Thursday, May 7, 2009

Day 341 - May 7, 2009

Thanks everyone for all of the kind words and comments. Believe it or not - I agree and already know everything y'all are saying. I know - more than anybody - exactly how far Kevin has come in the last 11 months. I remember what it was like when he was in a coma. I remember when the doctors told me he would never be more than three years old. I remember all of it. Every excruciating instant. And every wonderful one too.

The problem is that I am sitting here in the dark for hours. I can do nothing but think. I do this every night anyway and most of the time Kevin and I have had a good day so it's okay to think about it. But Kevin has been struggling with his emotions this trip and it is making me realize things that I have always been able to look past.

I do want to touch on some of the comments though and give my two cents, if possible.

Although I rarely think about what Kevin was like in the past, I don't ever want to totally forget who he was for the first 19 years of his life. To be honest, he is still mostly the same person - but vital parts of him are gone and I don't agree that I should not remember what was our past. I do agree that I shouldn't dwell on it though and I don't feel that I have ever done that for any length of time. A couple of days here and there - yeah, sure. I think that's acceptable.

I also don't agree that I am depressed. I think I have hit a rough spot, but that doesn't mean I am depressed. To me, depression is something that happens over weeks or months. It doesn't happen when you fly to another state and feel things differently. Maybe I am wrong though - do any of you feel that my previous posts sounded depressed? I am always open to being wrong (did I just say that out loud?).

As for the person that wrote that Kevin sees what's going on around him but must know he is a hero - there is the problem. Kevin doesn't even understand that word. All Kevin is seeing right now is what he has lost. He has no comprehension of how he lost it or why. I have discussed it with him, but he truly doesn't understand it. It would make all of this so much easier if he could comprehend what has actually happened to him.

Cathy M - I do agree that each visit will probably get easier. It's just like Kevin looking in the mirror and crying for the first how many times. Now he looks and just hams it up for himself. Next month will probably be much easier.

And to be honest - today was even a better day than yesterday. He still wants to go home, but he seemed to have a good time at PT with Pam and the guys in the gym. Pam? Will you PLEASE PLEASE come home with us? Kevin responds to you so well!

Jessica - fake it till you make it has always been my motto. And it works most of the time. That's how I have gotten through even the toughest of the last year, but no matter what - I am going to just have days where I just can't fake it.

Barbara B - I am about 1/3 of the way through My Stroke of Insight. I just can't find it since we moved, lol. It will show up eventually.

With also brings me to The Shack. I haven't seen it yet either, Janna. It's gotta be in a box somewhere...

And Barbara you also mentioned me writing a book. Many people have mentioned it and believe me - there is SO MUCH that I just don't share here - but I would have no idea on how to go about getting it published or anything like that. And frankly, I'm not sure I have the intelligence either. I will say this we are moving into the one year mark, I do plan to 'remember' things and document them here. I can't remember what I wrote in the beginning, but I do remember how I felt. I want to put that to paper (ok - the black void called webspace) for Kevin to read about in the future.

And as for me getting a degree or going back to work - there is just no time now. Kevin is A LOT (underlined 17 times) of work. I don't usually even get to sit down for 5 minutes a day and when I do - I need to stay sitting because I am so on the verge of just dropping. This also goes along with the few emails I got telling me to start my own business. Contrary to popular belief - you have to work REALLY hard to succeed when you are self employed. I could never do that with Kevin how he is now.

And to the anonymous poster who told me to head on down to the Drop Zone and toss back a few? I'll meet you there!!! HAHA. Seriously - if I sat down and started drinking I would either A) fall off the barstool like a drunken idiot after just 1 drink or B) start crying and never stop. And I should also mention that Kevin and I went there for breakfast on Wed, but the gang had already left. I was so disappointed.

As for me filing for disability - I am still considered 'workable'. I think that blows the Medicaid out of the water too, doesn't it?

To Amy Grace - you mentioned us learning American Sign Language. I still haven't checked into it, but I plan to as soon as I have a few minutes. I am intrigued, to say the least.

Jodi - it was so wonderful to talk to you today - even if I did 'butt dial' you, lol. Between you and then Kevin and I having lunch with Janet (it was so great to see you again, Janet!!), things started feeling better. And then when we came home and I read the comments I realized that I needed to kick my attitude back into place.

So here I am. Back to feeling better. Or almost anyway...


Kevin and Natali McKee said...

You are going through a roller coaster of emotions. I hate that you have to explain yourself every time you vent and express your negative emotions. You are human and you are going through SO much right now. Just let it all out.

Anonymous said...

girl!! you feel however the hell you want to!!!! this is your blog....just let it out!!!


Anonymous said...

It does not sound like you are depressed. It sounds like you are WEARY. You should be weary with all you have gone through and know you will continue to go through. Thank God I have not gone through what you have but have had slightly similar circumstances of taking care of a loved one under great physical, emotional and financial challenges. I like to think of a song that says something like- If you are going through hell, keep on going, don't look back, and if you fall, pick yourself up- but keep on going before the devil even knows you're there. Good luck! So many people are with you and Kevin in spirit.

Jessica said...

Leslie, Did you try and get disability for Kevin? My son is deaf and I can collect disabilty for him, even though I work...maybe something to look into. Also, because he is deaf, we have learned sign language. It's not as overwhelming as learning a whole new language because neither of you know it, SO... you would each learn at your own pace and start with the day to day things you would need to talk about. I still don't sign in sentences, but my son is 2, and doesn't talk in senteneces :-) It's challenging, but a lot of fun! If you want any infomation, I would be glad to help you in any way I can.

As far as depression...hmmm...NO, I don't think you are depressed. You are in a tough spot right now with everything, it's ok to get down, just don't stay there. You are an amazing women and I love keeping up with you all. I am blessed by each one of you! thanks


humminbirdie said...

I think you are doing remarkably well. And I do not believe you are depressed. We ALL have days where we bury our heads and sink into a day of, life stinks, and what ifs! A day of two of self pity, I believe is good for the soul. I, myself, endulge on those occassionally! It's the individuals that are unable to shake it off, and hey Ive been there too, after a day or so that may need to look elsewhere for some outside help. Everything you are feeling and Kevin is feeling is completely normal. Kevin, more than likely is having the anxiety that comes with having his routine changed. And that also is normal.
Change is inevitable but that doesn't mean we always face it gracefully!

I do believe however, these posts will someday, somehow, be read by some great publisher who will be able to collect all your thoughts and fears and conquests and organize them into a beautiful, educational peace of work that can and will educate others. My oldest son is graduating next month, and has been interviewing with recruiters. But for him to make a completely informed choice on his future, I've felt it's vital for him to be reading these posts. This is not to say I'm advocating to not serve or to serve, but to make certain he has enough information on any and all outcomes of his choice for his future. :)

I appreciate the posts of your joy as much as the posts of realism where you share your deepest and most difficult times. It takes a brave soul to be able to let us all in.


Kris said...

Leslie, YOU ROCK. God bless you. And as always, sending thoughts, prayers, support and loads of extra special Angel Hugs your way.

- Kris, a Soldiers' Angel from RI

Alison said...

Learning ASL might help you guys communicate better - and there is ALWAYS a need for people to translate for the deaf, so you could even do yourself a favor and learn/study and then perhaps put it to use somehow in the future...just a thought.

I know I haven't commented in awhile but that's because I started a new job that's tiring, but I'm always reading and thinking of you guys. Hope things continue to improve as we near a year since all this started.

Anonymous said...

Three points.

ONE: You aren't depressed. But that doesn't mean you couldn't benefit from some of the services for the depressed. I'm not talking about the meds, but perhaps your own counselor for your own feelings. Or a support group. Of course, you have no money or time for either, I'm sure. I guess this blog and it's community of readers are your counselors and support group.

Don't worry when you get responses of unwelcome advice (like this comment.) People who care often tell others what to do. When all you're doing is getting your feelings off your chest. And you don't need any advice at all.

TWO: I'm getting PT from a former VA employee. He says the VA system in the NW is a mess from the top down. His frustration with how poorly the NW region is run makes me wonder about the entire system.

So, you're fighting many battles on many fronts and doing marvelously well.

THREE: I've taken ASL classes. It was really really fun and far more expressive (even to the beginner) than any spoken language. (I've studied three.)

However, I have a high IQ and have always been an A student but I pretty much SUCKED at learning ASL. I could learn the motions and symbols but I just couldn't read them! And I think that's because it was using a visual part of my brain where I wasn't so smart. And that might be just the spot where Kevin has abilities that can grow. It can't hurt, I would think. You can always drop it if you don't like it. (More unwelcome advice).

Hang in there. You're amazing. And so is Kevin.

Long-time RN said...

I'll throw in my two cents here.
I think your readers care a bunch about your family, which is probably an obvious statement. Folks offer advice from the heart in response, and that's a part of blogging which is inevitable. Maybe I'm speaking out of turn here, but we all wish we could help in some way. However, there must be times when nothing seems a comfort or help to you. You've done an incredible job over these past months.

One thing that always comes through is your strength and perseverance. Of course there will be a roller coaster of emotions. What you've experienced for almost a year now is a world turned upside down and inside out. Keep venting and as trite as it may sound, hang tough.

Big (((Hug))) and prayers.

Anonymous said...

When do you guys get to go home to Florida? Such small cramped, dark conditions is not healthy for your mind, emotions or your body.

I am so happy to read so many people supporting you. Know all of you are in many of our prayers.

Lisa Damrosch said...

You don't sound depressed to me, you sound human.