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.
First 2 from the Nov kit!
1 year ago