Dear VA: I Messed Up. V/R, the Forgotten

My husband is veteran, proudly serving his time in the U.S. Navy as a Seabee. His years included peace time and war time, with him on the Kuwait and Iraq border as Operation Iraq Freedom officially began in 2003. He was tasked with maintaining electrical services to the base camp, and his battalion was instrumental to multiple branches during that time. He didn’t relish in or crave war, but did what was needed.

Before that, he spent another deployment building a college on a Navy base, and spent homeport times training (and golfing and fishing). He was good at what he did as an electrician, and truly contributed during peacetime and wartime.

But we’ve messed up. I made a mistake.

Are you ready for the horribleness to come?

I dared to have our family try to be normal. To try to have vacations, to have outings, and even to have birthday dinners. I don’t do it often, I don’t let myself forget that we aren’t able to do so many of these normal things. But sometimes I do.

Had a ‘stand in’ husband since mine had to leave because he got sick.

On this recent Veteran’s Day weekend, I was again reminded that we are missing much of what others take for granted because of an illness that we have managed and suffered through for 18 years. It has stolen so much from us, and made it difficult to have hope that things could ever be different. His illness started shortly after boot camp, and to this day no one knows the cause. Something triggered that first episode of nausea and vomiting that couldn’t be controlled. Something kept triggering it through 18 months at a Navy hospital that didn’t even try to find answers, but would send him home still vomiting with a shrug of their shoulders. A move to a new command and episode on day one in a new town meant a new hospital, and our first glimmer of hope from a doctor who researched through the night to find what may explain his thick chart. Tests were ordered, deployment was pronounced impossible, and it seemed that we might find help. But, as we later learned to expect, that communication fell through and off he went. A new hospital, four major episodes and admissions and the only person who knew what was going on with his health and care thousands of miles away. But then, home he came. Back to the hospital trying to find answers, and trying to find successful treatments. But again, it was an Air Force facility, who again determined him not deployable, but again had the communication to his command fall through. So more tests and hospitalizations continued until it was time to deploy again. This time to the very edge of war, weeks before it was declared. And off he went with his battalion. The field hospital could only keep him hydrated and monitor him. And give a sigh of relief when his deployment was shortened due to his enlistment being up.

We believed that he’d be taken care of after, and blindly hoped that the end of his time in the Navy would improve his health. It didn’t. And 14 1/2 years later, here we are.

A mess.

Trying too many times to make birthdays, events, holidays or even trips happen. Trying to make jobs happen. But so many things trigger his extreme nausea and vomiting, that it’s almost impossible to really plan on him being anywhere. Most routine things go okay, but anything out of the normal schedule is a trigger. Especially good things. And we’d need a whole day to talk through the mental health affects and life impacts of those. Too much to tell.

So yes, Department of Veteran’s Affairs, I messed up and believed he’d get the care he needed, and believed time and time again that we could make something good work out. But it’s just not working. We believed that you’d see the reality of his need for 100% disability and truth of being unemployable. That hasn’t happened either. Yet. But we won’t give up hope. I’ve made a lot of errors through the years, but that won’t be one of them.

Last week, he had a last minute appointment scheduled with one of your doctors, who has previously told him that he should be rated 100%. We don’t know what next steps are or where the process is, or what we’re waiting for, because he got too sick during the appointment to even ask. He spent the next 12 hours in a hotel room to use the hot shower to get it under control so that he could drive home. That’s just not how it should be.

So yes, we’ve messed up and forgotten the limitations and realities and finally get it. This is where we are, 18 years later, still needing the military to take care of him in all the ways we can’t do alone. And like 18 years ago when I was asked by a nurse to help him get dressed to leave the ER because he was too sick and out of it to do it himself between vomiting, I’m still here.

 

Still waiting.

V/R,

The forgotten.

Long Lost Me (Updates, Announcements & Ponderings)

It’s been 11 months since I’ve shared here. No one but my encouraging/pushing/believing mom has asked me about it, and I almost didn’t renew my site when the emails came recently about the automatic renewal that would happen soon if I didn’t cancel. I decided to do the same thing I’ve done with the blog for the last year- nothing.

But I have been writing. Not as often as I’d like to say, or as much as I’d like to claim, but I have been slowly and steadily writing. For years I’ve wanted to put my perspective on our story into a book. I’ve pondered the format and style and how much to share and how to share it…. I’ve pondered if it matters. I’ve pondered the why. But I’ve settled on most of that, and look forward to finally publishing it. I’ll share more as it gets closer, but one thing I know I’ll need is your help. All the “cool” people writing books now are forming launch teams, and I should probably do the same. When it gets close I’ll ask any of you who are interested to join a Facebook group so you can give me some feedback, keep posted on launch dates, and help spread the word. In the end, it may just be my pushy 🙂 mom and I reading it, but on the other hand, maybe God can use this bravery.

So, that’s the big announcement!

The rest of our story continues on much like it did 11 months ago. No updates in the search for Austin, the continued ups and downs of battling Cyclic Vomiting Syndrome, still being the main caretakers of a now 17 month old who stole our hearts, and living life the best we can through it all. God may choose to wrap up some of these loose ends, but I’m not counting on it, just still counting on Him to be with us through it all.

This morning, I read a verse that I wanted to share because of how profound an impact it had on me. I constantly question what I’m supposed to be doing, how I should handle situations, and if I’m on my own path or one God has laid out. When I don’t know those answers, I can turn back to this directive every time. It simplifies it. And when I’m doing this, it sets me on the right path.

Philippians 4:8   Finally, brethren, whatever things are true, whatever things are noble, whatever things are just, whatever things are pure, whatever things are lovely, whatever things are of good report, if there is any virtue and if there is anything praiseworthy—meditate on these things.

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Glitter & Good News

It’s the second most magical time of the year! You know, the time when we all have a fresh start. We have clean homes, new calendars, goals and themes for the New Year. We’re getting healthy, keeping our closets organized, and planning our meals.

Except . . . I’m sitting here at the end of the first full week of the year, and there’s glitter on my cheek. Why? Because last night I finally started putting up the Christmas decor, and still today have piles of lights and ornaments and pine needles in my living room floor. And I overslept and skipped the shower, so I keep finding specks of glitter in random places.

Read the rest of this post over at the Orange Leaders Blog!……

I’m SO honored to be guest posting over at Orange, and passionate about what they do. If you’re visiting me for the first time from there, Welcome! Check out some posts and learn some about my wild life, and I’d love to meet you too.

Needed Some Happy…

I needed some happy and some beauty today as I pull myself out of a funk. So, I thought I’d share it with you, because maybe you too need the reminder that the world is a place full of wonder and beauty.

 

sunrisesunsetSunrise over Fort Lauderdale, Florida

 

537446_10151298533738762_1868271586_nSunset over our house

Abaco Islands, Bahamas

A special beach- Abaco Islands, Bahamas

 

trees_sunSun shining over a search

 

Praying over you my friends. For eyes that are open to beauty and wonder, and for reminder of it when you need them.

 

A Moment to Remember

We all need more moments like these. Or at least I know I do.

Complete abandon, going down screaming with joy, one hand raised in the air in triumph, with no concern about what’s at the bottom.

Have one of those moments today.

Let’s do it.

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