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Wednesday, May 20, 2015

A Good Day

Today was a good day.

I'm potty training a toddler and taking care of a disabled husband without my main caregiver this week.  It's crazy around here.  Thanks to my caregiver that comes for 1-1/2 hours in the morning to get David up and dressed, my brother-in-law coming for a few hours to help and my mother-in-law babysitting and helping some this week, it's not as bad as it could be.

David did awesome today.  He did his exercises really well this morning and was able to hold a hands and knees (quadruped) position for a minute without barely any assistance from me.  His push ups were really strong too.  He had a really bad headache last night so didn't sleep too well, so amazed me that he was cognitively and physically strong today.  Usually the next day after a bad headache is a wash.  He gets stuck on about 12 different subjects and will cycle through them endlessly throughout the day but today he did pretty good with staying on topic and even asking some relevant questions today.

We are visiting the neurologist tomorrow and his physiatrist in a few weeks.  Please pray for wisdom for me to ask for the right things for David to aid in his healing.  Some of the big things on my "list" are a solution for his ongoing headaches and regular PT and/or OT to relieve me of the hours of work I do with David on a daily basis just to maintain mobility and slowly progress to functional activities.  In a couple months I will not be able to do this amount of work with him and it is imperative to keeping his headaches and other spasticity/tone related pain and stiffness at a dull roar.  Between that and weekly chiropractic visits, these are the things that I've found to help the most with his pain.  He needs skilled therapy, not just caregivers doing rote exercises.

Monday, May 11, 2015

Comfort and Joy - A Followup

"For we have great joy and consolation in your love, because the hearts of the saints have been refreshed by you, brother."  Philemon 1:7




I think my last blog post may have come across as a pity party to some or a unappreciative commentary on lack of support.  Neither were my intention.

We are so thankful for those (especially family) that do support us in visiting us, babysitting Jocelyn, staying with David so I can take a vacation, financial support, kind gifts, thoughtful cards, and prayer intercession.  The abyss I feel in my heart can only be filled with David and Christ and no amount of support and love from others will fully alleviate that.  I also have been called upon to make huge transitions in the last 3 years and it will just take time to move on.  Every gift of love and time to us is greatly appreciated, far more than you can imagine.  The smallest things mean so much, because living this life makes us value life, sacrifice and time out of your day more than ever before.

I write from my heart and I speak the truth.  And the truth about living with a loved one with a brain injury isn't always pretty.  The media is a far cry from the truth.  You don't just wake up after a coma and everything is dandy.  There a major repercussions from an injury like this for the survivor and caregiver/family alike, no matter how "mild" the brain injury is.  

Friday, May 8, 2015

Barriers

I'm sure many of you have experiences barriers to the life you would like to live.  If you are a missionary, you probably don't have your dream house or the food you're used to.  There are huge cultural differences and language barriers.  In all reality, none of us have the perfect life where everything goes exactly as planned.  The kids don't behave, the spouse isn't living up to your expectations.  Then there's brain injury.

This post isn't meant to make people feel bad for us or me complaining.  I think people need to be educated about what life is like for a severely handicapped young family and to hopefully gain a better understanding so you know how to help people around you better.  Before I started this journey with David, I had no clue what it took to be living a disabled life.  I worked with disabled people all the time for 10 years and had no idea what they went through every day just to get to an appointment on time.

I have the husband, the babies, a comfortable home, adequate finances and wonderful family, of which I am so grateful.  But it's like having a car without wheels.

I never know what a day will bring forth.  In some ways, our life is so scheduled, so repetitive.  Every day, David starts getting ready for the day at 7am.  I go unlock the door for the caregiver and go back to bed for a few more winks unless there is no caregiver or Jocelyn wakes up early.  8am: I start making breakfast for everyone, wash last night's dishes, and clean up.  8:30am:  Caregiver reports to me how morning cares are going and advise accordingly.  8:45am: David comes out for breakfast and usually has a million things on his mind to say.  9:30am:  Either get David on the bed for exercises or off to an appointment with therapy, doctors, psychologist or whoever. 11:45am: Start preparing for lunch and eat lunch at 12pm.  1pm: Nap time for David and Jocelyn, time for me to do paperwork, housecleaning, laundry, prepare food for the week, make phone calls or write emails (ie. catch-up time).  2:30pm: David up from nap and goes to more appointments, walks or rides bike.  5pm: Start making dinner and eat by 6pm.  7pm: Watch a movie. 8pm: Bible time. 8:30pm: Jocelyn bedtime. 9pm: Get David ready for bed.  11pm: Night time meds for David and bedtime for me.  Sleep. Repeat.

And then there's the unexpected that happens more frequently than I'd like: ER or emergency chiropractor visits for severe intractable headaches, bladder infections, incontinence at inopportune times, caregivers quitting or no-showing, new caregivers to train in before important early appointments, unexpected appointments, unexpected social activities or cancellations that nobody bothered to let me know in advance about... It goes on and on.  

I'm constantly having to flex to something new with David; learn a new technique, remember how he reacts to all treatments and medications for the last 3 years,  notice any changes and accurately report them to doctors, ask all the right questions,  advance activities and exercises as David progresses,  make David wear splints and braces and come up with inventive new ideas to keep him from ripping them off.  The newest thing is a neuro stretch technique and then a brace applied to stretch out his calf.  This technique takes at least 20 minutes to do properly and is impossible to do properly with a two-year old crawling all over you and him, pulling on your hair, elbowing your belly, poking your eyeballs and other orifices, etc... And the PT wonders why I haven't been super compliant with this technique?  All the therapists want us to do home programs, which is fine if you don't have a million other therapies to do home programs for too.

Always climbing mountains.  It never ends.  Always coming up with strategies to help me cope/David retrain with behavioral/cognitive problems.  The mundane and unexpected combined with this new (relatively) environment (for me) make it so challenging to "fit" anywhere.  We can't go to most people's homes because they aren't accessible.  I have a hard time relating to women in my stage of life except for having a toddler.  TBI has left me grateful for the smallest things my husband can do for me.  A few days ago, he helped me clean the bathroom sink.  It was so hard for him to even scrub or get his fingers around the sponge.  It took about 5x as long but he was so proud of himself and I was so proud of him trying.  I change light bulbs, unclog drains and toilets, garden, clean gutters, get the cars maintained, build things, take out the trash, change every poopy diaper, clean up vomit, handle finances, squish spiders, shovel snow... I can't be scared of or wimp out on anything or not know how to handle almost everything. I can call my daddy but he's 2,000 miles away.  Women that are married to men who work and are able-bodied take so much for granted.  They may seem like couch potatoes but at least you can have a conversation with them without having to talk about 5 other meaningless topics 10x before the conversation is over (or did it really even begin?).  They can take out the trash or run to the store for a jug of milk, take the colicky baby outside for a few minutes.  They feed themselves and get themselves out of bed and dressed.  It takes over 2 hours to get David up, dressed and fed in the morning.  2-1/2 hours GONE! I spend about 2 hours with David almost every single day doing therapy-related "homework" and the caregivers spend about an hour.  It takes David about 45 minutes to eat a meal.  When he was in the hospital, it took him 1-1/2 to 2 hours to eat a meal so he's made progress in this area!  Disability takes so much time!  People wonder why I don't have time to "take time for myself", why I can't make new friends.  We try really hard to live a "normal" life but our "normal life" takes about 10 times as long to live in the same 24-hour day.

Monday, March 30, 2015

Laughter

Laughter...

It takes all forms...I remember this worker at House of Fabrics when I was a kid that my siblings and I would (to our shame) try to mimic and make fun of her laugh because it sounded more like a Model T having difficulty starting rather than a normal laugh. To us, that was the funniest thing in the world until finally, someone told us if we kept mimicking her, we may end up with the same laugh. As a kid, that was a solemn thought.

Anyways, that little bunny trail was more for your entertainment than what this post is really about.

As you know, the accident has left David with lots of body parts that don't work right. Most of the time it's just plain frustrating and aggravating that they won't just cooperate.  His left side, especially, doesn't pull its weight. When he's on heavy pain meds, they just plain quit working.  Today one of his body parts was not doing what it was supposed to. Instead of being discouraged about it, David started making wry comments about it and we just started chuckling. It felt so good to just laugh and just not worry about stuff.

The chiropractor David has been seeing for a few weeks has started him on a diet. This diet is similar to what people are calling a Paleo diet - supposedly what cavemen ate. Anyways, he can't have grains, sugar, fruit except for berries, avocados, Granny Smith apples, lemons and limes, moderate proteins, no root vegetables like carrots or potatoes, and minimal legumes.  He is supposed to do this diet for two weeks and then ease up a little.  Now I like to cook and bake a lot but this diet sort of takes the wind out of my sails. It's very time consuming because basically everything in a can or package have sugar, grains or starch in them so EVERYTHING has to be from scratch. If you know David, you know that, especially on the road as a lineman, his diet consisted of gallons of coffee, donuts, gas station fare, crunchy tacos from Taco Bell and a V-8 here and there to get his "vegetables" . :)  This diet is killing him. Tonight, we'd had it and majorly cheated. I stopped staring at Pinterest recipes for cauliflower pizza crusts and avocado-based grasshopper pie and loaded us up into our van.  We pigged out at a pizza buffet, stuffing our faces with so much carbs and sugar. It was glorious!  We were just grinning all night.

Laughter makes a day seem alright even when you have a toddler testing the limits of your coronary arteries by playing in rat poison, hand sanitizer and climbing to the highest perches of her bedroom to nap.

Monday, March 23, 2015

Rolling videos

Ok, so this may seem silly to be posting videos of David rolling in bed, but it is an amazing thing that he can do pretty well for the first time since his accident!

Here's the proof!



Sunday, March 15, 2015

My Egypt

Wednesday night David had a severe headache again.  I tried the new pain medication the neurologist prescribed.   I tried peppermint essential oil.  I tried almost every PT headache treatment technique I know (and I've treated a LOT of people with headaches).  NOTHING even made a dent!  I was so angry and frustrated.  We've been trying so many different medications and treatments for David's headaches and nothing is working.  I cried out to God in desperation (and probably a bit of unrighteous fury and frustration) to take David's headaches away.  He has so many challenges, why this incurable, almost constant pain too?  God didn't take his headache away in that moment, so off to the ER we went, where they are getting to know us by name.  It was an unusually busy night at the ER with several critical patients, so a person with a bad headache that's becoming known as a regular visitor gets put on the bottom of the list.  So we waited for several hours and then he got doped up on the regular dose of morphine.  That just made him dopey but no pain relief.  Who doesn't get pain relief from morphine!?  So they gave him another half dose.  That did the trick.  We got home at almost 1 am and I heaved my husband into bed.  I was hoping this was the beginning of a restful night.  Wrong.  I was woken up about every 20-30 minutes by a delirious, anxiety-ridden husband who was, come to find out, having an allergic reaction to morphine.  Great.   Back to square one.  Can't even take him to the ER for headaches now because that's all they have to give him.  It's been 4 days without a headache for David.  I don't know what's happened but God has given him a gift of these beautiful headache-free days!  Anyone who has experienced debilitating headaches for months on end will know what a gift these last few days are.

I believe that God has given me a promise from the beginning of this journey that David will have a quality life and purpose and live to see "...the goodness of the Lord in the land of the living." (Psalms 27:13), not just a promise of a new body in eternity.  My faith is falling short as I wander around in this "wilderness" especially when the effects of the brain injury make progress negligible.  The lack of judgement about safety and lack of understanding about how things that aren't fun or may hurt may help to reach long-term goals, frustrates progress so easily.  I find myself longing for my "Egypt" instead of what God has for us today and in the future.

What is my "Egypt"?  Everything that destroys my contentment in Now and undermines my faith in a big, powerful, amazingly wise God.   I need faith like Caleb and Joshua that God will conquer the giants that look so incredibly big and impossible to beat.  Pray for us in our spiritual, physical and emotional battles against giants every day.


Wednesday, February 25, 2015

And This is the Victory...Faith

I haven't written in awhile.  I've been meaning to write but somehow haven't found the right words or inspiration.  I'm not sure I have it even now but I feel like I should share some things.  Pardon the non-eloquence...

There's this verse in I John that I've been mulling over.  It just amazes me.  I think about how Jesus overcame the world and if He can overcome death and the world and has given us the Holy Spirit (indwelling believers).  If He has done all this, do we not have amazing power through Him, as Christians?  So here's the verse to satisfy your curiosity: "For whatever is born of God overcomes the world.  And this is the victory that has overcome the world -- our faith." I John 5:4  Wow.  Seems so simple...until you have a brain injury that wipes out your moral compass and destroys any control you had or victories you thought you had over sin in your life.  It takes away any initiative to do right, to make good choices.  You see, the frontal lobe is responsible for giving you control over the stuff the comes from the depths of your heart out of your mouth or actions.  When it gets damaged as severely as David's did, it becomes a playground for Satan to attack weaknesses.  BUT, David has God's power available to him to overcome -- even medically impossible injuries to the brain.

I will not go into explicit detail as to David's struggles but I will say that we've been begging God to give him victory because it's destructive.  He's been struggling and praying, struggling and praying for a long time.  Finally, David initiated a move in his life that makes this problem almost non-existent.  This is a miracle!!

On a different note,  David's progress has kind of slowed way down.  We don't get real exciting bursts of progress lately.  We took him off his spasticity medication, hoping he didn't need it anymore but I'm starting to think he does need it.  :(  His walking isn't doing very well.  His therapies decided to taper off for awhile because he wasn't motivated at all and wasn't really making much progress.  We're still doing things at home.  My latest tactic is to try "working from the ground up".  Sort of a NDT (neurodevelopmental technique) approach.  So I'm starting him like a baby develops, starting getting him stronger on his stomach, lifting his head and trunk up, propping himself up on his elbows, pushups, etc... on up the chain.  Right now we're working on balancing in quadruped (hands and knees position).  He did really well today and was able to balance there for about a minute almost by himself.  Since I've changed the caregiver schedule so we don't have a caregiver at night, I do David's cares at night.  We're hitting dressing/undressing hard at night.  He's improving.  It's challenging doing everything with one "good" arm and poor balance but it's getting better and I think he's gaining some confidence.  Lately, the changes I notice are subtle.  His smile is wider and more even (he's got his goofy cheesy smile back!).  He's starting to "get" things and laugh at subtleties more and more.  He's getting better at thinking outside his little bubble and realizing other people have needs and desires that might be different than his own.  He's getting better at knowing how to engage strangers with more varied and appropriate questions and conversation and come up with more novel, realistic ideas or problem-solving tactics that actually work.  (To give to you an idea of how this has improved...last year about this time, when asked to problem-solve, he couldn't, period.  He would just say, "Cry for help!" no matter what or how simple the problem was.) David is still having bad headaches daily.  We've tried a whole gamut of medications, supplements, oils, etc... to try to relieve them, at no avail.  We've started him going to a chiropractor the last two weeks.  Today, he had 4 HOURS of no headache after his adjustment!  His night pain medication worked better too.

A beautiful bouquet from my honey. :)  Thoughtful and generous he is. :)