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Good Days and Bad Days

Posted Oct 25 2012 11:25pm
I started this post over a week and a half ago.  I've been having technical - along with emotional difficulties!

Like anyone else, we have good days and bad days.  And I'm SO grateful for the good days.  And sometimes, I'm grateful for the bad days too because it makes me appreciate the good days all that much more.  I started getting in a funk about two weeks ago.  There were multiple things going on and I started to just feel overwhelmed.  It happens.  Having a child with special needs is a very cyclical thing.  There are times when you are happy, times when you are sad and times when you grieve.  It's not just a one time event.  And it's not something you can plan for, it happens when you can least expect it.  Two weeks ago we were having dinner and out of the blue Zach asked Aaron and I if Sissy was going to live with us forever, or if she was going to have to live someplace with other "special people like her".  That's a thought that lives way in the back of my mind and a place I simply cannot visit too often.  I CAN'T imagine Alex not living in our house and sleeping down the hall from me.  But in reality, in the far future, it may be something that we have to think about and plan for.  But I just cannot go there.  It literally brings me to tears.  Zach then proceeded to tell us that he would take care of her and that we didn't need to worry about her when we were 'old'.  We then had to tell him that it wasn't his responsibility to take care of his sister, that he was going to have his own life and Mommy and Daddy would make sure that Sissy was always well taken care of.  First of all, his compassion kills me.  Secondly, it breaks my heart that he actually thinks of these things, that he doesn't have the typical brother/sister relationship with her and has to think that Alex will be his responsibility.  He's EIGHT for heaven's sake.  We did tell him that we know he will always be there for her, and that IF she did have to go live somewhere else we knew he would visit her and love her the way he does now.  So my mood was even more dampened.
That Saturday we had a birthday party to go to for my friends daughter who was turning 6.  Honestly, I dread birthday parties.  Once again it makes me feel a little bad and I dread how kids who don't know Alex will respond to her.  But, I adore my friend so we went.  And when we got there (late, as usual), the dreaded stares started.  I try to smile at the kids and tell them Alex's name but they stare even longer - and I know it shouldn't - but it BUGS me.  So I'm already in a funk and I just start to feel worse.  There was a bouncy house at the party and Alex kept staring at it.  All of the kids got out to go play a game so I got her out of her wheel chair and had Aaron hand her to me - and we bounced.  And she laughed - and she loved it!  (I will say it was QUITE a workout for me!!)  A few minutes later all the kids came rushing back to the bouncy house so we had to get out - but we had to stop all the kids from rushing in so we could actually get out, so once again, all of the kids are just staring at us getting her out and trying to put her back in her chair.  Once Alex was back in her chair she kept staring at the bouncy house.  It was time for another game and all of the kids came happily yelling out of the bouncy house and ran over to the pinata and Alex was following their every move with her eyes.  It's moments like that that I wish I could get inside her head - just for one minute to see what she's thinking/feeling.  And again, I feel that grieving pang.  I would have given anything in the world at that moment for her to be able to squeal and run with the other kids to the next adventure.
My friend's grandmother was there and she came over and started talking to Alex.  And she was SO sweet and kind.  She was talking to Alex - not expecting an answer, but just really talking to her.  She was asking her for high fives.  She was telling us how beautiful she was.  She asked us questions about her.  There were several times during the party she would come over and kiss her.  She completely warmed my heart.  It was obvious that Alex had touched her.  And that is one incredible gift Alex has.  When it was time to go, I gave her a hug and thanked her for being so kind and she cried.  And it was genuine.  When we got home, we got the kids settled and Aaron was in the garage and I went and sat on the back porch and all of a sudden I started crying.  It was a good, long, hard cry.  I wasn't crying for one thing in particular, but when I was done, I felt so much better.  It was like it was a massive release. 
The next day was Sunday.  We were all out in the driveway and Zach was practicing his cursive writing with chalk on the driveway.  He took a break and went to the mailbox - I was about to tell him there's no mail on Sunday when he took a bunch a mail out of the mailbox and then I realized I hadn't checked the mail in two days...whoops.  He started saying something about there being no name on something (he's always hoping for mail with his name on it - perhaps I should change one of our bills to his name?!?) and I thought it was an advertisement of some sort.  When he brought it to me I was shocked to see that someone had anonymously left a gift card in our mailbox.  I was so touched that someone had obviously been thinking about us enough to do something so kind.  And again, I was reminded of what special gifts Alex has.  So if our anonymous donor reads my blog, you have no idea how your act of kindness touched me at moment that I needed most.  Moral of that story - if someone you know is on your heart - will you call them?  Send them an e-mail?  Drop by for a visit?  There's a reason why they're on your heart or mind.  You have no idea what hearing from you might do for their day.
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