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Saturday, May 7

Wondering what will be

Sorry once again for the lack of writing; I have felt slightly uninspired, slightly more relaxed, and definitely trying to stay away from the computer.  It seems that my life had spiraled out of control for a few months and I have spent the last three weeks taking a reprieve from all the chaos that exists outside of my family. Not to mention that Connor has decided to become a typical two year old and can throw some tantrums that, frankly, make me want to run and hide.  Realizing that this is not an option, I try to remember my many years of college and classes in behavior modification that seem to complete disappear from my mind when dealing with my own son. Why is it that I can handle an entire room full of children and make them obey and yet my own son sits in the living room shouting nooooooo and bringing on wails of disobedient rambles.  Mackenzie never had the terrible twos, I had hoped that Connor would have surpassed this as well but it seems not the case. Fortunately for me, I am much more stubborn than he and will win this battle .  I think it is from such an exhausting trip to visit my in laws.  Yes I decided to take a week and drive to visit my husband's family.  My dad let me take his amazing conversion van on a test drive for a weeks worth of driving.  I made it there in 18 hours and we drove straight through just me Kenzie and Connor.  Jason had to work and also was able to refinish our floors and paint Kenzie's room.  Overall my children made the 41 hours in a car within the week with amazing decorum.  I think the exhaustion kicked in when we made it home but what a wonderful trip.  Visiting my mother in law always lifts my spirit.  It is like spending a week with my best friend and I always hate leaving.  She has become such the voice in my head and I am blessed to have such a wonderful relationship with her. 

The weirdest part of the trip was the change in my mother in such a short time.  We are definitely seeing her progress even faster than before.  We are cursed and blessed that she still understands what is going on.  I fear that she will still be aware when she become bed ridden.  I hate the thought of her understanding that she is no longer free but stuck to a bed.  It does not seem too far off and that scares me.  I have been going up a lot the past week or two, just surprising her with visits and it is amazing to see her face light up with joy. 

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She rarely is happy now so I cherish the moments when she is. She is still aware of my children and wants to play with them.  She just does not know how.  Connor seems to be unaware of it and still likes to play chase with her.  She tries to run after him, but stops mid way like she forgets how to play chase. This other video was taken a few days before I went on my mini vacation.  She did the same thing the other day, just stops in mid action

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She also is having such a difficult time speaking.  Here are two videos, the first is her the day I got home and she is speaking so well.  I cherished that night because she was so full of praise and love towards me.  The second was Tuesday night of this week.  It is amazing how little she was able to speak or take her medicine. videoThe first one she was pretending not to remember me since I was gone for so long.. The second she was talking about the fact that she was afraid I would get hurt in the new van and that my brother did not watch two nights of movies (instead he was over almost every day and slept over one night...she was hung on the two nights of movies lol)The third video she is making me take money out of her drawer which I put back immediately after but isn't it amazing how she can process these things. video video
Now here is one from this week where she is trying to take her pill
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and one final one from the week before we left.  I put on high school musical and she started to dance with Kenzie.  videoThere are moments when she is so aware so able to process everything around her and then in an instant it disappears.  She becomes zombie mom and is totally oblivious to her world.  She gets confused and tired.  Through it all though, she is with us and is able to express her feelings and how this disease is affecting her.  She mentioned tonight how far away she feels.  It is like she wants to do things but she is so scared.  Everything scares her, walking scares her, stepping over things scare her, the shower scares her.  She is afraid of the doors, of certain noises.  She told me tonight how she hates feeling scared because she was never afraid.  She hates feeling pain, being nervous, and basically her life.  She is trapped in her bed and in her room watching movies not because she likes them but because she is safe and her mind makes her.  She is tired of watching the same movies but her mind won't let her change them.  She is able to express all this too me.  She also asked me about my surgery (prolapsed everything and adenomyosis) and when I was getting my genetic test for alz.  I mentioned that surgery is on hold for now and I am looking at joining some researchers in testing for alz because it is cheaper than doing the test myself.  I am amazed at my mom and am so proud of her for the way she is handling this disease.  God truly left us with an unbelievable mother.

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