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!