What is Hope?

        I've sat here all day asking my self what exactly hope means...by definition hope

1. intransitive verb

2. 1:  to cherish a desire with anticipation <hopes for a promotion>
3. 2archaic  :  trust

4. transitive verb

5. 1:  to desire with expectation of obtainment
6. 2:  to expect with confidence :  trust

hop·er  noun

hope against hope

1. :  to hope without any basis for expecting fulfillment
   
   I can admit I have felt hopeless several times this year, between the huge cut in our income to fighting the VA for the husband to get his pay fixed all the way to worrying about my mom's health the past few weeks. It's been a rough year for our family and yet we've made it through because we have hope that we will get thru it with each other. 
   A week ago I received an amazing phone call from Hope for the Warriors...through the help of some amazing donors I will be getting a workshop built so I can move all my wreath making stuff and crafty supplies out of our home. Making wreaths help supplement a small portion of our household income so to have a space designated for this is huge! I can admit I cried when I was told that this was happening! I also did a lot of over thinking and felt guilty because I didn't think I deserved such an amazing gift. As most of us in the Wounded Warrior community we also know of a family in a much worse situation and we want to help them. That's why I love this community and all the wonderful people who help us. 
   Over the next few weeks and months I will be updating everyone with pictures and blogs each step we take thru this amazing journey. I am extremely Hope-ful that 2016 will be an amazing year full of hope and joy! 
   
   
   
   
   
   
   

Creating

A few years ago, before the husband's first hospitalization I worked a normal job...it was a great job being a special education para, I loved the school I was at, the teachers and staff. I was my own person. And than the husband was hospitalized shortly after coming home from his 3rd and last deployment, the PTSD monster had taken over and she was controlling him. I quit my job and started down the road of being a fulltime caregiver. That was a huge cut in our budget but we managed because he was active duty.

Fast forward to 2015 and he's no longer active duty...we live on VA disability at 80% and SSDI which in the grand scheme of living isn't a lot plus we have a 16yr old son who is active in boy scouts and a daughter that goes to college. I tried looking for a fulltime job but when managers hear that I need flexible schedules or that there might be bad days for my husband and I'm unable to be extremely reliable there goes that job.

I've always been a "crafty" person, I can look at a picture and make most things so I would make homemade presents for family members to save money. That's when Dreamin in Burlap came to be...thanks to the encouragement of several amazing women who are in the caregiver community.

 Being able to start a company is amazing for us, my husband helps me by tracking my orders, keeping me on budget and checking my inventory. My daughter when she's home is my go to rag wreath maker and my son helps by making boxes and loading up the vehicle for our weekly shipping day. Not only does this involve our entire family but it helps give my husband the stability he needs with me being home and it helps bring some income to the household so we can afford boy scouts, art supplies or even groceries.

We donate multiple wreaths to caregivers, veterans and other amazing people that just need a pick me up. We want to help others feel better about the new normal of being a caregiver, a disabled veteran or an advocate for the veteran community. We also have donated items to our local YMCA for help with the scholarship program to help underprivileged families have the chance to use the YMCA and the programs that are offered. This is all done out of pocket and it gives us a great feeling to know that make that little wreath makes someone smile when they're having a rough day.

 

  

Finding help in a broken system

As many of you know I have kids, who I love more than life itself even when they drive me insane. This blog is about one of my kids...my 15yr old. Now my son is a wonderfully, amazing, loving child who would give the shirt off his back to help everyone. He hates seeing people upset or mad especially at him. My son has Aspergers along with severe depression, adhd and a few other things. He has struggled with these problems for many years and it sucks trying to get him help with a medical system that seems broken with every turn we go. 

We have Tricare(which we pay a premium for) thanks to my husband's military service but Tricare isn't accepted at a lot of doctors office due to their practices of not paying the doctors a fair amount for their services.  Hence where the problems show up, because doctors can refuse certain insurance companies a lot of doctors that my son needs won't even see him and the ones that do take Tricare are booked as far out as 4 mos. So do we struggle and wait 4 mos or do we pay a ridiculous amount of money to have my son treated...for us it's a struggle to come up with anywhere from $100-225 a month to cover medical treatment that is desperately needed for him to have a normal life.  As parents we will figure it out and go with out a lot of the times for our children's well being. 

But let me start at the beginning of our  journey to find help..we started taking my son to a wonderful therapist about a year ago to help him with his problems. We had discussed several times about putting him on meds but I was very worried about him being over medicated after seeing that happen several times. But as we noticed my son didn't get better in fact he continued to slide deeper into depression until his sister noticed that he was cutting himself. After that discovery we decided that for his safety and mental well being we needed to get him in to see someone for medication. We went the correct route with Tricare, referral from our PCM and once we got the approval I called the doctor we were referred to. I called the 1st day, left a message..called the 2nd day, left a message..called the 3rd day. left 2 messages and called the 4th day and left about 5 messages requesting to schedule an appt. to this day that doctors office NEVER called me back. So I called Tricare to get a list of doctors to see if I could schedule something immediately. I called every doctor on that list of about 4 and out of the 4 I left messages for only ONE called me back. So we waited the month to get in and went in to see this doctor's nurse for the initial intake which didn't go to well since my son admitted that he had been feeling suicidal for many years, which had taken us all back because he never told anyone. We left knowing that we needed to discuss this with his therapist which we did and we waited  for the following week to see the actual doctor. Well the day of that appt came and it was a wreck. The doctor REFUSED, yes refused to see my son because "he wasn't stable". So my son felt like he had been abandoned by this man who is supposed to be there to help him. I called our therapist who recommended that I call Coastal Harbor Hospital and take him there. Which I did, after the initial intake from them it was decided that my son be hospitalized for his safety. Let me tell you having to leave my son there was the worst feeling I think I've felt in a very long time. But I knew he needed the help to get better. So my son spent 7 days there working on a good plan to help him heal and start working on himself. Upon his release he had an appt with the doctor that refused to see treat him for medication monitoring....well the following week we went back up there and yet again the doctor REFUSED to see him, he sent his nurse out to talk to us because he couldn't even be bothered to come out and talk with us. So 2 times this man who is supposed to be a professional screwed my kid over. So back to the phones I went, begging and pleading with the doctors on the Tricare list to squeeze my son in for his meds...instead I was being told 3 to 4 mos wait for him to be seen. Did they not understand that my child was in need???? 

I finally broke down after a month trying to find a doctor, any doctor that could get him in and we are now paying out of pocket for my son's medical needs. I sit here knowing that we aren't alone in this process...we have a serious breakdown in the mental health care system and no one seems to care until someone who needed that care harms a group of people. Than it makes the news for a minute and than it's right back to the latest celebrity gossip or some other random thing. When do we have a voice to say enough! We have children in desperate need committing suicide, hurting themselves and others screaming out for help...we have adults who need help and can't afford it and we have families that have to choose either bills or mental health care. What good is having this affordable health care act or insurance when doctors can pick and choose what insurance they'll take?  How do we as parents find help for a our child in a system that is broken and seems to be out for themselves instead of helping their fellow man?

I challenge my state reps in Georgia to step up and help change this practice...I challenge Jack Kingston, John Barrows, Jack Hill and others to help change this. I also challenge Gov Nathan Deal to step up and not allow this to continue in our state...will they hear this? Most likely not but I have to hope I'm not the only voice!

NYC Writers Retreat

I have to say this...I would be the only person in a retreat of 20 women to have some creature climb up from the bowels of hell and latch itself into my stomach. That creature has stopped me from making my pilgrimage to see the fabulous Al Roker, that is super sad for me! One day I will see and take a selfie with Al..one day!

Ok now on to the reason for my trip..I was very fortunate to be selected(is selected the correct word?) to attend this amazing Writers retreat through the Wounded Warrior Project and The Writers Guild of America East. I had stopped writing for almost a year due to my own inability to pull the words out of my brain and put them on paper..err...iPad screen. Maybe it was my insecurity or just me making excuses for my laziness but I received such amazing mentorship and encouragement from several wonderfully inspiring women who have written screen plays, tv shows, award shows and comedy skits how could I not be inspired to write. 

This 2 part trip has shown me that I have a story and I may not want people to see the true me it's a story that might just need to be told. I have a twisted sense of humor but that's how I adapt to my home life. Life or fate has a way of reaching back and bitch slapping you into reality and facing things that sometimes are uncomfortable or even funny. 

I have made life long friends with women who could take on the world, well the VA and the military which if you've ever had the "pleasure" of dealing with them it is the world. One of those women is a published author who has no problem introducing herself to a random stranger on the streets of New York and making friends or even trying to get Denzel Washington to come up our hotel to meet us...which didn't happen but at least she tried! I watched women open up to some very dark and hurtful things and pushed thru with a resiliency (yes there's that word again) that makes them look like super heroes with their invisible capes flapping in the wind. I am in complete awe of these women.

This trip hasn't been all about writing and tears. We were able to explore this jungle of buildings, lights and people. We learned how to get from NYC to Hoboken NJ,on a trek to see THE Cake boss and get some wonderful goodies, sadly Buddy didn't get the memo we were coming so he was on his way to Vegas but his employees were fantastic. We ran in a rain shower 10 city blocks and dodged a see of umbrellas and people. We found the typical New York gift shops filled with random Statue of Liberty figures to the NYC mugs..I think the city has sold herself short on the mug market.

This trip has touched me in ways that I didn't think were possible..I will always look back at this as that pinnacle turning point in my person to try and continue to push. This is MY life..my random thoughts and if you don't like it don't read it.

I forget....

Some days I forget that I have a good life...

the days when everything feels like it's going to crush me and I can't breathe are the days I need to remind myself that life is good...the past week has been extremely rough on not only me but the husband...we hit a huge milestone for him in the fact that he celebrated the 10yr anniversary of the invasion and that stirred a lot of memories that I don't think even now he's ready to face.

Unfortunately it also stirred a lot of memories in me of almost 10yrs of putting up with PTSD and a TBI...the effects that have had on my husband and our marriage..and I felt myself becoming angry all the time..living this life is nothing I would wish on anyone...let me state ANYONE! We have had to struggle to find ourselves in the turmoil of PTSD...we've lost our marriage a few times, we lost sight of each other and there have been a few moments when walking away seemed so much easier than fighting anymore.

This past week made me step back and look at how much hurt and pride I've had to swallow because I knew that what my husband was saying and doing wasn't totally him...in 9yrs of marriage you can say some pretty harsh things and do some pretty stupid things..but in 9yrs one person does become beat down, angry and extremely hurt. I love my husband...I love the man he was when we first met and the man he is now, sometimes I don't like that man but I do love him.

We aren't a statistic...we are a couple who found each other in the midst of craziness...we fight, we love, we get hurt and we hurt back...but in the end of the day when the house is quiet and I hear him breathing while he sleeps I know that my life is good because at the end of the day I still have him.

I am Lost...can you find me?

Change is necessary....

Change is scary...

Change is aggravating as hell!

Lets face it we all go through changes daily...some good and some bad but our lives are constantly changing.  In my life I have to continue to change, adapt and overcome the huge obstacles in my life simply to find "me" in this mess. Somewhere in this life I've lost myself completely and wholly. And that is a scary realization. How do you just lose yourself?

I sit here and I look at my life and the day to day struggles and wonder what exactly is my purpose in this life...am I a mom? A wife? A caregiver? Exactly who or what am I? I can't even answer this question anymore...I've let the last few years completely beat me up and take away what little identity I had left.

I answer emails, phone calls, text messages from others in the same spot as me and I can help them, I can give them the answers they so desperately need to hear but I can't seem to follow my own advice. Maybe because it's easier to help people than help myself. I can be everyone's cheerleader but not my own. And I can't reach out to others because I know how bad their lives are...

I went on a retreat 2 weekends ago and the location was beautiful, the farm was beautiful and the weekend should of been beautiful but all it did for me was to make me feel just isolated I am...how I can't stand to be near people who through no fault of their own just make me want to climb a wall...I have no tolerance anymore...I have no life. The isolation of my life just continues to scream at me...the voice is so loud that it shouldn't be easy to ignore and yet I continue to ignore it. Maybe there is something wrong with me...I don't know anymore. I can put on a happy face, act like everything is ok but something in me is dying a slow strangling death. I can feel it..and I can't stop it.

I keep hoping that staying positive on the outside will help me feel it on the inside and it doesn't...

It's been awhile...

I haven't been writing in a very long time..I needed to step back and focus on the craziness known as my life. Each day it's a struggle to find some sliver of normalcy in our life, but I do find it.

In the past year we have had some amazing highs and some devastating lows..I've lost more friends and gained 1 friend in their place. We have settled nicely into our little house and for the most part we enjoy the little niche of our life.

Our son is now in West Virginia working as a coal miner and seems to be finding his path in this world..and hopefully each day he finds the right footing to continue on that path. I miss him daily but I know in my heart he will be a better adult for this...

Our daughter is getting ready to graduate in a few short months and head off to SCAD(Savannah College of Art and Design) as a freshman. I'm not sure how I feel about this huge change in her life..and mine! I've gotten so use to having her as my friend/WalMart buddy that when she moves into the dorm I'll have no one to go with me. I will have to call and make plans to see her. The one thing I'm thankful for is that she will only be 25 mins away from home.

The husband is about the same..he struggles with sleep, with crowds, with driving and the normal things we all take for granted. Somedays I see a small part of the guy I knew 9yrs ago, before he started to go down hill. I miss that guy! I am now his fulltime VA caregiver which is a hard balance to figure out between wife/caregiver and a lot of the time the line is blurred. But I have faith that we will find his place in this normal life.

Hopefully each day life gets better...