A Photojournalist View of Snippets of Our Day

A necklace destroyed by the one and only small one

Enjoying a new wildflower that has arrived in our neighborhood lately

This little miss is our sunshine

Because nosey cups, thickened liquids, meds and built up utensils are a daily occurrence 

For some reason she only wants to wear one of these shoes, not two, but one

Because dishes never end

Because caterpillars need to use the potty too

The favorite comfy spot for this guy

The countdown has begun and the littlest little will be arriving soon!

Answered Prayer

We have been having serious caregiving staffing issues.  We have not had any consistent new hires to fill open shifts in almost a year from two companies.  We now have contracts with two other companies to fill the rest of the hours...so we are working with four companies now! Crazy! One of the caregivers started a couple days ago and we really like her so far - smart, sweet and reliable! We will probably meet the other one next week (just two weeks before my due date!!).   Thank you for praying. God hears and answers at the right time.

You can also pray for a safe, healthy delivery of our baby girl in 3 weeks (or whenever she decides to make her grand arrival into this world). 😀

"Why Do Bad Things Happen to Good People?"

This is an age old question.  I don't know a person on this earth who hasn't asked this question out loud or at least thought it to themselves.  This question was posed this last week at a kids camp we were at.  It's an honest question and a lot of people don't have the answer to it.  It's a question that forces itself to the surface, especially when we're suffering and we can't find a "justifiable reason" for it.

Today is our third wedding anniversary.  It's a bittersweet day for me, although each anniversary is better than the last.  The first was celebrated by getting a get-out-of-jail-free card from the nursing home David was residing in and rolling him down the street to a coffee shop, giving him a couple sips of forbidden coffee (because of his swallowing precautions) and sitting in a tiny redwood park for a few minutes while we attempted to have a "conversation" by going through the alphabet and David giving a thumbs up a hundred times.  I had tried to make the day special by wearing the white dress I wore going away from our wedding...but it got soiled moments before we were going to go on our outing by our precious little 2-month old daughter!  Our second anniversary was spent celebrating David's ability to eat normal food and have a bit of a real verbal conversation by having dinner at Red Lobster.  Today we celebrate David's ability to initiate plans for the day without me having to orchestrate everything and the miracle of expecting another baby soon.  Our wedding day was a beautiful day of love and pure joy.  The memories of that day were nothing but good (except for it being 110 degrees and 3 people suffering heat strokes!!).  We pledged our love to each other for better or worse.  The "worse" came sooner than we'd have liked...seven weeks into our blissful life.

I'm learning to love a new man that God has given me.  I've had to learn to love a man that has problems that most people don't imagine having until they are well into their 80's.  I love a man that is becoming a man after God's own heart...David.

Why the suffering, why the emotional roller coaster of these last 3 years to two people that love God?  This is my answer:  Read the story of Adam and Eve in the Garden of Eden.  They chose death and the curse by sinning against God and disobeying Him by eating the forbidden fruit.  So, in this single act, they ushered sin into this world.  We live in a fallen, accursed world full of suffering, pain, sadness, and discouragement.  But God, in His great mercy has provided an escape, a hope of eternal life.  Sending His only Son to die for us showed the world in one amazing act of love, that He had provided a way of redemption and salvation.  We, born in sin, doomed to death and destruction, have been given the option of eternal life through Christ Jesus.  What hope!

"For God so loved the world that He gave His only begotten Son, that whosoever believes on His, will not perish but have eternal life." John 3:16

We may have suffering because of judgement from God because we are living unfaithfully or unrighteously but we also may be suffering for the glory of God.  Whatever the purpose, we can be sure that we can trust in a righteous and trustworthy God and that even though this life in the world may not always be rainbows and lollipops,  if we trust in Jesus as Lord and Savior, we have a hope that no suffering in this world can take away.

Hope

My humanness (is that even a word??) gets the best of me sometimes and my heavenly hope that things will be all better in eternity doesn't always satisfy the longing to have life be a bit better now on this earth.  I'm always researching, trying new things that might help David feel better, function better, live like a 31-year old husband and father should.  I saw a quote yesterday that sums up how I feel on most days, "What we need is more people who specialize in the impossible." --Theodore Roethke.  But we have God, and He is enough.  He does all things well.

But God works through people here and now on this earth.  We've been given a boost of hope by a few professionals lately after a dry season of lots of comments and actions that seemed to imply, "Be thankful for what you have but this is about as good as it gets. Live with it."  A series of bladder infections got David a referral to a urologist who has been very kind and has given some hope for improvement by external means to help his spasms.  A friend of David's posted an article about a man with a brain injury.  I bought his book on Kindle and started reading his story and learned about two fascinating doctors in Chicago area.  I decided to check their websites out and then call them to see how legit they were.  I called one of them today and got her on the phone... no receptionist, no annoying phone tree maze, no answering machine...the real deal!!  She was the coolest, most helpful person I've talked to in a long time that actually seemed interested in David improving more.

"Now the God of hope fill you with all joy and peace in believing, that ye may abound in hope, through the power of the Holy Ghost." Romans 15:13

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.

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.  

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.