Day 428 - Jul 31, 2009

I think the really sad part about all of this spiraling out of control is that all I asked was that everybody write to their senators and congressmen. I rarely mention the bad things that go on throughout most of the day, but I did decide to share what really goes on in a wounded soldier's caretaker's financial life just so that you could all see how important it is to support this bill. That was it. That's all I asked.

How it all turned into an attack of sorts on my purchasing a Wii and a laptop to help Kevin regain some of the mental shortcomings is beyond me.

How it ended up being that we have eaten out too much over the last 14 months I don't know either. Personally I would die a heavenly death if I could have a home cooked meal forever more. Does anyone have any idea how hard it is to eat out 3 meals a day for almost a year because you don't either have access to a kitchen in your living quarters or because you don't leave your son's hospital bed to cook?

As for the pool - no regrets. I do admit that if I had known that Kevin wasn't going to be discharged for a year - I would have waited. But I had been told over and over again that he would be. That the process had already been started. As to why I purchased the pool - two reasons. Number one - therapy. No more explanation needed on that point. Number two - Kevin is almost always in his room. I want him to come out and do things he used to enjoy doing. Swimming was one of those things (and let's face it - he's never going to drive again, never skateboard, never play XBox, never ride his BMX bike and never jump out of an airplane either). Now we could have went to a public pool but I have this aversion to making my son become the entertainment for the day. When we took him into the pool all those months ago it took him close to 20 minutes to get into the pool (and get out) and it's not like he's going to just start swimming right off the bat either. And we won't even mention how bad his body is burned. So should I seriously just put him through that? NO.

The point really has been that all of these things may not be necessities to a normal person, but we don't live a normal lifestyle. Kevin requires the pricier patio table and lounge chair because he (and the piece of furniture) both fall over when he tries to get up if it is too lightweight.

I also think that some of you believe that we eat at expensive restaurants all the time and that is so not true. It's a rare treat and I usually mention it on here because it is a treat. I also should point out that I don't usually eat when we hit a drive-thru (Kevin is ALWAYS hungry) - he purchases his meal and I wait until we get home and have a fried egg or peanut butter toast or something simple like that for dinner.

So what I would like to do is end this drama right now. I honestly don't have the time to dwell on it as my day is full enough already. I don't discount anything anybody has said - we all have our own opinions, but all the negativity must stop. I just don't live my life that way. I just can't live my life that way.

I will say that I am very sorry if I offended anyone with my spending, but I don't really regret anything. I have done everything for Kevin to help him have a better quality of life. If it wasn't done on your timetable - I'm sorry, but I do feel that each thing that I purchased has helped him get better than they ever said he would.

So once again - let's move on completely from money issues and focus on the real thing - KEVIN!

Kev said a new word today - RED. Strange, I know, but he has flashcards from the new therapist and he did very well with his colors. He has to learn them all over again, but we are getting there.

I can't stress enough how pleased I am with this new therapy group. They so rock! Kevin is just responding to everyone and doing so much more than he ever would. He even walks in and shouts and waves hello to the receptionist and just 'talks' up a storm with everyone. He loves it there.

Today we didn't do too much. We did go to visit my sister Kim, who just moved here yesterday. YAY! And other than that, Kev just 'hung out' with Tracy's son Jessi and his friend Mikey. They are getting along really well. I made a very small dent in the pile of mail and we got things organized because...and get this...our things from PA are finally going to arrive on Monday. YAY!!!! I can't even remember what we have. But I can't wait to see my sewing machine and my Kitchen Aid mixer. Oh and my food chopper. And my clothes. And Kevin's things from Afghanistan (although all of his movies and games were stolen). It's been 14 months today since Kevin was wounded and pretty much that long since any of us have seen our things. I just can't wait to have our home back - even if it is in Florida.

Day 427 - Jul 30, 2009

I think I should have started last night's post with a comment about my tone of voice not being one of anger or snarkiness, but rather just defeat and sadness.

I also should have made it aware that it was in private emails that some (yes more than one) questioned my financial integrity and it was only to them that I based part of the post to. The comments were what I was answering when mentioning about why I can't get a job.

I do know that most everyone that reads this blog understands what I am really like and I do think that most have our best interests at heart. I also think that I have made a mistake maybe in not telling y'all how crappy this lifestyle really is. I just can't focus on how bad it is though - it's the only way to get through all the horrible parts; by pretending that all is well and good.

So anyway, just forget I said anything. I just don't have time to focus on people that I just can't relate to. And to those that feel I am just out blowing money left and right on a high end lifestyle - well...the little smiley with the tongue sticking out is virtually inserted here. I also seriously hope that those folks never go through anything like this as a severe reality check will be blowing up in their faces.

Now...moving on...

We had 'the good aide' today. Her name is Trisha and Kevin did really well with her again. (Patricia - she can only come on Tues and Thurs so yesterday's aide was a once in a lifetime person).

He also had OT and PT today and did great for both of them. For PT he actually rode the stationary bike for a full 5 minutes. This is in the hopes that he will eventually be ready to go for a bike ride with me. Here is a photo:



And this one if of Kevin using the pulleys. He still doesn't really feel that right arm (proven when they took donor skin from that arm for the last surgery and he didn't even know it until I pointed it out - days later. And supposedly donor sites are more painful that burn sites)



And now I am going to sign off. Tracy and her husband Jody came down from PA to help me do a few things. Stuff like unpack and get the van fixed, get the car fixed, build things, fix things - basically all of the things that I just don't have time to do. Tracy has even opened all of the mail (the stack is about 3 feet high) so that I can eliminate a step in trying to get it cleaned up. Man though - she is a task driver, lol! I don't know who is worse - her or Kevin, hehe.

Oh and remind me to mention the new brain doctor tomorrow. I am really excited about him!

Day 426 - Jul 29, 2009

Thank you to everyone for your support of the Senate bill. I can't stress enough how important it is to someone like me.

I am going to focus this post on some of the comments/emails that I have received. First, to those people that think I have a lot of nerve posting about money while living in a new home and ordering patio furniture and a pool - I would trade you in a heartbeat for a healthy son and a normal 9-5 workday.

I think some of you are missing the point that all of those things are Kevin's. PAID FOR BY KEVIN. I, personally, don't own a bit of it. My name is not on the house (as it shouldn't be) and I am unable to contribute, which is very difficult for me. I lost everything. I did take part of the donation money and purchased the van for Kevin as quite a few of the donations were for him and it was something he needed. I don't regret that - and I never will.

As to my getting a part-time job - I can't wait for the day that that is possible. I actually loved working. I liked the interaction with my coworkers and I enjoyed using my mind in a beneficial way.

There are a few reasons why I can't go back to work though and the first is that we have way too much traveling to do yet. We are going to San Antonio, TX again for surgery in Sept for a couple of weeks (at least) and then to Houston, TX in the early part of next year for 8 weeks for a TBI study. We are also contemplating an aphasia clinic sometime in the spring too.

I can't see anyone willing to hire me when I am already going to ask for 4 months off over the next 8 - 10 months.

As for me working at home - Kevin would never be cooperative about that. I really try not to focus on all of the negatives of the day, but believe me - taking care of Kevin is no picnic. Matter of fact - it's downright hell 9/10 of the day. He is extremely demanding - to the point where I don't sit down for even a full hour throughout my 18-22 hour day. Not even for dinner. If I do actually get to the couch, it is less than 2 minutes before I am being 'paged' and have to run to do something else. I am really hoping the nurse's aide can make a difference, but today's didn't. He wouldn't allow her near him so I ran all day, while she sat on the couch and watched tv.

Another thing about my time (and Patricia hit the nail on the head with this one), while the caregiver is here - I really do try to get other things done. I have 3 months of unopened mail sitting here because Kevin won't give me time to take care of it. I have to pay bills, clean house and I also try to get all of Kevin's meals taken care of and I make tons of phone calls every day to all of the people that we need to deal with (ie case managers, FRCs, liaisons, sgt this, sgt that, and the list goes on).

And the main reason that the caretaker comes in is actually to give me a rest. I have never once 'rested' and I can't see it ever happening. I currently sleep between 2 and 5 hours a night - I would just love the chance to take a nap, but I just can't do it. There is too much to do.

Here's one thing - therapy. Kevin has two appointments a day for therapy. One in the morning and one in the afternoon - 5 days a week. If I were even remotely able to get a job - who would take him to therapy? He has to be coached to actually participate and I am the only one that knows which buttons to push when - like any other mother.

There is also a little situation called "Extreme Separation Anxiety". Folks - I don't even go to the bathroom without Kevin calling me on the phone because he can't see me. I just picked up the phone and checked and today alone - Kevin called me 17 times and I was here with him almost all day. I only left long enough to grab a few groceries - about 20 minutes. My father stayed with him so that I could run and it was so wonderful to go somewhere alone - something I rarely do.

What some of you may not realize is that Kevin is actually a lot like an active toddler a lot of the time. While I took a shower a few weeks ago, he went upstairs. He must be watched AT ALL TIMES! I cannot take my eyes off of him even for a minute.

I think, because I don't focus on all of the negatives very often, some people are assuming that I am living some kind of wonderful life and I hate to burst the bubble - but my life sucks.

But you know what? I wouldn't trade it for anything in the world because if I did, my son would be gone.

Day 425 - Jul 28, 2009

We had a really good day today. We got a new nursing assistant and both Kevin and I just love her. I think it really made a difference that she is only 25 and could better relate to Kevin than the older set that they have been sending. Those ones always sat and talked to me instead of concentrating on Kevin. It was starting to stress me out because I wasn't able to get anything done because I was constantly having to 'entertain' the nurse. I didn't think that was the purpose so I am glad I called while in PA and had them send us someone different.

Anyway, it was so nice because Kevin even went with her to Subway and he NEVER leaves me. And when he came back he was so excited because she listens to screamo too. I called the healthcare firm and told them to never take her away, lol. Unfortunately she can only come Tues and Thurs though (at least for now).

So to begin telling you guys some of the things that are really bothering me, I first need to ask again for y'all to write your senators and congressmen about the caregivers bill (July 16 post). It is so important because that is one of the major reasons that I am not sleeping. Money. (Doesn't it always come down to this in the end?) I also want to stress that this post is not me asking anyone for money - it is just an explanation into the true financial situation of a wounded soldier's caregiver so that more and more people will help get this bill passed.

Anyway, y'all know that I lost my job. What many of you don't realize is that although I have no income because I have to take care of Kevin - Kevin is not allowed to spend one cent on my needs. It is 100% against the law. I can be audited at any time as to how his money has been spent and I also need to file a financial report with the court system on a yearly basis.

I want to quickly jump in here and say that I'm not talking like I would ever just go out and blow his money - that's not the type of person I am.

But...

This means that if I need food - that's too bad. If I need clothing - that's also too bad. The same with a haircut, my phone bill, my shampoo and conditioner, gas for the car and every other thing you can think of.

I do have some money still left over from all of the donations during the last year - everybody has been so wonderful in supporting us - but the money is almost all gone. I have been laying awake at night trying to decide on whether to do a voluntary repossession of my car. It's a very hard decision to make because it's how we get around. The van is broken down (has been for months) and I can't get the company we purchased it from to come and get it to have it fixed so we truly use my car for everything. But Kevin can't make the payments (and let's not forget the insurance too) and I can't afford to pay it off. I could make the payments for a little while, but that gives me even less time to be able to buy food. It's just such a damn hard choice to make.

And frankly - I resent that I even have to make the choice. I swing between desolation that my credit and livelihood have been destroyed and anger at the Army for not caring enough about their wounded to take care of those that are taking care of their own.

I will say that I had told Kevin that he was just going to have to buy a car and that would have eliminated the problem of us having a way to get around if I did give my car back to the bank, but I learned while we were in PA that the Pentagon can't figure out how to do the expedited discharge so it will be 8-12 months before he is truly discharged (and that's if it really gets started - something that was supposed to have been done many months ago).

I have to be honest here - I had been assured that Kev would have been discharged around the time he purchased the house. Kevin's active-duty pay will not cover the cost of a home in Florida so I had left money in the bank to cover his bills for quite a few months - but definitely not enough to carry this house for a year. Which means that if things don't change - we will be homeless and frankly - that just makes me sick to my stomach - literally.

Now I will say that Breezy is looking for a job. She hasn't had any luck in this economy, but she is looking. Once she gets one, she is already aware that she will have to support me - but geez! Why is it her responsibility to do so? And is she supposed to do this forever? When she has her own family to support is she still going to have to give me money on a monthly basis?

This whole subject just isn't right!

But what are our options? Seriously? We, as caregivers of our own wounded soldiers, can either lose everything to take care of our loved ones or we can put our loved ones into a facility - allowing us to maintain some semblance of a normal financial lifestyle. What a choice, huh?

I guess the Army knows that most of us are going to lose everything to take care of our sons/daughters. Matter of fact - I would lay odds that they bank on it. Saves them a ton of money, doesn't it? I think I read it costs $27,000 a month to put someone like Kevin into a facility. Wouldn't the military/VA system be crippled if we all put our loved ones into a home just so we could buy a hamburger for dinner?

Oh well, I guess it's not going to happen. I am not putting Kevin into a home so I just need to figure out how to subsist on basically nothing. I am so thankful that I didn't have any credit card debt so I only need to worry about essentials and the car payment and insurance (if I do decide to keep it).

So anyway - please! Please! I beg all of you to help us get the word out about this bill. It's Senate Bill S801.

And because I really do try to end the blog on a positive note - go back up and read paragraph one. Otherwise y'all are going to be as depressed and scared as I am...

PS - here is a link to an editorial that the Pittsburgh Post Gazette did on this very subject:

Editorial

Day 424 - Jul 27, 2009

Yay! We made it home safe and sound. Kevin did remarkably well (once again) on the flight and throughout the airport. I am just so glad that you guys mentioned the Injured Soldier Program with the TSA. What a difference that makes!

And I most excited about the fact that we actually get to stay here for a whole 6 weeks or so! That will be the longest we have stayed in one place in many months. We need this, I think. We need to just unwind and get things really unpacked and put away. We just need to get into a routine and live a little - without counting down the days until we leave to go wherever.

And I do want to say I'm sorry that I haven't been writing much while we were home in PA. I will tell you that I have barely slept at all during the last week or so. There were many nights I just didn't even fall asleep. I have a lot on my mind and I plan to share everything over the next few days - just not tonight. I really am too tired to get into all of it and I am so hoping that I can finally get some sleep.

In the meantime though, I need to figure out why my fuse keeps blowing in the garage/pool/outdoor area and do dishes and laundry before I can get to bed. With that being said, I am going to sign off now. Catch y'all tomorrow...

Day 423 - Jul 26, 2009

I am taking another night off tonight because I still have so much packing to do. We are going back to FL in the morning.

Hopefully I won't be so tired tomorrow night to really catch everyone up.

Day 422 - Jul 25, 2009

I am going to skip writing tonight as I did not sleep a wink last night and I am just so tired. I will catch everyone up tomorrow night.

Day 421 - Jul 24, 2009

Wow. This vacation stuff is exhausting, lol. We had all kinds of company again today and tomorrow's schedule is completely packed. How sad is it that I have to schedule our friends in time slots just to fit everyone in?

But, we really are enjoying seeing everyone. A bunch of Kevin's friends came in today and he had a lot of fun with them.

And I think I am just going to show a bunch of photos from the last few days as there really isn't much to say.

This is Kevin trying to embarrass his friend Kyle:



Here is one with him and his friends today:



This one is Evan and his family (Julie often posts on here):



Here is Kevin with Tracy's husband, Jody:



And this is Kevin with Ashten at the Riverfest:



There are so many more, but I am going to give it up for tonight. We really do have a hectic schedule for tomorrow...

Day 420 - Jul 23, 2009

This is going to be a quick post tonight. I am just so exhausted and really want to try to get to bed as soon as I can.

We had all kinds of company again today and then we took a drive to East Brady to visit some more people and then we went to dinner at the Allstars and Kevin just ran into a bunch of his friends outside of Uni-mart. We just got home a little bit ago and I am just so ready to drop into bed.

So I think I am just going to end now and hit the hay. I will seriously need toothpicks to keep my eyes open any longer.

Day 419 - Jul 22, 2009

Thanks for the support, everyone. I was just so angry last night, but like always - I have moved on. There are just too many things to do and feel in a day for us and I can't waste another minute on them.

Today we had all kinds of company and it was mostly a pretty nice day. I went out with my friends from work for dinner and that was about the only time we had an issue. I'm not sure if I mentioned it, but Kevin has extreme separation anxiety. Because we are rarely apart, he gets very upset when I do go somewhere. I had already went out with Moe for dinner last night and when I went to leave again tonight he got very angry. Uncontrollably. I still went because I can't give in to it, but it's hard and Breezy had a very rough couple of hours having to deal with it.

We are working on this issue. It will help that we have an aide coming in now to help while we are in Florida and it will also make a difference having Breezy back home. The problem is that I just really can't afford to go out and do things all the time just to get him used to being away from me. Oh well, I guess I'll figure it out.

So as I mentioned, we did have a good day. Kevin's friend Evan and his family came to visit. So did some of my friends, some of Breezy's friends, both Rebecca and Mike from the PPG came and then Ronnie came and spent a few hours this evening. Matter of fact, he just left a little bit ago. It is just so wonderful to have Kevin's friends come in and visit him. It brightens his whole day up. I sure wish everyone could just move to Florida to be with us, lol.

And I forgot to mention that Ronnie, Kevin and I went to see the new Harry Potter movie yesterday. Kevin is a super avid HP fan and I have to admit that I like them too.

And now to remark on some of the posts from recently:

Jenna - girl - you should have said something at the restaurant. We would have loved it. We always love meeting new people. And I do remember seeing you there, matter of fact Breezy thought you guys looked familiar, lol.

Jesse - thanks for clearing up that the Legion Riders and the Patriot Guard are indeed two different things. I was getting confused, lol. And feel free to stop in when you make it down to Tampa.

Simpleswine - the odds are slim that Kevin will get another promotion any time soon. He has already had 3 in the last year and I was told that SGT may never happen for him. Someone remind me to talk about the retirement another night as it's a whole post unto itself.

Anne V - I will keep your info about the bike club. That sounds like such fun, but you are right - the timing isn't right yet. I'll let you know when it is though. Thanks!

And now I am going to go watch the ceremony on the A-Channel. I recorded it this afternoon so that I could watch it.

Day 418 - Jul 21, 2009

I wish I knew how to start this post. To be honest - I am just very angry that someone from Kevin's father's (and I really use that term loosely) side of the family would post a reason that Tim did not come to the ceremony or parade.

First - Tim's mother told me that the reason that Tim did not come is because he knew that many people in East Brady didn't like him because of what he did to his kids. I will agree with that and can see no reason why people should like him. BUT - that is no reason to stay away. For goodness sakes - grow up! THIS WAS YOUR SON'S MOST IMPORTANT DAY!!!!!

Second - it just makes me spit nails that Tim can't see past himself to do what his children need. Anyone that sends a text message saying "Happy Birthday" to a kid that we know can't read everything really has only his own interests at heart (I mean really! How much harder would a 30 second phone call be?).

Sunday wasn't about Tim's fears or his sudden wish to eliminate stress. What added more stress was Kevin wanting his father there and Tim not caring enough to show up. Especially on a day that Kevin really could have used him.

I actually told Tim's parents on Sunday that we are very tired of opening doors up to them and them continually slamming them in our faces. Numerous times over the years the kids have attempted to re-enter their lives. I called both his grandparents and Tim and invited them down here the last time. I thought both times went decently well and thought maybe they would be there for Kevin from then on. But did either of them ever contact Kevin again? No.

How much more can you all expect us to do? Seriously??

God! You honestly think that I could give two shits whether you are there or not, Tim? I would have felt nothing to see you in the crowd - that's how little you mean to me. But all of the stress that you do cause is only because your kids (for some unknown reason) care about you and are always devastated when you let them down once again.

I am just mad right now! How dare an anonymous family member try to make Tim sound like a paragon of virtue when we all can see the truth!! It's always been one excuse after another and I would imagine every single person that reads this blog has already seen the light!

Day 417 - Jul 20, 2009

We didn't really do anything today. I knew Kevin would sleep the bulk of the day so I took Rigney back to the airport by myself so that he could head back to Germany. Kevin really enjoyed having him here and I am so glad that Nate took the time to come.

I am also very glad that SSG Wilson and Sgt G (now civilian though) came. I only regret that I didn't get to spend any time with them, but Kevin did and that's more important. Here is a pic of the guys:



Tracy and her husband Jody came in and spent the day here with us. It was just a nice, relaxing time.

Ronnie also came in to visit Kevin on his lunch break from work. We sure love that boy!

And I did want to thank three more groups of people that were very important. There will be more, but I am too scatterbrained to think of everything at once, lol.

Anyway, I do want to thank the Patriot Guard and the Legion Riders (please excuse my ignorance if they are one and the same). It was so moving to have them take part in this ceremony (and in the parade too). I will say that as I came through the barrier the riders created on both nights, I felt so overwhelmed with thanks and I realized then the enormity of what had happened and how "big" it really is. Sounds strange, I know, but sometimes you are so busy living it, you just don't realize how unreal or how monumental it all is.

I also want to thank the Riverfest committee for allowing us to be part of the annual event. I know it added a lot more stress to the weekend, but we do appreciate it.

And to get to the photos - obviously I couldn't be taking any. I have a couple here, but a woman name Hallie sent me a link to her photos that she said I could share with everyone here. Thanks so much Hallie! They are awesome!

Click here to view them.

Here are two that I have:



If you read the comments on the blog, you may have heard of Howard the Duck. Here is a photo of him with Rick and Lorraine. Howard made Kevin smile many times throughout the last year.



I wish I had more photos...hopefully some more show up here, lol.

I do want to share the article in today's Post Gazette as well. You can view it by clicking here. Isn't that photo of Kevin and Breezy just so wonderful? (Rebecca - that totally makes up for the photos of me with a towel on my head, lol!!) There is also video of the ceremony that you can view by clicking here and more stories of other families that are going through similar situations.

And now I am going to answer two quick questions from comments that are a few days old.

Linda - I would love a copy of the Derrick if you still have it. I don't have access to that one at all.

Denver - you asked what I meant by Kevin's retirement...Kevin is still active-duty. I am working on getting him medically discharged, but it's quite the time consuming event apparently. I did research this extensively quite a while ago and because Kevin is basically in the VA system already, there is really just no reason to keep him active duty. I am sure there will be questions about this so y'all can just send them along.

And I think I am going to go eat two pieces of cake now (I can't decide between them so what the heck, right?). One from Joan, who makes the absolute best chocolate/peanut butter texas sheet cake and one from miss Patti who makes a white cake with raspberry filling that is utterly to die for! I am just so hungry!!

Day 416 - Jul 19, 2009

As I mentioned yesterday - today was the anniversary of the date that Kevin left for Basic Training. Such a weird coincidence, huh?

And y'all know that Kevin's Purple Heart Ceremony was today. I was just so proud of him. He did so incredibly well at the ceremony and when it was all over he stood there and met all of the people that came down to talk to us. Hundreds of people. They were all surrounding us and to be honest - Kevin really enjoyed it. It just amazes me how well he did with everyone! It was just so nice seeing him remember people he hasn't seen in so long and he was very courteous to those he had never met before.

After the ceremony, we went to a private dinner that the Legion held for us. 130 of our friends and family joined us - sorta. I could tell that Kevin was over-stimulated after we left the field so he and I took a car ride for some down time. At that point, dinner was already a half hour later than it should have been, so we went back to the Legion, but Kevin didn't want to go in. I left him in the car long enough to go in and talk to each of the tables and explain that Kevin had just had enough and that we were going to go home. Everybody ate and by the time I finished saying hello/goodbye to everyone, Kevin decided he was feeling better and he finally came in the door.

He had a blast and so did I. It was so wonderful to see all of the people that were invited and you couldn't have asked for a more elegant and wonderful dinner than what the Legion served. They completely outdid themselves and I thank them from the bottom of my heart!

I also do want to thank Tracy for putting this whole thing together. It would have never happened if it hadn't been for her just taking the bull by the horns and doing it.

I also want to thank Bruce for being the Master of Ceremonies and Captain Turner (with the help of Rigney) for presenting the medal.

And I realize that there are so many more that I need to thank, but I will do it privately.

I have to be honest and tell you that I am just too tired to post any photos so I will get to them tomorrow night.

In the interim though, be sure to check out the article from http://www.post-gazette.com/. There is also video with a whole bunch more photos. I am anxious to read what they have to say tomorrow too.

I also know that Kevin was featured on many different local news channels, here is what I have found so far:

KDKA News - video on right.

WPXI - Channel 11

And now this lady is hitting the hay! I am just so exhausted...

Day 415 - Jul 18, 2009

Kevin and I went to Riverfest tonight and we had such a blast. It was enjoyable watching him interact with his friends and so far I think everyone is handling the changes in him pretty well.

And after we left the field, we actually went to Allstars - a bar. I was so sure we would be leaving within ten minutes because of the noise and the people, but that boy proved me wrong. To be honest - I couldn't get him to leave for about 2 hours and even then he was angry that we had to go. I was proud of him too, because he mainly had soda, but he really enjoyed seeing his friends and dancing and just being that goofy Kevin. Here are some photos:




Did I mention that he stayed there 2 hours? I couldn't believe it!! And he looks so normal in these photos, doesn't he?

And I am sure some of you have already seen the Pittsburgh Post Gazette today - they are running articles both tomorrow and Monday about various parts of our lives. Mike (journalist) and Rebecca (photographer) from the PPG, actually came down to Florida and spent three days with us a week or so ago learning all of the facets of our daily lives. We had an absolute blast while they were with us because they are both just such wonderful people. I can only hope the PPG sends them again, lol! (not to interview us - just for vacation, lol)

Oh and before I forget - someone said one day about that they could tell I was taking a photography class because the pics that day were so great, lol - I have to admit that the professional Rebecca actually took those ones. Darn. I really chuckled over that comment, but never got around to mentioning that they weren't taken by me.

We also went down to the airport today and picked up Rigney, one of Kevin's comrades - starting on Kevin's very first day in the Army - two years ago exactly tomorrow, the 19th. Fitting huh? His Purple Heart is being awarded on the exact date that he left for Basic.

Anyway, Rigney said he remembers so well sitting down at in-processing next to a kid with all this long black hair. Those two went through everything together - Basic, AIT, jump school, Germany and Afghanistan. Rigney was also there the day of the attack. He is such a great guy and I'm glad he is here with us.

And now I need to get to bed because tomorrow is such a big day.

Day 414 - Jul 17, 2009

For those of you that saw my update earlier letting you know that Kevin was not going to participate in the parade - I am sorry. Kevin was not feeling well most of the day, but he took a long nap and when he woke up (not 15 minutes after I posted the message) he wanted to still come to the parade. I hurriedly removed the post, but I don't know who all saw it. (Sorry to the Reeves Gang as I know y'all did - I tried to find your phone number to let you know of the change of plans, but couldn't find it)

Anyway, Kevin did go to the parade and I think he really enjoyed himself. He loves children and got a real kick out of throwing candy out the window. It was just so nice to see all the people we know - even from the car window in the pouring down rain.

We were also interviewed by KDKA and you can see the story and watch the video in the right column. Click here to view it.

And on a kinda sad note - it's very hard tonight to be sitting here and not out having a good time with my friends. Riverfest weekend is always so fun and I so wish I could be out with Moe and everyone else having a good time, but I guess those days are pretty much over for me. I can usually handle it in Florida because I don't really know anybody there to go do things with, but here in PA - I miss my old life. I miss the freedom of just jumping in the car and going for chinese, or dancing the night away at the Allstars and the Cloud or just any of the multitude of things I once had the freedom to do. I am just so jealous that all my old pals are out having a blast tonight.

But I guess I just need to get over it and as my favorite Airborne commentor says - wipe the sweat and drive on!

And now I am going to leave you with a photo of the kids while they were sleeping on the plane. It's just such a wonderful photo, huh?

Day 413 - Jul 16, 2009

Kevin did so well again on the flight. I was really worried because this flight was just full of kids, but he really handled it well. I have to admit that it wasn't as 'fun' as the last flight, but how could it be, right? LOL!

And I wish I had the energy to write more, but I just don't. We have traveled all day and we also had a run-through of the ceremony to make sure Kevin could get up on the stage.

So now I am going to do something I haven't ever done before. The Wounded Warrior Project is asking for help to get legislation passed to help people like me earn a living while taking care of our family member, as opposed to losing everything we have worked our whole lives for. I am going to copy the email and paste it here in the hopes that some of you can take the time to send a letter to your Congressman.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

WWP NEEDS YOU TO MAKE THREE CALLS TODAY TO HELP PASS LEGISLATION TO ASSIST OUR MOST SEVERELY WOUNDED WARRIORS AND THEIR FAMILIES!!!

Background: WWP’s top priority this year is for Congress to pass legislation to establish a national program to compensate, train and provide ongoing supports to family caregivers of our most severely wounded warriors. Our advocacy helped win introduction of landmark legislation in both the Senate and House of Representatives to establish a family caregiver assistance program for these warriors. While the Senate bill (S801) won committee support and could come to a full Senate vote in the coming weeks, the House of Representatives version of the legislation has not gained needed momentum, and is being overtaken by a much weaker bill that DOES NOT include Caregiver Compensation. Compensation is the most vitally needed area of support for these families and must be included in any caregiver support measure.

YOUR HELP is needed to build support for this critical House bill and thereby help win passage of the strongest possible caregiver legislation this year.

Action: We urge you to contact key Representatives and your individual Representative by:

1. Calling their offices today, and again during Family-Caregiver National Call-InWeek, July 20 through 24; AND

2. Sending a letter to your Congressman. You can use or adapt the text of a sample letter on our website at www.woundedwarriorproject.org/caregivers

Calling your Representative:

1. Call Congressman Bob Filner (D-SD), Chairman of the House Veterans Affairs at (202) 225-8045 and using the talking Points below ask that Chairman Filner ensure that family caregiver COMPENSATION is included in the Caregiver Support legislation that will be approved by the Veterans Affairs Committee.

2. Call Congressman Michael Michaud (D- ME), Chairman of the House Veterans Affairs Subcommittee on Health at 202-225-6306 and using the talking points below ask that Representative Michaud ensure that family caregiver COMPENSATION is included in the Caregiver Support legislation that will be approved by the Veterans Affairs Committee.

3. Find your Representative by zip code: http://www.house.gov/zip/ZIP2Rep.html.

4. Call the US Capitol Switchboard, 202-224-3121, and ask to speak with your Representative’s office.

5. Using the Talking Points, below, ask that the Representative to co-sponsor HR 2342.

Talking Points:

1. I am a wounded warrior (family caregiver of a wounded warrior/ concerned citizen), etc.] and I’m calling to ask that Representative _____ take immediate action to provide family caregivers of severely wounded warriors with COMPENSATION, health care coverage and respite opportunities to sustain the care these warriors are receiving.

2. Family members whose loved ones are severely injured in Iraq or Afghanistan have given up jobs, lost health coverage and other benefits, and depleted savings to provide them full-time care. They have often taken on this burden without any help from VA, despite the emotional, physical, and financial strain caregiving takes.

3. We must IMMEDIATELY provide these supports or my fellow wounded warriors will end up nursing homes and institutionalized for the remainder of their lives.

4. I hope wounded warriors and their families can count on Rep. _____ to take up this call for action.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Tomorrow night Kevin is in the Riverfest parade so if anyone is in the area - we hope to see you there!

Day 412 - Jul 15, 2009

I won't be able to write much tonight as I am still packing and doing laundry and dishes and everything else necessary to go away for a few days.

I do want to say that if you want a "KEVIN" T-shirt, you can call Tracy at 724-526-5959 and she will be able to help you. She did tell me to tell y'all that there are only larger sizes (XL and up) available.

Also, someone asked if they could take pictures at the ceremony and the answer is yes. I hope to see some that you guys take.

And now I am signing off. Wish us luck on our flight tomorrow!

Day 411 - July 14, 2009

Not much really happened today. I took Kevin for a haircut because he was starting to look like the old skater punk from the past and I just didn't think it fit the occasion for Sunday. Once that's over and he's 'retired' from the Army, he can do whatever he wants.

And that's about it. I met with the pool guy today to get the landscaping down and the fencing down and the outdoor kitchen down and the alarms down so that the pool is 100% complete upon our return. He assured me it would be!

We didn't have therapy today because it is closed on Tuesday. What a bummer, huh? But tomorrow we are back in the groove.

And now I am just going to answer a few comments real quick.

Cathy M - I got the book! I still haven't unpacked The Shack or My Stroke of Insight so I will try to grab it before we head to PA. Thank you!

Jessica - yes, Kevin's medical coverage will accept civilian hospitals. It is my goal to find a neurosurgeon that is not a resident so that we 'keep' him for years and not get a new one every 6 months. I think that is a vital key to Kevin's shunt/brain damage situation.

Kathy in IA - I didn't let Kevin's license lapse due to the date - I could have renewed it online, but I did it because he has lost all the vision from center line completely to the right (in both eyes) and he will more thank likely not be able to drive again. That was such a hard thing for me to do. It still hurts and I am starting to cry about it again so let me move on.

Actually, I really need to get to bed. I will try to hit some more tomorrow night.

Day 410 - Jul 13, 2009

YAY!! Kevin did so well at both bouts of therapy today!! He went with no problems today and he had such a good time - both in the morning and the afternoon! It didn't hurt either that his physical therapist is from the Pittsburgh region, lol. I seriously think it is (in part) because of us being able to leave 15 minutes before it starts as opposed to an hour and fifteen minutes ahead of time. And once we get there we just park immediately right at the door - no driving around for a half hour looking for a spot. I am just so excited! He worked hard today and I feel like good things are going to come out of this!

I didn't mention to you guys that Kevin so desperately bought himself a pedal bike last week one day (we walked around every dept in Target for about 15 minutes trying to find it because I didn't understand what he was looking for). I think he remembered BMX so he bought himself one of those little 20 inch types of bike - something from his past. So anyway, I was so worried about him trying to ride it because realistically he's just not ready for that yet. So I had my mom and dad stay until he tried to get on it (just in case he fell) and he tried and tried, but he just couldn't figure out how to even get on it. It was very hard for me to watch him get so upset because of his limitations. After he couldn't get on it he just went to his room and shut the door. I just pushed it into the den that is empty and put it out of sight.

So now we are going to work on him riding a stationary bike at therapy and he will also use a treadmill soon. Hopefully he will get to the point where he can ride because I love to go bike riding. I really am so very excited - and so is he. He came right home and told Breezy that he LOVED therapy!

YAY!!!!

So now I want to just quickly mention that I hope everyone does get to come to the ceremony. It really is just the length of the show that I am worried about. I think Kev is going to get a kick out of being the center of attention - but only for so long.

And someone did ask for directions (I remember it being in my inbox, but I don't remember who - sorry) and if you are coming from Pitt/Butler/Kittanning you will come over the bridge into East Brady, come the whole way down Main St, start up the hill and make any right turn. Go to the end of whichever street you choose and you will pretty much be there, lol. There should be Riverfest signs that can be followed as well.

If you are coming from Rimersburg - come down the hill and take the second left. Go all the way to the end of the street and you will be there.

And just to put it out there - if you have a "KEVIN" shirt - feel free to wear it that day. I think I heard they are trying to get everyone to wear one.

Day 409 - Jul 12, 2009

The party went great! Kevin enjoyed himself, but I do admit that he spent quite a bit of time in his bedroom because there were so many people here and it was a bit noisy for him. But he did come out intermittently and he really did have fun when he did. As you can see, he did eat well:



It was a very nice party and it was so great to see everyone. It's so weird to basically 'live' with a group of people and then bam! You hardly ever see them again.

I am hoping now though that we can all get together more often. There are a couple of scrapbookers in the midst so we may get together and scrap. That will sure be fun.

Moving on - before I forget - I want to touch on a subject that will probably offend some people and it really isn't my intention. This is in regards to Kevin's Purple Heart Ceremony and the fact that it has become a HUGE event - too huge for Kevin's stimulation situation.

A couple of weeks ago I saw that there were more and more organizations that wanted to be part of the ceremony and when I talked to Tracy - I will be blunt - I told her "NO MORE". It is nothing against any organization or person - it's truly all about Kevin. I am so incredibly nervous about the length of time that the ceremony is because Kev really can't handle it all (today proved it). The last thing I want is for Kevin to miss his own ceremony and I think at this point it is a very real possibility.

So I just want to say that if Tracy is having to tell you that you or your organization really can't be part of it - it's because I asked her to and I am very sorry, but it's so necessary if Kevin is at all going to have a chance at making it through his own ceremony.

I sure hope we get to meet the people that comment here on the blog and my message is in no way geared toward people witnessing the event, it's just about keeping the actual ceremony as short as possible.

I truly hope everyone understands.

And to touch on a few of the comments from the last few days - first to Barbara B - I didn't realize that you meant his appearance but believe me - I do see the changes there. I must say to him fifty times a day "I am just amazed at how great your chin/neck etc look". I really am amazed too. I never (in a million years) thought that he would look this good! And don't worry Barbara - I wasn't mad or upset.

I also totally relate to the 'diva' comment. Kevin demands so much on a daily basis and it all must be done NOW. He doesn't understand patience and I am now working on him getting up and doing things for himself. He just doesn't get it though, but I'm still trying.

And so far he says he will go to therapy tomorrow so we shall see. I have often used the 'ordered to go by your commanding officer' line, but let's be real here - there is no real military presence here and it's even worse since we are home. It just doesn't wash.

There is more that I want to say about this, but it will have to wait until a different night as I am just too wiped out to delve into it.

And now I am going to leave you with two more photos. Notice the concrete has been poured around the pool? They assure me it will be COMPLETELY done by the time we get home from PA.