Monday, May 28, 2018

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...

18 comments:

Miss Em said...

Leslie...

My heart is crying out against this most painful and helplessness reality in Kevin's life.
It appears that the VA hasn't changed their tactics at all.
When this happened, the VA put Kevin in a "box" and began the process of ignoring the problem so it will go away "as in dieing". Unfortunately for them they don't understand Kevin's desire to live or his mama's bulldog tenacity.
I can't tell you to let Kevin go as he's asking you to but even when he's trying to commit suicide he's still reaching out to you for help knowing that you will do everything you can to stop what he's trying to do.

Kevin in all of his pain knows that you're fighting for him. That you're doing everything you can to help him find his happy place again. Don't stop looking for that one person who knows how to do what must be done to make Kevin's life enjoyable again.

In the mean time, reach out to those who supported you when Kevin first got hurt.
We did what we could to help you then and we'll do what we can to help you now.
Talk to us...
Yell at us when the frustrations become nearly unbearable...

You're cry for help and support has been heard and we are gathering to help lift your drooping wings.
We may not be Angels but we are friends who care and desire to be a shoulder to lean on.

Prayers for you and Kevin that an Angel will guide you to what Kevin needs.

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C. Eliza said...

I used to read your blog regularly and randomly thought of it just now. I’m devastated to read your update. I’m so so sorry. This country has failed you and I wish there was something I could do help.

Bradley Toy said...

Leslie,

I don't know if you remember me or not, but your mentorship helped me develop into the person that I am today. In the early days of the internet, a small group of like-minded individuals chatted, emailed, and shared website tips together. I don't remember how we met, maybe it was through the internet service provided by Apollo Trust, or maybe it was through NB.net. For some reason you popped into my mind recently, so I Googled your name and found the story about your son.

I'm so sorry about what happened, I know there are no words that would be enough to help. I will pray for peace for you, your son, and your family.

Peace and Love,
Bradley Toy

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