On Life, Love, and Greiving

Grief

Grief is an ugly...word. A necessary term that envelops so much. Where to even begin? Chances are you've heard about Kübler-Ross and her stages of Death and Dying. You're probably thinking tears, moaning and groaning and crying out....memorial services and a burial. But what about when your grief involves the living? Maybe you've heard the term Anticipatory Grief. That is grieving the loss of someone before they are gone. What happens when you grieve not because someone has died but because a dream or a lifestyle or a future is not as anticipated? Are you following?

Denial, Anger, Bargaining, Depression, & Acceptance

Grief doesn't just mean that a loved one has died or is dying. I've explained to so many people over the years that the grief process is like a ladder....those stages of death and dying can be conquered and yet one can fall back down just to have to climb up them again. Denial, Anger, Bargaining, Depression, & Acceptance are the familiar stages we discuss or lay out to conquer. Yet, have you ever grieved over a life that didn't turn out like you planned? A future of hopes and dreams cut short or changed from what you anticipated? A child that strayed down a difficult path. A separation of relationship? In talking about our caregiver journeys we mention grief a fair amount. 

A few years ago, I wrote a Blog titled, "When my White Picket Fence no longer Matched the American Dream" and outlined how facing our difficult our circumstances had been challenging. Different from that normal life we envision.

Turns out I realized a while back that I'd been grieving for a long time. I'd been mourning the things that weren't set to my imagined or anticipated ideals. I wanted to be in control of so much. Of my life, of my career, of my family and our future. Grief isn't just something that you get over either. Whether you've literally lost someone close or whether you are in mourning over something else, there is no magical switch that we can flip to get over it or shake it off. Sure, there are things we can do to alleviate the symptoms and help us move on....but grief has no timetable. When we are dealing with lifelong illnesses, injuries, and disabilities, that process of grief can come and go for decades.

Hope, Dreams, & Plans

Just because you've lost, mourned and grieved doesn't mean that you can't have hope. I have a substantial amount of hope. We have an increasing amount of good days, or rather I choose to see them that way. We have choices about our attitude and outlook on our day, our week, our schedule, and our future. We can embrace life and make decisions that give us positive outcomes for our families. We can travel, take trips, visit friends and family, reach out and hold each others hand, and just overall relish in the delight of the simple things without getting caught up in what we wish were different.

I was such an independent child and student growing up. I got good grades. I studied hard. I finished an entire year of college before I ever graduated from High School. I wanted to make a difference in the world. My parents always taught me I could be anything I wanted to be. I went to college, got three degrees, and bought a business in my early 20's. I bought a house while my husband was deployed. He literally came home from his last deployment to a home he'd only seen in photos and a new business in a town he'd only visited once.  We had big aspirations.

Wounds of War & Beyond

Leaving to go back to Iraq in 2004 after two weeks home 

John came home from war wounded. Wounded in more ways than we would know. You can't even begin to treat things that you don't know about. He hid his symptoms best he could. He didn't want to talk about the horrific events and accidents that happened. So, we spent years getting diagnoses and help for injuries related to combat.

In the meantime, We had two boys....beautiful handsome boys. They woke frequently and secretly I was envious of all the moms on Facebook posting how their infants were sleeping so well. Mine didn't sleep well for years. I lost sleep. I have been tired for the better part of a decade. We also had two miscarriages. Those happened before the dawn of our social media appearance so many don't know about that. But that was a struggle. For a while, it was difficult to go to friends baby showers.

With two young boys and a husband with disabilities,  life started beating me up. It was brutal. I couldn't work like I wanted to. I had to hire people to do the jobs that I should be able to do. I had to depend on others to do work that I was responsible for and ultimately, I had to be content with letting things go. I had to let a lot of things go. I had to start staying at home more. While once I had a full time nanny and housekeeper, I had to spend a season focusing more on my own family. Stepping back from my career.  Giving up my business. Giving up many of my personal indulgences.  Even my me time of teaching had to go. It was hard.

There was a season where I literally couldn't always even make it to the store when we needed milk or toilet paper and a few people were kind enough to randomly ask if they could assist to bring us things. Some just showing up at times with a hot and home cooked meal.  God Bless them. My family has stepped up and helped more than I can ever count, mention, or repay.

I've cried over life. I've cried over situations. I've shook my head at diagnoses and the calendars as they fill with appointments, wondering how we juggle it all. I've grieved over that normalcy of life that we missed. I've felt inferior at times in dealing with the enormity of existence and responsibility of caring for my family. 

In Memory of the Picket Fence

After one of those moments of grief and wiping tears last year, my husband randomly asked, "Do we need to get the truck and go to the store and get you some picket fence?"

"You read my blog!" I said as I wiped some tears. "No. I really don't need it. It wouldn't match our house now anyway," I told him. And we kept driving to our destination.

I don't have to have a white picket fence to have hope in our future or to better avoid any future moments of grief as they may hit without warning. Part of my picket fence is dead and buried and the other part still stands in our memories. 

We are doing well right now. This year, 2017, has been a year of change and transition for us. Life still presents its challenges but we tackle them. Hopefully we tackle them with grace and love and not like a stumbling circus act on stilts.  If you're reading this and have loved and experienced lost.... bless you. If you're reading this and loved and stuck somewhere in that grief jungle... bless you. Know that you are not alone and there is Hope going through it and on the other side.

When life gives you...Caregiving

I would dare say anyone signs up for this life. While many of us are military spouses or parents, we know well the worst case scenarios that might happen when our loved ones go off to war. But in reality, when the days, weeks, months, and years after the war and accidents have come and gone, many of us search for peace and joy in the smallest of things.

Maybe we didn't sign up for it, but we are Caregivers.

We are the wives, mothers, children, spouses, friends, and more who fill the gaps for our loved ones. We support them. We may be their eyes, ears, hands, companions, and chauffeurs. Often we wear the hat of cook and cleaner, master scheduler of the home, taxi driver for the kids, and accountant of our finances.

Life can suck us dry if we let it. Life throws hard punches and we fight back. How do we fight back? We advocate for our veteran...for the person we provide care for. We assist them in everything they need help with from dressing and dishing out medicine, to helping him or her be more independent.

So what can we do for ourselves when we feel like we are worn thin? We can take a long and steamy bath. Take a moment. Take two minutes to relax. Read a good book or sit outside and listen to the birds. Relish our cup of coffee with no interruptions.

Take Two

Today I can slice a lemon for my glass of water, savor the fresh, clean smell as I cut it, squeeze all the juice out that I can and add it to a pretty pitcher or glass. Enjoy it. Experience it. I could hastily run the tap quickly and guzzle a plastic cup full of aqua down, as I do frequently...or I can turn this everyday moment into a treat.

I can have my cup of coffee without interruption before everyone else wakes. I can bask in the almost
silence around me. I can experience the warmness from my hands holding the cup to the creamy liquid coursing down my throat as I enjoy the moment I am making for me....just me.

What's going on around you at this very moment?

Do you hear the dishwasher or the hum of the air conditioner? Do you hear chirping outside your window? Is the TV playing in a room close by? Is a child making noise or are cars zooming by within earshot?

Take a moment to ground yourself in the present. Be aware. Be mindful. Experience life and find some way to make the average extraordinary. Find a way to find peace and joy in your day....even if it only takes two minutes.

How Conditional is Your Love?

Today's society is so focused on rewards based on performance.  We offer incentives for work based performance, offering bonuses and pay grades based on ability, productivity, sales, and an employee's "worth."  We give and get grades in school based on the quality and accuracy of the assignment.  Parents may give money to their children based on the chores or tasks that they complete.  

So how do we rank our relationships?

 

Do we have unconditional love for our relationships with our spouse and kids or do we place that love in a hierarchy of how much we love them or the contingencies we place on that love.  It's easy to think we give unconditional love to our spouse, children, or others in our lives....but look close and examine the reality.  I think of the divorce rate in America and how it has risen over the last few decades.  Obviously, there are plenty of valid reasons people get divorced, but I also think that many people don't want to put for the effort and invest in their relationships.  They may find that they have conditions to their love or maybe their spouse has conditions to the relationship or love.  

Of course, we desire healthy dual-involved relationships. Psychologist Robert Sternberg used the the term Consummate Love and Carl Rogers used the term, unconditional positive regard. Sternberg's term includes the combination of passion, intimacy, and commitment while Roger's emphasized that we love our clients or each other in spite of their actions and behaviors.  We love the person regardless of his or her actions. 

Now to the crux of my point.  Do you love your spouse if they are successful and put lots of money in the bank? Or can you also give the same amount of love if they loose a job, go in debt, and can't provide for the family despite struggles and trying?  Do you love your kids if they keep everything neat and clean, fuss and fight, or can you find that same love when chaos, disorder, and riots break out?  

What about in terms of sickness and health? 

Do you love your spouse through a week long flu? How about a 3 month recovery from an accident? What about a lifelong struggle with chronic and debilitating illness and injury?  Do you love them and provide physically and give emtional support during the week? During the 3 months? 10 years? 25 years? Do you have to draw a line somewhere believing that you've put forth more effort than you bargained for?

Ten years ago, I purposely took out the wedding vows that said, "in sickness and health, for ricer and poorer...." etc. I didn't want to speak those downsides over our marriage because for me it was a given that we'd love each other regardless. Sick = love. Well = love. Rich = love. Poor = love.  Anyway, whatever circumstance, I was committed to love. I didn't want to weigh that down with vows. Now you may think that's a bit eccentric but that's the way I looked at it and so far we've had our good times and bad. We've battled plenty of sickness and disability from both sides and we've had moments our bank account was plentiful and like most, we've had moments we were in the red or very close, pinching pennies and counting dollars.

It is so easy for families struggling with disabilities to give up. To just quit or walk away thinking that they are giving more than they are getting. It is so easy for someone to think they've had enough of their partner's PTSD, of their anger, of their issues.  It is possible to feel overwhelmed with physical symptoms of mobility issues, of brain injuries, and even deformities.  Do I love you only while you are able to love me as much back and I can see that daily? Do I love you regardless of your inability to do the dishes, take the trash out? Do I love you in spite of the fact that you haven't been able to work in years? Can you keep loving someone who has trouble communicating but can squeeze your hand occasionally?  

Do we love our kids when they hug us and squeeze us and say, "I love you."  Or can we also find the wherewithal to love them when they are defiant, scream that they hate us, and run slamming the door behind them.  Do we love the spouse that seems to take and not give? Do we keep loving unconditionally when one needs constant supervision and care?

I'm not saying we don't have our moments where we want to scream and throw up the white flag.  

Its quite human to feel frustrated and defeated. But can you forgive? Can you rise above these moments and continue to love unconditionally?  Can you love those that persecute you? Can you love those that seem to hate you and not reciprocate positive emotion?  Can you love your neighbor, your children, your spouse in spite of their actions and through their unattractive behaviors?  

It is most assuredly not as easy as it seems and it takes grace, patience, and lots of love.  I encourage you to keep loving. To strive to love unconditionally.

If you can push your conditions aside and UN-quantify your love, my guess is that you'll be happier giving of yourself, your time, your energy, and your love. 

Don't Judge a Book by its Cover Photo

For several years, John refused to take pictures. He wouldn't get in a Christmas photo. He didn't want you to even aim a camera at him. The auto reflex of a hand flying up to block his face from the camera was almost instantaneous. One of my favorite family pics was us at Disney, but he was in his wheelchair. When I put it on a Christmas photo card collage, he refused for me to send them out. He was embarrassed.

Then, one day, something clicked. He was ok with photos. He was ok with trips.  Wheelchair or on his two legs. Why? Because, he said, "I want my boys to remember that I tried to have fun with them."

John's memory started declining after his last deployment.  It was on that deployment that he received his Purple Heart for wounds from an IED blast that decommissioned his Bradley Fighting Vehicle.  He told me this week, that his vehicle was subjected to 113 IED/Explosions prior to that final one that took it out and left him with a Traumatic Brain Injury (TBI)

Trip to Universal

Not only did John want the boys to remember the times that he attempted to go places, but he also wanted photos to show him that he had been places, done things, and got the photo to prove it.  Not a bad idea, considering two years ago, he and I took a weekend getaway that he still has no recollection of.

MRIs have shown that his brain is loosing mass and volume as a result of the brain injury.  It is basically shrinking. Therefore, he experiences dementia like symptoms at times.  Sometimes he doesn't remember that he's eaten, sometimes he can't recall facts.

New research is focusing on younger veterans and their caregivers and many of those caregivers have been reluctant to discuss their life with others.  They hide it well.  PTSD/TBI are thought of as invisible illnesses and many like John, can look and function "normal" for limited times when passerby's would not think they have severe disabilities.

Posing for a crazy picture
Sleep vs. Picking noses!
Oh my!

So while caregivers are gaining recognition by congress, non-profits, the Veteran's Administration, and perhaps other family and friends, there may be more scrutiny towards these invisible disabilities.  For example, private groups on Facebook or other social media are available for vets and caregivers and many non-profits are reaching out to this generation of wounded and caregivers.  Yet, some of those among them and in society are ridiculing and making judgments based on appearances or a moment's interactions, or based on their Facebook feed or photos.

Look at my photos on Facebook and you'll find a combination of me, my husband, my kids, trips we've taken, and so forth.  Now, John will agree to put his arm around me and smile, usually.  But what you don't see is the before, after, and in between.  

EPCOT 2014 - John asked for a photo and
waited for the PhotoPass Photog to take it.

When you look at my photo from last week's one day trip to EPCOT, you see we appear normal and smiling. What you don't see is that after only 15 minutes of being in the park, he was profusely sweating from physical pain and discomfort of being around people, in closer proximity than was comfortable. What you don't see is that immediately after lunch, we went back to the room to take pain meds and to rest. Sleep. Sleep for two hours with a bathroom break and a seizure in between while he was sitting on the toilet. What got my attention was the nose bleed from his right nostril, as characteristic of his seizures, splattering on the floor.

We made it back to the park but we couldn't take the complimentary bus transportation because he didn't feel like he could wait for a bus to run if he needed to come back sooner. At dinner, we had to be selective in where to sit in relation to his back towards the least amount of people or so that he could see the door or windows.  He couldn't focus on the menu. He couldn't see it. Headache commenced.  I ordered his food for him. A waiter dropped dishes at dinner, he jumped. Where do we sit in the American Pavilion for the show? Luckily there were only 6 others in the last showing of the evening and that was comfortable, as none looked like a stereotypical terrorist.  All clear. Relax for a few minutes.

Then sleep for almost the entirety of the next three days as the two nights away was too mentally and physically exhausting.

Great Photo but you missed the
before and after. Thanks for
your perseverance 

In other events, my current profile photo where John is wearing his Purple Heart hat, was taken after we attended two consecutive MOPH events. Before the first one, he had a seizure before even getting out of bed that morning.  Trouble walking, trouble moving, dizzy, and in severe pain from the muscle contractions from the seizures. Before the first presentation, he stood for some time, walked without ambulation assistance, and with sweat dripping by the handkerchief fulls, he persevered.  He refused to quit, refused to sit for the longest time, and presented his awards.  Only a couple people were cognizant enough to see that despite his nice jacket, hat adorned with medals, and freshly shaven face (around the goatee, of course) that he was in severe pain.  Then again, he crashed for about two days from the pain and exhaustion of the events. I had to assist him in sitting up, had to help him steady himself out of the floor when he fell, and had to assist with other things as he was mostly confined to bed for the remainder of the week.

So before you are quick to judge about someone else's injuries or their need for disability or compensation…I'd urge you to think hard about all that you might not be seeing.  These vets like to look like they are doing good when people see them.  They really, in most cases, don't want sympathy. They just want to be treated like anyone else.  Hopefully, you will never hear me passing judgment on someone because of their illness or injury and I'd urge you to do the same. If you had to walk a mile in their shoes…you would likely be very surprised.

Thank a solder, honor a hero.

I fell off the blog wagon. Where have we been?

It feels like I fell off the blogging wagon. For a while I blogged fairly consistently about our life, John's health, his struggles and victories with his service connected issues like his traumatic brain injury, seizures, PTSD, headaches, falls, and everything life was sending our way.

Then I pretty much just stopped. I hid a few posts. I quit writing for a while.

Why? There's not necessarily a simple answer. Did things suddenly get better so we had no bad health and sob stories to pull at your heart strings and make the fury of veteran injustice rise? Not quite. Did things get worse so we had to focus more on health and doing the best we can? Sort of. Did we pull the uber personal posts for privacy? Somewhat. Did I just not have time to focus on sharing our journey? Yes.

John's had a series of good and bad days, as typical. He's on a mission now though, a mission to help

John and the Military Order of the Purple Heart
Chapter 1000, with the help of a Purple Heart
Service Foundation Grant, provides countless
care packages to homeless vets and vets in need.

other vets. That is literally some days the only thing that drives him to get out of bed. Seriously. With the traumatic brain injury he gets tired easily. The slightest stimulation will cause him to need serious rest. When we have to go somewhere, he sleeps a lot before, and he crashes afterward. Does he look like he can manage when he's out in public….yes. Most of the time he does or he simply will not get out.  Just remember that all wounds aren't visible and that chances are after he has been out in public, on these missions to help others, chances are it was so overly stimulating and physically exhausting that he crashed after. Yes, perhaps he falls, sleeps most definitely, and seizures with his typical nose bleeds are likely.  Does this stop him on his new mission? Absolutely not.

Part of John's disability is a delusion of his disability.  Sure, he knows the diagnoses that he has, but often he doesn't accurately judge what he can or can't do safely.  He may think he could drive a few states away to meet a friend…when in actuality he couldn't completely make it to a grocery store and back independently.

We tag along together. He's more aware of his limitations now. We're a team. When he has trouble coming up with the right words or trouble saying what he means, I help fill in the blanks. When he gets to where he can hardly stand any longer, I find him a chair. I move it behind him. We have to be more organized to make things work right. By that, I don't mean my house is spotless or uber clean. I mean, he has to write down events, appointments, anything he must remember. iPhone apps help him with that. I help him with that.

So, life's not always rosy, but it isn't horrible either. It is different and we manage best we can. We have a great system of support that comes to our aid when we need them. We couldn't make this journey alone. We're grateful for the positives. If you are struggling, I encourage you to find meaning in something and find a mission.  Find a mission to help someone or something that can benefit from your help. Chances are, you will be glad you did and you might just get the bigger blessing.

You can find out more about the Military Order of the Purple Heart by clicking here.

What to Pack!?

As you can see we like to go and travel is our therapy.  Like many packing and unpacking can be the
most aggravating parts of travel and vacations.  I typically try to pack in ways that will help me out and be efficient for packing and traveling.

Right now, we are packing for a trip to a week long conference in Orlando for wounded veterans and their families.  We are fortunate to have this experience and I'm so excited that I can hardly contain myself!

Here are a few of my tips:

• Start packing a few days early for some items that you won't need until travel.
• I pack underwear, pajamas, socks, and bathing suits first (yes, I'm packing swimwear for a December trip to Florida because it is 80 degrees and pools are heated)
• Next, I pack non perishable food items in a separate bag that is easily accessible in the vehicle.
• I pack things like peanut butter and bread, gummy snacks, dried fruit, bottled water and drinks, applesauce, and perhaps oatmeal, cereal, and other easy snacks.
• Then, I pack meds in a container that I can easily get to.  I typically keep meds together in a clear box with lid so they travel well.  
• I get the kids to pick a couple of toys, books, and coloring activity items to carry along.  This cuts down on the impulsive buys of unnecessary theme park purchases.  

•  Example: pack princess gear for girls or swords and pirate stuff for boys or take a couple favorite plush items for snuggling
• Pack items like Disney Pins, Vinylmations, MagicBands, lanyards, cameras, camcorders, and any other items you need to take to the parks.
• Lastly, I pack the bulk of our bags
• Add clothes and also pack hygiene bags
• I usually forget a few things like phone chargers, sunglasses or computer/iPad chargers, a pair of shoes, etc and leave a tote bag handy to toss those items in at the last minute. 

I also pack a different bag if we are overnight at a different location other than our main destination.  For this next week's trip, we are starting off with two days with family and ending with a Disney hotel at the end of our Universal Orlando trip. So I'll back a single clothes bag for everyone in the family for each of these separate overnights so we don't have to lug in everyone's luggage for a 24-48 hour stay.

Happy Packing!

(By the way dear friends and readers....I am now a travel agent complete with Disney College of Knowledge and Universal Specialist certification and would love to help you plan and book your next trip! email me at aflener1@gmail.com for info)

Breathe - When All Else Fails

 

I have started writing this blog several times in my head....but then I don't type it out. 

I started typing and I back up and delete it. Then I get up and walk away. 

I come back.

 

I've not said much lately as far as our usual transparency of "how are you" and "how are things going."  Sometimes people assume no news is good news and others know silence usually means things are chaoitic and too insane to sit back and type a blog. 

The last month has been filled with more medical appointments than I have even kept a count of.  Most weeks, each day has been consumed with a pre-op, post-op, surgery day, check up day, x-ray day, hospital infusion day, or something to occupy the twenty four hours in our days. 

For some reason, the oldest child dislikes school.  Each morning begins with a fight of finding the right blue jeans and underwear combination that fits to his liking.  Then his anxiety soars at drop off time because he wants you to walk him to the door.  The youngest, age 4, has had to miss about as many days of preschool as he has been able to attend these first few weeks becuase of our many appointments and obligations.  So now he clings at my leg and doesn't want to let go for school most days too. The oldest has begged for weeks for me to homeschool him.

The kids don't want stay in a room in our home if an adult is not with them.  The won't go to the bathroom alone, and I can't go to the bathroom alone either, most of the time.  They don't want to go to sleep in their bed, unless you lay down and go to sleep with them.  They wake up. They run to find you.  Elbows and knees proceed to jab and poke for an uncomfortable night of restless sleep.  One pees on the bed.

Laundry to do.  Another night.  Another wake up.  Same story.  Laundry. Coffee.  Cary on.  Repeat.

John has been in alot of pain.  For some reason the oddness of the last few weeks has prompted him to not take meds regularly.  So, Monday he played golf....best game ever.  Then Tuesday through Friday he was unable to get out of bed.  Friday evening he wanted to get out and we rode to town.  He asked two or three times for the kids to be quiet.  They didn't quite down enough to his liking.  He said, "I've had enough" and leaped from the car. 

The kids were upset but took it in stride. I pulled off the road but he refused to get back in the car.  After walking about .4 mile, an officer friend of John's picked him up and took him home.  John threw the contents of his pockets on the floor and went to rest in quiet and calm down. 

Two days prior, as we were getting ready to go to get his stiches out, I reminded him to hurry and put his pants on.  He was already wearing his shoes.  So I reminded him where his bottoms were.  I get the kids out the door and turn back to turn off the lights, like moms do.  When I got outside to unlock the car for them, there John was standing beside the car in his underwear.  He was ready to go, so he said.  Yet, oblivious to the fact he wasn't dressed.  Sigh. Turn around, go back.  Buckle kids. Go to school. Drive 4 hours to doctor.  Come home. Repeat. 

I suppose I should be stressed out beyond belief, but I'm not.  I wish I could get more done.  I wish I had more time for me.  I wish my house stayed cleaner and neater and long for the day when the kids will help pick up more than they throw down.  However, in the meantime, the stress won't make it better.  Worry and anxity won't create a better situation.  I have to be as calm as I can.  I have to carry on.  I have to breathe. I have to pray. 

 

All the while my breath is in me, and the spirit of God is in my nostrils; My lips shall not speak wickedness, nor my tongue utter deceit. Job 27: 3-4

 

I feel like I can relate a lot with Job lately.  I have to deal with my reality of life.  When all else fails....take a deep breath and just be.  Just be.  Just be as thankful as you can be.  Be as content and forgiving as possible.  Be seeking how to live more fully and aware of life.  Be hopeful.  Be prayerful. Be fervent.  Be loving.  Be kind. 

And at the time when you feel you need a break from reality...cry and greive.  Then when all else fails....take a deep breath and... Repeat.

Discouraged or Thankful? That is the Question.

It's been one of those days.
We all have them.
Sometimes it just seems ours pound us relentlessly. It would be so easy to be discouraged yet we pick up and carry on.  We muster up enough gusto and stamina to get through our situations.  I am very thankful for family who help out in whatever ways they can.  Today, Mom has done laundry and dishes, cleaned around the house, and Papa came to get the kiddos for a last hooray before school. 

How did your day start?

My day began with a quick trip to the doctor to get my soft cast on my broke foot re-wrapped.  I came home to one kid still sleeping and John and the youngest were watching TV.  Soon after I came back, I heard John calling, "Amanda! Where's the bathroom? How do I get to the bathroom?"  I went to the living room and found him screening the walls, moving his head around the room in a panic.  I helped him to the bathroom as he quizzed me.  "Who's house is this? Where are we at?"

After I told him it was our house and we had lived here for over four years, he turned to our 6-year old son and asked him, "Who's house is this?" 

Gabriel told him, "It's our house, Daddy."

In almost disbelief, John chose to lay on our bed, asking "Who's room is this? Who's bed is this. Are you kidding me?"

I called mom and asked her to come over to help get the kids dressed and such.  John asked if she was coming to take us to our house. 

Matthew 6:27 NIV
Can any one of you by worrying add a single hour to your life?

How do you even respond?

You could panic.  Likely, it wouldn't do any good.  We all calmly dealt with the unusual morning we were presented with.  Our kids are terrific.  They really adapt and deal with our unique situations better than most adults would.  What would you do if your 37 year old spouse suddenly woke up disoriented to the point that he or she didn't recognize their surroundings?  Thankfully this doesn't happen often.  But, it happens.

The boys loved John, hugged him, and we tried to assure him that this was indeed our house and reorient him as best we could.

Philippians 4:6 International Standard Version

Never worry about anything. Instead, in every situation let your petitions be made known to God through prayers and requests, with thanksgiving.

 

Why choose Thankfulness?

Why not? Does it really do any good to be discouraged?  Try to focus on the positives.  These are the precise moments that make us realize that we must cherish the good times,

This week's quick trip to Universal

the good days, the good moments, the fleeting precious moments that we can experience and embrace as a family. 

For John, it is important that we do things with the kids that they can look back on and know that he tried to have good memories with them, even if he is unable to remember them.  He and I took a vacation a year and a half ago that he really doesn't remember.  Yet, I know the effort he made to make sure that we had a getaway just for us.  Our children will have memories and photos to look back on after the images are no longer in John's recollection. 

Our spontaneous trips provide an escape and a vital key to him believing that he is trying his best to show them he loves them, wants them to know that he cares, and put forth the effort when possible.

Thankfully not every day is like today.  Not every day is a cake walk.  Thankfully we have good experiences that we can cherish and we can hold onto the unconditional love that we have.  We are blessed with a great family.

Whether your family if filled with members who have special needs or just average folks, love them, cherish them, and tell them how much they mean. 

I Thessalonians 5: 15-18 NIV

Make sure that nobody pays back wrong for wrong, but always strive to do what is good for each other and for everyone else. 16. Rejoice always, 17. pray continually, 18. give thanks in all circumstances; for this is God’s will for you in Christ Jesus.

My Amazon Subscribe and Save Deals

I've started taking advantage of my Amazon Prime account by ordering things in to my business that are more cost effective than a shopping trip.  I have done a substantial bit of research to make sure I'm getting a good deal and thought I'd pass along what I've found.  With a Prime account and a Subscribe and Save subscription you can choose the items you want and how often you want them delivered.  With 1-4 items delivered on the same order you get a 15% discount.  With 5 or more items you get a 20% discount.  You can cancel or put orders on hold at any time. 

One of the best deals I found was on 48 double rolls of toilet paper.  The cost with the 20% off was $18.10 delivered each month. That's alot of toilet paper but it is easier and more cost effective than loading two buggies each week with paper products. This way they are delivered to our door and I don't have to pay payroll costs for someone to go get them.  Now, don't get me wrong becuase I'm all about keeping money local when I can but with me having to stay at home with my husband, I'm trying to save as much as possible too. 

Items scheduled to arrive in August include (Prices subject to change and Subscription includes 20%off):

• Purex Ultra Packs Laundry Detergent
•  $6.97 or $5.58 SUBSCRIPTION
•  Bob's Red Mill Flour 4- 5 lb bags 
•  $13.91 SUBSCRIPTION (not currently in stock since I put it on my list)
•  Mr Clean Magic Eraser
• $4.97 or $3.98 SUBSCRIPTION
•  Cascade Dish Detergent Packs, 85 ct
•  $15.46 or $12.37 SUBSCRIPTION
•  Angel Soft 48 Double Rolls
•  $22.63 or $18.10 SUBSCRIPTION
•  Platex Large Gloves
•  $2.15 or $1.72 SUBSCRIPTION
•  Scott Naturals 6 large rolls paper towels
•  $9.22 or $7.38 SUBSCRIPTION
•  Lysol Disinfectant Spray, 19 oz
•  $4.88 or $3.90 SUBSCRIPTION
• Nestle Carnation Instant Dry Milk
• $10.61 or $8.49 SUBSCRIPTION
• Microwave Pork Rinds, case of 18
• $18.99 or $15.19 SUBSCRIPTION

Some of the items' regular prices are already discounted.  Remember that Amazon prices are subject to change and I suggest checking your subscriptions a few days to a week before they are scheduled to make sure you don't miss out on an out of stock item.  I'd hate to miss my 20% off if something wasn't in stock.  That's why I added smaller "filler"items that we use, just in case.  

Maybe you don't want to buy that much TP but you can always search for a smaller amount.  I just thought I'd  share my hard work with you so you could take advantage of some savings.



(Disclosure: This post may contain contain Affiliate links)

Frustrating Journey - C&P Exams Tomorrow

Many friends know we have to go to Atlanta tomorrow for John's Compensation Exam.  This is nerve wracking for me on several levels. First, last year's exam was incomplete and not at all accurate.  We were told after the fact that the examiner was not "qualified" to conduct TBI/PTSD exams.  She didn't adequately fill out the papers, didn't submit them back to the VA in the allocated time frame, and it was a miserable experience.  The VA only sent about 10 pages of medical records (out of 300+ for the year) for the examiner to review.  They didn't record the actual responses John gave for the complaints and disabilities being evaluated.  It was such a frustrating experience driving all the way to Columbus for three separate days that just before his PTSD evaluation John jumped out of the moving truck on the freeway.  Yes, you just read that right.  I knew he was agitated and had slowed down and pulled over as much as I could before he bounded out of the truck, but it happened.  I eventually coaxed him back into the vehicle and we went for the remainder of the exam.  You better believe I was shaken but guess what....even after that and all the other details of his symptoms and daily life, the examiner reported that John didn't have any significant difficulty on 14 out of the 16 facets listed.  Yet, the VA exam at the VA hospital by two collaborating physicians on the same 16 facets showed EXTREME difficulty in 14 out of the 16 facets measured and some difficulty on the other two. 

So, our financial well being and John's access to more local medical care literally lies in the hands of someone we will see for about 3 hours tomorrow.  Dear Lord, I really pray they accurately record what is real for us.  We're not asking for something he doesn't deserve.  We just want what is needful and appropriate.  Did you know that between the 80% compensation that he presently gets and the 100% that he needs, there is a $1400+ a month difference? Yes. Stark difference. The price of our mortgage and taxes each month, actually.

Even though the VA determined over two years ago that John needed a full time caregiver, and gave me a stipend and health benefits, they have also denied his compensation for Aid and Attendance stating he needs no assistance or care! Yes, they did. Even though his neurologist at the time we applied (Sept. 2011) wrote "Needs Constant Supervision" across the bottom of the application.  So John is frustrated that the VA pays me more when he's the "suffering" one. Right now we can't get close medical care for John.  We have to drive 1.5 hours for emergency care and 3.5 hours for regular care.  Even though the VA allows me ChampVA health care insurance and I can access whatever resources I need close to home because I take care of him.  For me it is great. Yet, it shows how warped the system is because John can't get the same care. 

John's supposedly "expedited" Social Security Disability was denied because the VA hadn't determined him "Unemployable." So now we've waited 12 months on an appeal that hasn't made any progress.  John's Unemployability was denied by the VA based on the fact that they didn't see any barriers to employment.  Yet, he now hasn't worked in 23 months and the Vocational Rehab division has him enrolled in the Independent Living division because they determined him to not be suited for employment or education.  So, they have given him new can openers, jar openers, pens, eating utensils, etc.  so he can be more independent when he looses feeling in his hands.  They gave him a vacuum and a steam mop, a couch cane for assistance getting up, and a pill container that alarms and talks to him.  Still we can't get the home renovations approved.  The housing grant was denied  because John has a brain injury and seizures. Since he hasn't lost a limb or eyesight, they say we are out of luck and have to struggle. (See "We are the VA Backlog" blog)

John fell several times this week again.  He had a multitude of seizures again.  We can't get his oversized wheelchair through the door to our bedroom or our toilet closet or our clothes closet.  This week the most frustrating was when after helping him to the bathroom he had a seizure and fell against the door closing it and blocking my way in.  We were helpless to help him.  With the exception of a few weeks this year, this has been an almost every week struggle.  For a while last year we left several of the doors in our home off.  We took them off the hinges and completely removed them so EMTs could get John out on a couple occasions and John could maneuver easier. 

Now, however after a few bills the VA refuses to pay at our local hospital, John refuses to go there.  A few months ago after a bad fall my grandfather took him to the hospital and because he didn't have insurance they acted like they didn't want to treat him.  They gave him one shot and immediately brought discharge papers, even though it didn't relieve any of his pain.  They refused to call the VA hospital for transfer or treatment, and we wound up driving the 90+ miles to the nearest VA facility as John had to have some relief from the pain after the fall on the tile floor. 

Oh I digress.  If you're still reading my frustrations then "Thanks" or "I'm sorry." I am not sure what is more appropriate.  Today, I needed to vent.  I'm concerned.  I'm scared.  I fear that tomorrow's exams will not be adequate and we'll have to keep fighting for appeals.  The congressman's office requesting expedited case due to hardship didn't work, the Voc Rehab putting in requests for Dental treatment in May and June didn't work, and filing a wounded warrior SSD claim didn't work.  We've been in a backlog of claims since 2008 and I'm tired. I'm tired of fighting it and I can't get a break. 

We took one of the new Disability Benefits Questionnaires to John's Mental Health doctor two weeks ago to his 2 week check up.  My thoughts were that he'd seen her for about 2 years and she could accurately describe his need for total disability.  We go to the appointment to find John had been reassigned to a new doctor.  His doctor wasn't gone but as the VA hired many new MH employees, they redistributed the cases.  Oh my...."Here new Dr. W. Here is this detailed questionnaire for you to fill out" and my heart sunk again because I wanted it done by the doctor that knew John and knew of the severe issues that he was having and knew that they were real. 

Dr. W. did check the box that John has "total social and occupational impairment" and I was happy to see that he did a 97% accurate job, in my opinion.  But it is frightening.  I'm not supposed to be the paranoid one but the whole process is beyond frustrating.  Yes, I have faith....I've had faith....and I am sure I will continue to have faith.  But my faith in the VA system is wavering.  My faith in God to provide for our family is still there but we desperately need this increase in compensation from the VA for my husband's suffering and impairment from his disabilities.

So, if you are still reading....PRAY! Send up a prayer on our behalf that when we get there tomorrow we'd have favor and the records will be in order.  The symptoms and problems will be apparent and recognized and recorded appropriately and justice and mercy and goodness will prevail on behalf of this wounded veteran and his family.

Chocolate Mug Cake...Faith of a Child

Our two boys had spent the week mostly away visiting aunts and uncles and the grandparents on the farm.  Yesterday afternoon, we went to pick them up and there were thunderstorms with heavy rain passing through.  The drive is about 90 miles for us, so it isn't just a quick pick up and head home. 

On the way home, the rain picked up and visibility was slim.  My wipers were going full force and I had to slow down substantially.  From the back seat, I hear Gabriel (age 6) exclaim, "I'm talking to God.  I prayed: 'Dear God, please let this rain slack up a little bit.'" Then in a few moments the driving was much easier as the rain let up a little bit. Gabriel was astonished and immediately thanked God for listening to his prayer and quickly answering.  

Then Aston (age 4) with the mustard seed sized faith to move mountains says, "Dear God, I want a piece of chocolate cake."  He was so serious and genuine and then he paused. He just sat there.  He held our his little hands as if waiting for a plate of cake to miraculously appear as fast as the rain subdued. 

Aston wasn't as happy with his prayer result as Gabriel was. Gabriel saw instant results from his prayer and Aston expected no less.  So this morning, I decided to search for that Chocolate Mug Cake recipe.  I found it and made Aston his very own Chocolate Cake.  It is waiting for him when he wakes up.  I guess we'll have an object lesson breakfast of the fact that have to wait longer for answered prayers!

And Jesus said to them, Because of your unbelief: for truly I say to you, If you have faith as a grain of mustard seed, you shall say to this mountain, Remove hence to yonder place; and it shall remove; and nothing shall be impossible to you. -Matthew 17:20 American KJV

 

I'm acutally thinking that this mix would be very adorable as a teacher/friend gift packaged in a little mug.  I think I'm going to experiment to see what I can come up with.  I'm thinking substitute Whole Egg Powder for the eggs and Fortified Instant Milk for the milk.  I guess I might need some Butter Powder too. I've never had these staples in my pantry but I've looked at purchasing them in the past.  This way, all the recipient has to do is add water.  I think I may order those things as they would work great in the pantry stockpile and then I'll have them next time the need for a small gift arises.  Of course, Aston loves to cook and help in the kitchen and he will probably want to make a bunch of these to give away.  

Maybe we'll have to design our own special gift tag.  I'll work on that and post it to share when we finish it!

Hope you have a faithfilled-prayers answered kind of day.


 

We are the VA Backlog

I started using Twitter this past week and much to my suprise it is a great way to connect and find information based on subject matter and interests.  I admit that I sterotypically thought of it as friends and celebs tweeting their every move and trip to the toilet.  Alas, I am pleasantly surprised. 

One of the things I have been concerned with for quite some time is the VA Backlog or as I now know it #VABacklog.  It is appaling and horiffic to think that there is such a mound of claims that the VA can't process them fast enough.  I've seen the frustration from my own combat wounded spouse becuase of his inability to work, our financial strain, his deteriorating health, inability to be left alone independently, and the VA's unrelenting process of hurring up to wait a bit longer.

I first wrote about my thoughts on the VA backlog in relation to the rise in veteran suicides in January.  You can find my post here.  Today, I feel like we are one of that 600,000+ in the backlog.  Sure, everyone has their stories and it is horrible that vets get the back burner when it comes to much
deserved compensation. 

While we've waited the better parts of the last 6 years waiting on claims, I do not understand why we've had to wait 7 months on a few papers (sent in by our congressman on our behalf) to be mailed somewhere to an office to be scanned into the Veteran's Benefits Managment System (VBMS) so that the VA can say they have now have a "web-based, electronic claims processing solution complemented by improved business processes.  Once the claim is scanned we will proceed with the claim processing."  By the time they mailed the five or six pages, took seven months to get them scanned, send correspondence appologizing back to us and the congressman, I have a hard time understanding why they can't just look at the papers and see that we need action.  Seven months to put a hardship request and caregiver documentation into his file to be reviewed later. Pitiful.

For almost two years I have been paid from the VA as a full time, Tier 3, caregiver for my husband.  Back in early Fall of 2011 his neurologist filled out paperwork for Aid and Attendence noting that John needed "Constant Supervision."  In December of 2013, we finally got notice that they denied this claim becuase they felt John needed no assistance.  In my opinion, this claim was one of many we've had denied when I believe the VA just wants to move some numbers and reduce that backlog.  Documents upon documents show that John needs and deserves Aid and Attendence, yet the VA denied it without really looking at the evidence so they could reduce that backlog of claims.  John's claim was processed. "Denied." For me, it is unacceptable.  For John, he doesn't have the patience, memory, or stamina to fight this battle. 

I feel so bad for the vets who don't have someone to fight this battle for them.  I guess this week I will once again step up my efforts to reach out to other organizations that John is a member of and those groups that have told me they would try to help us.  It is tiring.  Even when the Congressman's office has petitioned the VA to expedite our claim due to hardship and "clear and unmistakable error for the rating of individual unemployability, aid and attendence, and traumatic brian injury."

Veterans are ending their lives daily with suicide and others are dying from their illneses and injuries.  Today, John's life didn't end but he suffered with living.  He cried becuase he couldn't move his legs or walk to the bathroom.  He couldn't put on his own socks or move his own covers.  Today was a day worse than some others.  He couldn't get to the bathroom without his wheelchair and assistance.  His chair doesn't even fit through our doorways but the VA denied that housing adaptation grant too becuase John has a brain injury and seizures.  Since he hasn't lost a limb or eyesight, they say we are out of luck and have to struggle.

The VA is not responding effectively and timely enough.  We, the backlog, are at war with a mound of paper and a system that is not effective enough. It has almost squashed us to death.  We've got to win this war.  My husband and the rest of the backloged vets deserve better.  Fight for them.

On the Iraq and Afghanistan Veteran's Facebook Page they posted this informaional photo to give you an suggestion of how to petition your congressman:

Low Carb Dill Pickle Dip

For those of you who are keeping your carb count minimal, you know that it seems variety in your diet can seem nonexistent.  Meats, cheeses, salads and veggies...Right?

Yesterday, I was perusing Pinterest and saw a lot of people pinning a Dill Pickle Dip but I didn't like the ingredient combinations of most of them.  No thanks to the jalapenos for this family.

So I decided to try to kick it up a notch with some parmesan with parsley and garlic salt (Og carbohydrates) that I got at Publix on BOGO a couple weeks ago.

This is great to dip veggies in.  Maybe you could even stuff the sweet mini peppers.  You could also use this as a spread for sandwiches or burgers.  Of course, you could always go for the typical crackers to accompany the dip. 

I mixed all of the following in my Kitchenaid Mixer until blended:

• 8 oz cream cheese
• 1/2 cup sour cream
• 1/4 cup parmesan cheese with parsley and garlic (you could always use plain parm plus some garlic salt with parsley) 
• 1/4 cup dill cubes/relish

That's it! Simple enough and now we've got some variety to the low carb diet this week.
Enjoy!

Our Resurection Rolls with "Jesus" Marshmallows

This morning, Aston and I baked our version of Resurrection Rolls.  

He woke up wanting to wear his "handsome clothes" because it was Easter time.  Being the strong-willed child that he is and having 3 days left until "Church day" to do laundry, I agreed.  He dressed and wanted to make cookies.  However, the Easter cookie dough that he thought was still in the fridge wasn't there.  So, he asked for marshmallows.  I thought, "Hey, little buddy, lets make some cookies with strawberry marshmallows!" I pulled up a few things on Pintrest but I didn't want to roll the marshmallows in all that melted butter! We did our own thing.

Preheat oven to 375 degrees.  Then lightly grease or spray a muffin pan.  

You will need:

• 1 can of Pillsbury Cresent rolls - 4 ct
• aprox 4 TBSP of brown sugar
• sprinkle of cinnamon (mix with the sugar above)
• 4 Strawberry Marshmallows (after all pink represents Jesus!)
•  enough water to coat marshmallows
• about 1/2 TBSP butter - quartered

First, dip the marshmallow in water and roll in the brown sugar to coat it.  Place the marshmallow on the crescent and roll it up, make sure to pinch the ends shut so that the sweet Jesus can't get out! 

You can explain to your child that the marshmallow represents Jesus and the crescent roll represents the tomb that Jesus was buried in.   

Next, roll the crescent package in a little of the brown sugar to coat it and place it in the muffin pan.  

 

Finally, we put a very small amount of butter on top.  Then we put them into the oven.

Cook for 11 minutes at 375 degrees.  

While they are cooking, you can explain to your child how after three days in the tomb or grave that Jesus rose from the dead.  Point out that the sweet Jesus rolls are rising as they cook!  

Take out your little mini tombs and peel them or cut them apart.   You will notice that they are empty.  Just as the marshmallow rose and caused an empty crescent, Jesus rose from the grave to ascend to heaven! What a story.  

Then if you look close, you may see some of the pink syrup at the bottom of the roll.  If you want to be really technical, explain that there was evidence left in the tomb that Jesus had been there.  You can explain to older children that the cloths that Jesus was wrapped in had been left in the tomb!

These are really good and sweet without all the extra butter and sugar that some recipes call for.  This is so easy for kids to help make and it provides an excellent teaching of what Easter is all about.  

Aston (age 4) went right to the living room to tell his dad, "Look Jesus exploded and left the grave empty." At least it is a start.  Even for a four year old, he will probably remember this for a while!

My desire to simplify: I'd give it all away

 

"I'd love to get rid of half the stuff that we have." 

Many of my friends and family have heard me say that numerous times over the last couple years.  It is so very true.  Firstly, we have too much stuff.  We have too many clothes, too many movies, too much paperwork, too many toys, etc.  Secondly, our children love to make messes much more than they like to help clean them up.  These messes turn into tripping hazards and obstacles that are simply sometimes unsafe to brave when John has a bad day, can't see very well, is dizzy and off balanced, and especially when he needs to use a walker or wheelchair.  Lastly, I'm simply tired of cleaning up.  My theory is that if we have less stuff to make messes with there will be less mess to clean up.  

Before Christmas 2012, we gave a lot away. We gave away bags and bags of toys and clothes.  I felt great about getting rid of so much and also seeing it go to others that could use it.  Yet, it just didn't even seem to put a dent in our stuff.  Then, we had a yard sale in January.  I will likely never have a yard sale in January again.  You can not even give things away because most everyone that usually would be buying up your cheap bargains (I'm talking about .50 GAP toddler jeans and .25 pajamas) just had a successful Christmas and didn't yet need anything else.  So, we heard of a family that adopted two or three boys just younger than ours and we packed up some more stuff and sent their way.  

We still have so far to go.  Why is it that we even accumulate so much stuff in the first place? We want? We need? We get sucked into the latest marketing ploy? We want our kids to have more and better than we had? We get trapped into collecting things we don't need? We hang onto things that are unnecessary?  Now, don't get me wrong because we are certainly not hoarders or pack rats by any means.  We just have so much stuff that we simply don't need.  We've had things left over from business and personal projects and it resides in the garage and the shed.  We still have a few clothes we've hung onto that we will likely never wear again.  We have to get rid of it.  Less seems like more these days, yet ten years ago I wouldn't have been in that mindset.  

We're stepping out.  We don't know where we are going or what all it will involve but we're finally at peace.  We're letting go.  Breathe.  Simplify. 

I guess we have got to the point in life where we have had some measure of success and we've had some failures.  I'm certain that there will be more of each of those to come.  However, money in the bank, a successful or unsuccessful business, and worldly belongings will never be able to take the place of cherished quality of life with those you love and happiness.  Sure, money can buy entertainment and adventure.  Even for us, in order to keep our sanity we have to get out frequently.  Yes, that costs money too.  However, if I have the ones that I love around me and minimal amount of comforts I seem to feel more carefree.  

We have a house that is beautiful, yet it is not ideal for us because of John's disabilities.  Almost 100% of the time he can't cut the grass or keep up the yards barbecue of his severe headaches, seizures, etc.  I can't help maneuver him to via the wheelchair through the house because his wheelchair won't fit through the halls, closets, or doorways.  I'm tired of struggling with this.  

Just very recently did we become accepting of the idea that we need to get out of our house.  We need to find a more suitable home.  We need to simplify because I don't want to move all the things we have.  We just don't need them.  We need each other.  We need love.  We need forgiveness.  We need grace.  We're stepping out.  We don't know where we are going or what all it will involve but we're finally at peace.  We're letting go.  Breathe.  Simplify.

 

Toby Mac's "I was made to love you"