10 Long Years!

It's so hard for me to sit and realize that it's been 10 whole years since Kevin was injured.  How our lives have been forever changed - and how desperately I wish I could turn back time.

I know I haven't written in a very long while.  We had some really great years with Kevin, but that was all changed again 3 years ago when he had surgery and somehow ended up with a Chiari Malformation.  A CM is basically where his brain is being sucked down into his spinal column.  He woke up from that surgery screaming in agony and it has never changed.  Kevin now lives with a level 7 pain 24 hours a day - every single day.  For three long fucking years.

It is very hard to watch your child suffer so much.  He has been suicidal now for almost 2 years...every day...all day..."MOM...begging you...die.  Just die."  He is literally begging me to let him die.  To help him die.  He wants me to hold his hand and sit there and watch him fade away.

I don't think I can do it though.  I came home from work one day and he had an Army knife held at his gut.  He was screaming and crying and begging me to let him do it.  I was crying and screaming right along with him telling him "NO.  Please don't.  We love you".  But watching him suffer - is that really love?  Sometimes I feel like such a selfish person because I don't want to lose him.  All the times he called me while trying to overdose and I had to run to his room screaming and grabbing the bottle of pills...should I just let him go?  Should I just let him do it?  Will I go to jail if I do?

I hate that his is our life now and I really hate that he no longer laughs or smiles.  Through all of the worst in the beginning - he still always joked and laughed and loved to ham it up for the nurses and anyone else that came near him.  Not anymore though.  There are no jokes.  He just sits there with a vacant look in his eyes when company comes over.  He could care less and it's only when I force him that he even comes out of his room.

I know that a huge part of his problem is depression and I assure you - I have asked the VA for help.  I have to sarcastically laugh because the VA decided not to put him on any anti-depressants, but to have Kevin do in-home psychotherapy via a type of Skype.  Hilarious, right?  I mean...he can't fully talk and he sure isn't going to remember what they say to him an hour later, but what the hell, let's just waste our time. 

BUT - I did take him to Phoenix to see a neurosurgeon there and although there was nothing else he could do, he did at least prescribe some meds for his depression.  It's only been 3 weeks, but I was able to get Kevin to come out of his room to play Skipbo last night...that's a good sign...

So anyway, this is definitely not a positive post.  I am at my wit's end.  I am beyond stressed from trying to keep him alive and from trying to decide if "end of life" measures should be taken.  I hear Switzerland is the place to go, but I still just don't think I can do it.  The thought of not having my son in my life is devastating and I just don't think I am strong enough to help him die.  I just keep hoping that some doctor will step up and know how to fix it.  Or find some kind of drug that will help with the pain (tried Fentanyl, Dilauded, Marijuana, Morphine - you name it - we tried it).  I just wonder when the hope will end for me.  And therein lies the problem - it already has for him...

Has it really been a year?!!

I can't believe I haven't written in a full year!  Things have been so busy for me.  Not only am I taking care of Kevin, but I am running 2 successful businesses.  I have just sold one and as of June 1, things will hopefully be more manageable. 

Anyway, you all know it's that week, right?  The dreaded Alive Day week.  I admit I'm crying while writing this, but I am going to only focus on the good things during this post.

So I took Kevin, my mom (who now lives in Texas - YAY!), Breezy, Chris, Christian, Kevin's friend Austin and Moe to Jamaica a few weeks ago for a belated family Christmas gift.  Kevin has been saying the word "Jamaica" for a couple of years now so I figured "why not?".  We had a really great time and Kevin went snorkeling and... (watch video below and please excuse the shakiness - I was standing up in the boat)



Yep - he even went PARASAILING!!!!!!  He had a blast.  I was scared to death to let him do it, but I will not allow my fears to hold him back.  It was tough though.  Kevin has put on quite a bit of weight and it took 3 strong guys to get him onto the deck of the boat to be lifted into the air.

He does want to go back to the lovely Jamaica too, but only because his sister wouldn't allow him to cliff jump into the water at Rick's Cafe (I stayed at the resort with Christian).  Maybe someday...

And here is a pic of a character cruise we went on - it will show how great Kevin is looking:

Other than that, we haven't done too much this year.  We did go to the rodeo and that was fun! Neither of us are into country music so the Tim McGraw concert part was kinda funny for us to be at.

So we went to BAMC today to get a new leg brace.  It didn't go well.  Kevin has a really hard time walking nowadays, but unfortunately, the bad habits have been set in stone.  The new brace won't allow him to walk incorrectly so it's going to take some adjusting for him.  He was really upset when we left and I pulled the ortho guy and his therapist aside and told them I would work on him accepting it over the next week.  Wish me luck.

Kevin has also started bowling.  He just got home with his aide and is now ensconced in his room.  I love that he is trying to be more active, but he is in so much pain right now from his leg that I often wonder if it's worth it.  He does swim though and that doesn't hurt him.  We put a pool in late last summer and that is excellent exercise for him!

Well, my boy is calling me so I guess I better wrap this up.  Thanks y'all, for making me feel better!

5/31/13 - Alive Day #5

Yes, today is The Day.  It's been 5 long (oh so long) years since that phone call came in.  I have been thinking all day about what to write on here, knowing that I had to today of all days.

I really did ok today.  I've been kinda bitchy, but I suppose that's allowed.  It's just hard - hard because I look at Kevin and see two sides of him on this day of the year.  The side that is such a miracle because he really has conquered so much over the last five years - I mean seriously - look at who he has become!  Look at what he can do!

But then there's that other Kevin.  The one I catch a glimpse of every now and then, but I don't allow myself to focus on.  The one who is burned and broken.  The one who tried so hard to tell a story tonight and just couldn't.  The one who still sees doctors every single week - and had to take so many pills.  The one having seizures that I am told can become grand mal at any time.  The one that is walking slower and slower as time progresses and who just lays in bed all the time because he is so limited on what he can do.  The one who is so damn lonely because he has been mostly forgotten by most of his friends and even worse - most of his family.

That is the Kevin that just breaks my heart.  And although I try so hard not to focus on the negativity, I just can't seem to NOT do it on this day every single year.

So, with that being said - I think I am going to just curl up in a ball and cry for a while.  I rarely do so, but I'm just gonna do it for a bit tonight.

And then I'll get up, help Kev with whatever he needs and like our good friend Butch says - 'wipe the sweat and dive on'.

To the Sheilds and Findlay families - I really don't have any reason to complain when I think about what you all feel.  To suffer the complete and utter loss of your loved ones has to be even more devastating than what we go through.  You are all in my heart on this day and every day.

To Daniel - I am so proud at how far you have come as well.  I know life isn't easy for either of you boys, but we are here for you should you ever need us.

April 2, 2013

I know...it's been forever since I have written!!  Things are always hectic, but running a business and taking care of Kevin are both full time jobs and trying to do both is exhausting.

Anyway, so many things to share.  First (and you might want to sit down for this one) - Kevin actually has a JOB!!  I got a call from a producer doing a PBS special and he came down for an interview.  We went to lunch at a little cafe just a few minutes from the house and I noticed how well the employees treated Kevin (apparently he eats there often with Johnnie),  As we were leaving, I asked the manager if there was anything that Kevin could do there.  She discussed it with the owner and sure enough - they had Kevin go in for an 'interview' and offered him the job.  He is working about 5 hours a week and I am so excited for him.  He is doing so well in his recovery and needs to do 'normal' things.  This is a huge step for him and I am hoping it works out long term. 

I think the most awesome thing is how well Kevin is talking.  We recently went to the BAMC Burn Unit's 10th Anniversary Event and people even commented on how well he is speaking.  New things are just popping out of his mouth all the time and it's funny because even he will be surprised that he can say something.

I really think that his talking better has a LOT to do with the WWP's (wounded warrior project) Independence Program that Kevin is partaking in.  We have a speech therapist come a couple times a week and he works with Kevin.  He has made amazing strides in the last couple of months.

Things aren't just perfect though.  We were supposed to go home to East Brady for the Easter weekend and Kevin ended up in the hospital for a few days.  It was the same as last time - intestinal blockage.  I guess we will be having this issue the rest of Kevin's life.  They told me his insides are just a mess (no surprise really) and he has so many adhesions that his intestines can have problems constantly.

Kevin is also still having 'seizures'.  The docs can't find evidence of this because they don't occur often enough to be seen on his already messed up EEG.  Obviously no brain study on Kevin is going to be normal, so the neuro-seizure specialist told me he 'assumes' they are seizures and wants to put Kevin on an anti-seizure medication.

My first instinct was 'absolutely not' as they are so altering of a person's personality.  But I recently read on article that stated that 1 in 3 epileptics die not from the seizure - but of the fall during one.  Crikes.  I called the doc right away and had them send the meds.

We haven't started them yet though. I was waiting until we came home from Pittsburgh.  I guess I should do it now...

And I think I'll end with some pics of things that we have been doing.

Here's Kevin and Johnnie with the Harlem Globetrotters:

Here is Christian at his 2nd birthday party:

And hunting eggs on Easter Sunday;

Here's Kevin goofing off with my friend, Aggie, who came down over Christmas break:

Here is a photo of Breezy and her family at Christmas:

And last, here is Christian taking a nap on uncle Kevin:

I will try so hard to come back more often.  I hope everyone is doing well!

Dec 25, 2012

I just wanted to pop on here and wish everyone a very merry Christmas!

Video of Kevin

Here's the video I mentioned in my post earlier today:

Nov 11, 2012

Happy Veteran's Day to all of our past and present military!  I sure hope everyone had a great day filled with a nice free meal somewhere!  For the first time we actually left the house on this day.  We know it's usually really busy at all the local restaurants and it was always kinda a struggle with Kevin's over-stimulation, but we rarely have that problem anymore (I know how to head it off now) and Kevin wanted to go to Olive Garden.  So we loaded up at about 5:30 and headed out.  The wait was only 30 minutes so we unbelievably got a seat at the bar and Kevin enjoyed a Bud Light while we were waiting for our table.  He thoroughly enjoyed his Sausage Rustica and I enjoyed the small bill, lol.

So I know I mentioned uploading some pics of Christian as a cowboy for Halloween.  Here are those pics:

 

 

Isn't he just the cutest little cowboy?  LOL!

I also mentioned recently that I would try to get some video of Kevin just rambling.  It's not easy to come up with things to talk about into a camera, so I just tried to be normal and have him not think about it.  I think you will all be amazed at how well he is talking now.  Thinking too.  The other day I asked him how much 10% of 1500 was and he didn't even have to think before saying 1 -5 - 0.  He's not good at saying one hundred fifty, but he can say the numbers out in a row.

Anyway, the video has taken 6 hours already to upload (and I fell asleep in the middle of waiting so my post is a day late) and it's still not done.  I will come back and post a link to the video as soon as I can.

Nov 1, 2012

Well I haven't seen Kevin this excited in a very long time!  Tonight he (unbelievably) tried something new - he went to a Spurs game.  He has NEVER been interested in basketball, but when I suggested he and Johnnie go, he said "ok".  Believe me when I say I jumped right to the Ticketmaster website because I can hardly ever get that kid out of his bed.  He just has no desire to do anything.

BUT - he did go tonight and had a fabulous time!  He came home just about stumbling all over these new words trying to tell me they were tied until the last 5 seconds and the Spurs took it home.

To add to it, he got 2 coupons for free Big Macs and a t-shirt.  He loves his Big Macs so he was really happy about that too, lol.  He even took a pic of the coupons with his phone and texted it to me!

In other news, Kevin had Botox recently and we had to go today and have his splint reworked.  He is making gains on getting his hand opened a little bit.  It's always been pretty clenched, but it's actually loosely turned in most of the time now. 

We also had our second session of laser hair removal today.  That is very painful to watch him have done.  He is just jerking all over - I am guessing it must sting pretty badly because Kevin doesn't usually feel pain too much.

So we have company right now.  We met a woman named Opal when we were staying at The Family House in Pittsburgh last year.  She came down on Tuesday to stay for a week and we are having a great time.  Kevin is enjoying harassing her, for sure, lol.  We actually went out for dinner and shopping tonight while the boys went to the game and that was really nice for me!

And that's about it.  Once I get the Halloween pics downloaded. I'll post them.  Christian sure was a cute little cowboy!