learning, every moment.  But when I do surrender my fear and replace it with trust in a God who became man to defeat death and sin for me, amazing things can happen.

Lately, it's been good.  We had a few crazy, yucky months after baby was born.  I was struggling with postpartum depression and exhaustion.  David was battling severe headaches and horrible side effects of a couple medications he was trying for the headaches. He had to go to the ER 5 times.  We had 3 speaking/ teaching events at the local tech school in the month of October.  Now, David hasn't been to the ER in over a month and I'm feeling like the fog is lifting and I have more energy.  I started David on some supplements about 3 weeks ago for Omegas, essential oils, food nutrients and vitamins and he's doing really well.  I'm noticing improvements in all areas.  His memory is improving and he's asking more questions that require higher level thinking.  Tonight, I was super impressed.  He was able to infer from eavesdropping on a part of a phone conversation that he needed to pray quietly and then decided to keep the the information he'd inferred to himself instead of blurting it out.  It was amazing.  I have not seen this level of processing and control since before his accident.  He's walking around with just me helping and climbing steps!  He's less anxious and more insightful.  I feel like I'm getting more of the lost puzzle pieces back! :)

"Your Whole World"

I was grocery shopping last week and was in the checkout line with my girls in the cart.  There was a little old man in front of me who had kindly put a divider in between his apple cinnamon Cheerios and my groceries.  He kept looking at us curiously and then finally got the nerve to ask if he could peek under the car seat cover to look at Abi.  He smiled broadly when he saw her sleeping angelically.  Looking at the cart with the girls in it, he said, "That's your whole world right there."  I couldn't help but smile.  It made my heart warm and feel so thankful that God has given me the gift of being a mother to these sweet little girls.  Anyone that knows the oldest one knows she gives us a run for our money but we love them both so much!  I look at them and think, Man, I am so blessed to have these gifts.  They make my life so full of joy.

Ever since Abi was born, David has been blossoming into his "dad role" more and more.  It's really an answer to prayer.  He still is very limited in his ability to "parent" but is interacting more and more with the girls.  I've been praying a lot about this, especially his relationship with Jocelyn.  When she was just a wee babe, David's motor skills were not what they are now.  When I would lay her in his arm so he could hold her, at any cough, sneeze or yawn, his arm would clench around her.  Then when she started walking and getting up close to him, he would attempt to play with her and it would come out as him grabbing her arm.  She got very scared of him and men in general.  She has a few terrific uncles and grandpas that have been inching their way into her little heart and have helped chip away at her "man anxiety". She's slowly realizing Daddy is not as scary and can have fun with him.  He will play blocks with her, kick a big ball back and forth, read books and let her crawl all over him.  He also likes to sing to the girls and teach them songs.  He's really great at remembering lyrics to songs and can tap out the tune on the piano.

Rambling

Everybody who knows my dad, knows he rambles when he speaks.  David has gotten into the habit of asking my dad to ramble when he speaks at church meetings because he loves it. :)  Today, I'm going to walk in my dad's footsteps and ramble a bit.

We've been working on David's walking for over two years now.  You'd think things would have gotten better.  Well, they have to some degree...but that's just it, degrees, millimeters, micrometers...some minuscule measurement.  I've thought, "if only he could walk independently, at least with a walker..." so many times.  Maybe in another few years...But at least he's in a real walker now!  He needs help with his left leg, constant verbal cuing for everything and help keeping his walker straight, but...he's in a real walker! :)

This is him a couple weeks ago.

The PT also had him on the floor to work on floor recovery.  If you don't know what floor recovery is, it's when you teach someone how to get off the floor after they've fallen or somehow ended up on the floor.  David can't do this anywhere near independently but he surprised me how much he could do!

Lately, David has been involved in a job assessment.  He has been working at a local florist, finding out what he can and can't do.  He has amazed me at how tenacious he can be if he's motivated! :)  He is able to fold boxes for floral arrangements with one hand independently.  I couldn't believe how he was able to get the bottom woven together so it didn't need tape.   Last time, I was able to go with him and watch him.  He met a young man that works there who had a brain AVM (arteriovenous malformation) 10 years ago that caused him to become paralyzed on his left side.  He now walks around and uses his left arm.  I hope that he can encourage David.

David and I have been really struggling with some personal things.  I wonder what the Lord has in it.  We went to go see the movie War Room and were deeply encouraged and convicted.  I've felt so many times that we are in real spiritual warfare.  Our enemy is not our spouse or whoever else we have to relate to, it is Satan himself.  We have a caregiver who is involved in Wicca practices and has pentagon symbols all over her.  We need real discernment is this situation.  Do we try to continue to witness the Good News of salvation to her or let her go because we have a household that serves the Lord?  

Almost two weeks ago, I went to the moms group I go to sometimes.  At the end, we were asked to say what our dream vacation would be.  I was holding back tears because we never get to go on real vacations anymore.  Our honeymoon was the last time we went somewhere without vestiges of TBI life lurking in the shadows.  We always have help and we're never a family that isn't weighted down by disability barriers.  It's hard to dream with that reality in your head.  If we want to go anywhere, I have to do extensive planning beyond normal packing and picking hotels and destinations.  I have to make sure the restaurants, hotels, bathrooms, campsites, etc... are handicap accessible.  And even when I do call ahead and reserve a room with a roll-in shower, sometimes I can see them staring blankly across the phone lines because they have no idea what a roll-in shower is and why it would possibly be so important to have that...then I get there after they've assured me they do indeed have one, and it has been reserved to someone else so I have to figure out how to shower my husband without him falling because I don't have enough room in the "accessible" bathroom to transfer him correctly.  I have to make sure I've ordered supplies and medications in time before we leave but not too soon because it won't be authorized yet.  Then making sure I remembered everything that David needs just to spend one night.  If I forgot one item, it could be a disaster.  It's not the same as forgetting wipes or diapers for a baby.  You can just run to the next Wal-Mart and pick more up...not so with some of David's supplies.  If I forget, they don't just sell them at any drug store AND some of them require a prescription from a doctor.  

BUT, there's a thing called (well, some might call it stupidity or bravery)..but however you categorize it...we did something crazy this weekend.  I packed up everyone (David, me, the toddler and the baby) and headed up north for a long weekend and a wedding.  It was just us.  That hasn't ever happened before.  I was nervous but I've been hankering to get away.  Last year, I "dropped" (more like gently lost control) David last summer because the hotel bathroom we were in was less than ideal.  Thankfully, that time, I had help to get him off the floor.  This time, I just asked the Lord to please help me because I had no one if things went south.  Taking a vacation with two kids under the age of 2 and a husband that is dependent is scary and super time consuming.  I mentally prepared for just having loads of time.   I'm not a very good time manager and usually try to pack too many things into too little time but this time I knew that it was going to be a lot so I basically planned on things taking all day! It took 3-4 hours every morning to get everyone ready and packed to get out of the hotel. Crazy! No more 5 minute get-ready sessions like I used to in high school.  With a husband that has communication difficulties and needing help with every aspect of life and a two-year old running around trying to smother her sister and unroll toilet paper plus a nursing baby, it's quite the adventure, let me tell you.  But, the Lord gave us a beautiful autumn weekend and we enjoyed some waterfalls on the north shore in MN and a wedding of two godly people.  The kids slept and behaved well, in general, so, overall, it was the best I could have expected, and actually better.  David got to see some friends he hadn't seen in years.  I felt "whole" for the first time since David's accident.  We always have help.  We always have caregivers or family, which is great to have that help and support, but, it's amazing to feel like we are actually our own family unit for once.  This daily grind that we live can get so suffocating sometimes.  TBI consumes me.  This weekend freed me to some extent.  Even though it was there in the background, it wasn't screaming in my face for attention 24/7.   It felt like we were a semi-normal family for once, a family that went on a vacation.