Wednesday, July 29, 2009

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.

19 comments:

Lisa D in Ca. said...

Leslie...you should not have to defend yourself. Not one bit....not for one second.

Anyone that reads here should know that when you say Kevin is doing "well" or "great" that it isn't like any other 20 something boy doing "well" or "great". I'm across the whole dang country and I know that.

I didn't read the comments from yesterday, but that is probably a good thing, because I'm pissed off just thinking of you feeling the need to explain yourself in this way...and appalled that anyone would suggest you "get a job". Taking care of your son is more than a full time job...and that is before you get to the emotional crap. GET A CLUE PEOPLE!

I also have to add that I personally am embarrassed as an American citizen that there is not already a program in place for you to be paid as a caregiver. In any situation, but especially because Kevin was injured serving our country...for Pete's sake.

There is something here in California called "in home support services" which provides for a family member to be paid as a caregiver if a child is disabled and requires 24 hour care. (specifically an older or adult child-because a baby requires 24 hour care if they are healthy or not) Is there nothing like that in Florida? There freaking should be.

Sorry...I don't comment a lot...but I read every day...but this just pisses me off...so I've written a book.

Stay strong Leslie...YOU are doing everything right, it is our country and people that just don't get it that are letting you down.

Anonymous said...

Leslie,
I think that most people commenting yesterday really meant well but did not realize that Kevin has to be watched and taken care of as you would a toddler.What most people see/read is the "good" things like Kevin's
daily improvements etc.Also,it's easy for us to make suggestions but until we have walked a mile in your shoes maybe we should just offer our words of support. I know that I myself wouldn't understand your situation if I didn't get updates from Moe and Tracy. I hope and pray that the government gets moving (alittle quicker) and gets things straightened out with Kevin's paperwork .You are all in our prayers and thoughts...
Kim S

Anonymous said...

leslie, i feel sorry for you and know God will reward you when the time comes but i also know the man above has a payday for all these nervie idiots that point their finger at you and say nasty things.let these morons walk a mile in your shoes,let them see what you go through in the course of a day and they would be taking the bridge or theor loved one would be put away. i work in a nursing facility and what you do in 1 hour i have in 8. america needs a reality check... instead of looking at the finger they are pointing at you they need to see the 3 fingers pointing back at them. WAKE UP ALL YOU FINGER POINTING ASSHOLES !!!! this is a family, an american family, a family hurt because a hero was fighting for your sorry ass to have the FREEDOM you do not deserve. instead of degrading this angel of mercy dig deep in your moldy ass money pocket and help them out. by the looks of it our wonderful government can't do anything but pay for stupid things like closing a whole town so 2 little girls and their mother can eat fish and chips in snother country. leslie, i have never met you or kevin but i have read mended wing for about a year. i want to commend you and tell you God will reward you and your family. if i could i would be right beside you to help you, maybe these trashy mouth money worriers will give up their time and their lives and wake up and walk a mile in your shoes,when the time comes that the situation was in their household.luv ya and God bless ...penny

Anonymous said...

I reread the comments from yesterday and didn't see anyone who commented being purposely disrespectful. You have so many people you don't even know who truly care about you. You are the first person many of us check in on after awaking in the morning. You and your family's blog is that important to us. I know it is to me. I think everyone is so wanting to give you ideas and help. None of us would want to be in your situation. I agree with Kim S that we don't know how much Kevin has to be watched. And it's too easy to make suggestions when we are not personally in your situation, but our hearts ache for you and most people just want to help. You have done an awesome job with Kevin and are a great mom!
--Jen

Anonymous said...

I'm so glad that Kevin likes his new helper. What great news! :) I hope in time he will get better with the separation issues and give you more time to get your things done.
I think we need to read, listen, and give support to what you write in your blog. I know you don't share everything in your lives and therefore we really have no idea what it is like on a daily bases.
Continue to do what you do- you do a fantastic job!
Thank you for sharing your lives with us and I pray that things get better really soon!
Take care,
Kathy in IA

Patricia said...

Leslie, although I wish you did not have to defend what you write, I am glad the clearing up of what your day is like, went on post.

There have been many references to Kevin's need of you throughout these posts, but it was well worth the read for many others to be reminded just how often it was. You HAVE , in fact, laid out details of your day before, but like all "students" (which we are), sometimes the information gets lost, or forgotten.

I was explaining my dismay with some of the posts, and my reaction to my husband, and that is just what I said. Kevin is more toddler than twenty. Also, with a brain injury, comes a whole set of problems, with separation anxiety being predominate.

I meant what I said about your courage. Not JUST for your care of Kevin, but for your willingness to take all of us on this journey with you, knowing full well, there will be those you might misconstrue the facts, however innocent the comment might be.

Again, what I pray for is some small miracle, that alleviates the situation.

I do have a question. Was the caregiver who came the day he would not cooperate, the same one that he loved so much? If not, then his childlike senses are kicked in! We all know children can sense a fake or disingenuous a mile away. Maybe he is picking up on that? Just a thought.

As many of these posts have said today....we really love your family and pray each day for your needs. All of them.

May you find financial peace of mind.
May Brianna find a job she loves and feels safe in.
May Kevin continue to heal and grow back into his intellect and knowledge.
And may God grant you the strength to continue a job that so many of us have no clue as to its enormity.

Love, prayers, hugs, always.

Patricia said...

oops....."there will be those you might misconstrue the facts, however innocent the comment might be."...the word should have been WHO not YOU....geeze!!!!!

Anonymous said...

I am one of the posters yesterday who made a suggestion of a possible part-time job. I saw that as a potential solution to Leslie's financial worries, and meant the comment to be helpful, not to affend anyone. After reading Leslie's post of yesterday, I can now understand how difficult it would be for her to find a job that would be accommodating to her special circumstances. And yes, because she does not elaborate daily on the constant challenges of taking care of Kevin, I think that many of us reading this blog have the impression that Kevin is closer to being his "old self" than what he really is.

I am disturbed, though, that some of these comments basically attack other posters who make what they intend to be helpful suggestions. I don't think it's necessary to call people names just because you don't share their vision of things.

In a perfect world, we would all have extra money at the end of the month to give to the many, MANY people in this country who are suffering terrible financial hardships and don't know where their next meal is coming from. But as we all know, this is not a perfect world, and many of us have all we can handle just to keep our own boats afloat. I don't know what the answers are for Leslie's financial woes. If that bill becomes law to compensate her for what she does, then another hurdle will be cleared. But until that happens, she has some difficult decisions to make. I think we all need to brainstorm for potential solutions, but not attack someone else who suggests something that we don't see as a viable solution. There IS not a perfect solution, and as they say, "difficult times call for difficult measures."

Behind you no matter what said...

Moral of this story is think before you post people. Yes our economy is terrible right now and people do struggle on a day to day basis. But lets all remember that we didn't give up our lives to Army and come home in the mindset of a small child. I would bet that half the people that are blasting you on here wouldn't be able to do half of what you do...I think they would give up and put there child in a home. The facts are there in plain sight that this is no easy task for anyone to take on. Besides that fact that you dropped everything to be at Kevin's side no matter what the outcome was says a lot about you as a person. This blog is away for you to keep in touch with the people that ACTUALLY care and want to be there with you every step of the way. NOT for people to critize and throw out their two cents because that's what they THINK they would do. Half the people that comment and upset you are the people that when push comes to shove would give up and walk away. Your a fighter and always have been and it's okay for you to vent to us. There is nothing more amazing then the story of Kevin and what he is fighting through. But the sad news is he is in a 21 year old body with injuries that have set him back to toddler days. So for those people that blast you go get bent and jump of a bridge. We should all be thankful that you take the time to blog and keep us up to date on a daily bais. Your hometown and community stands behind you every day. It's wonderful to see that people in CA and other states see you for such a wonderful person and see the struggles you endure. And I would bet these people haven't even met you. So the the bloggers that blast you think before you post and remember this is no family down on there luck looking for help. This is a family that struggles every day with a son/brother who is not the same person but is alive. My heart goes out to any military family that has lost a loved one.

Anonymous said...

I don't know what it is that some of you think you are reading, but I don't construe any of these comments on this blog as "blasting" Leslie. I think everyone posting here have hers and Kevin's best interests at heart, and are only trying to help.

Tracey Klaas said...

Wow! I myself never realized how demanding Kevin is at this point. I have to admit that I thought it was a totally different situation that what it actually is. I have even more respect for you Leslie. God Bless. You will be rewarded in His time.

Tracey from Pittsburgh

Anonymous said...

I don't think leslie is being blasted either. Not sure what blog entries these people are referring to. 99% of comments are FOR leslie not against her.

Tom D.

Jess said...

Hey Mamma Leslie!

Keep your head up!!! Love you three always!!

Jess

Anonymous said...

"I only wish that I could get donations to live on but thenn I just have myself to worry about."

From an anonymous poster yesterday...

Jodi said...

Leslie, Breezy and Kevin,

You are loved and supported by so many out here. We will NEVER completely know or understand EXACTLY what you go thru day to day. But please know, all three of you are inspirations to so many of us. You've been thru hell and back, and are continuing to go thru a certain kind of "hell" that could never fully be explained, and should never HAVE to be explained. You are strong and amazing people that I admire and look up to. I wish I could do more to help you financially, but please know that every day, I send my love and positive thoughts your way. You will be okay Les. I don't know how or when, but you will be okay. You've made it this far, and you will continue to move on, day to day. Please stay strong, stay positive, and keep that smile on your face that we've all grown to love.

BIG HUGS AND ALL MY LOVE TO ALL OF YOU!!!!!!!!!!!!!!!!!
Andrew's Aunt Jodi

Anonymous said...

I must be reading a differnet blog because i certainly did not see any posts that were disrespectful. There were posts with suggestions and like people who try to make suggestions about how to improve anyone's situation, they are usually totally off the mark. i did not see one post that said, "Wow, you're living in a quarter-million dollar house with a big pool and now you're crying for money." I'm sorry - I must have missed that one. I really do not think that any one of us would even think that. I, like many, read your blog EVERY day. My daughter traveled to San Antonio last July (despite almost being killed the day before her plane took off) to a youth convention for one thing - to take money and cards to show OUR support for Kevin. I traveled to Kevin's ceremony(driving 100+ miles) because I truly believe Kevin is a hero. He deserves to live in a multi-million dollar house with every comfort he wants or can think of wanting. He offered his life for OUR freedom. the freedom to get up, the freedom to voice our opinion, the freedom we take for granted every day. He lost his freedom to be a 21 year old. He made the sacrifice because he BELIEVED IT WAS THE RIGHT THING TO DO.
I do not want this blog to become like a soap opera. The reason I read is because I pray daily. sometimes I don't think my prayers help but when I read about Kevin, I am enlightened to know there is truly a God. You work hard for Kevin but there is someone working even harder for him!There is a REASON Kevin survived. God has a plan; you must have patience and faith.
If there are truly people saying crap about you, learn to ignore it. No matter what you do or say, there will be critics and you leave yourself WIDE open on this blog. Remember there are more of us who hold you in our prayers daily than who wish you ill.

Worry is in our lives because it is a form of evilness. When you worry, you lose sight of THE PRIORITY.

Rise above it as you always do. Take a good look at your life. Do what you can, put your faith in God, and do as you always do....trudge on.

Thinking and praying for you,
Hallie

Anonymous said...

Les,I am so darn mad right now I would like to kick someone's rear. How dare they say things like that to you. Who do they think they are. I guess they don't know you like I do and I am here to tell these kind loving people to shut up and keep your stupid thoughts to yourself because you don't know what you are talking about. How many of you know it alls knew Leslie and her family before all of this and how many of you are willing to do the things that she has done and give up your child as she has done. Not only the HEARTACHE but the care and the tears and giving up your life as she has. I am heart sick Leslie to think that you have to defend yourself to these jerks. You my sweet friend do not need to defend yourself or explain to anyone. Maybe a few of these people should sit down and read the Bible and pray a little. It certainly is a good thing that God doesn't feel about them as they have written about you and your family. They are the disgrace to our country while Kevin gave his life as he knew it for them they are condemming his family. Maybe who ever thought you should get a part time job should maybe offer a few hours of their time everyday to stay with Kevin oops I bet you just couldn't do that though could you??? Cut the crap and if you can't be nice don't bother posting to hurt people you don't know. Keep your chin up honey and know that we love you. Pam PS If you people need to be nasty be nasty to me my shoulders are broad and if they can't hold it all my big old hips will catch the rest.

Janna said...

Maybe I missed the shit-head blogs too...I didnt see anyone saying anything about the house, pool, furniture or anything else that was offensive...maybe I missed it. What I do know is how hard it is to take care of one's child who has problems...something nobody else can see or take care of. I NEVER judge you Leslie, knowing how hard it is. And I do know. You are loved and prayed for, as is Kevin and Breezy. So many of us love you. Please read "the shack" and when I can send more money I will. God bless all three of you...from someone who understands.

Denver said...

> you should not have to defend yourself.

I agree.

I understand trying to be helpful -- I try to even though I stumble around a lot.

I can understand a newcomer not knowing that the house/pool/appliances/furniture/van/etc belong to Kevin.

I do not understand suggesting to Leslie that she should get a job.

Does anyone think she wouldn't have thought of that?

Leslie knows how to work and to run a business. So if either were possible, she would do it.

***

So let this be a reminder to us all to question our assumptions.

Instead of saying she must have lots of money, read her previous blog entries to get the story.

Instead of suggesting a job, ask how much free time she has.

I wish Leslie had time to testify before Congress. Indeed, all of America needs to know that our nation is not taking care of its enlisted soldiers.

Money is being handed out like candy in Iraq and Afghanistan. It's past time to starting paying the real costs back home too.