Mystery Lane

Mystery Lane

Wednesday, June 27, 2012


For the last few months I have shared with you my journey with my stepmom Sandy who has ALS (aka Lou Gehrig’s disease).  Since Sandy’s diagnosis I knew the inevitable end would be her death.  As the disease progressed I made it a priority to go see her every month.  I wanted to make sure I had spent as much time with her as I could.  I am so thankful I was able to do that.  During my visit to see her in April I was able to say goodbye to her.  I won’t forget it.  I never got to say to goodbye to my Mom or Dad.  Being able to share my feelings and tell Sandy thank you for raising me and loving me like a daughter was really important to me.  In May I took Jackson down to see her with me.  She was able to see Jackson one last time.  My June trip was planned for the end of this month on the way home from our Florida vacation and both Jackson and Kevin would be with me.  But Sandy’s ALS had other plans.  The day before we left for Florida I got the call I knew would eventually come.  ALS had claimed another victim, Sandy.  She died in her sleep.  I’m thankful for that.  Even though I knew it would happen, it wasn’t any easier.  It still hit me like a ton of bricks.  I’m still trying to work through the grief of my Dad and now Sandy is gone too.  My only consolation is that they are together again.  We still plan to stop in Denver on the way home and I am dreading it.  I know once I get there it will really hit me.  I won’t be going to her apartment, I won’t be taking her to see a movie, and I won’t be stopping by McDonald’s to pick up a cheeseburger for her.  As much as I hated watching her die, I am going to miss my trips to see her terribly.  And regardless of the fact that so much of who Sandy was had already died before she did, I am going to miss seeing her so much.
For Sandy, Dad and Mom:
The Rainbow comes and goes,
And lovely is the Rose,
The Moon doth with delight
Look round her when the heavens are bare,
Waters on a starry night
Are beautiful and fair;
The sunshine is a glorious birth;
But yet I know, where’er I go,
That there hath past away a glory from the earth.

Friday, June 8, 2012

Stop the Fit Throwing!

Recently I learned a lesson from a disabled 8 year old boy whom I’ve never met.  I read about him in a magazine.  He said his motto was “You get what you get and you don’t throw a fit.”  What a genius!  Seriously, that little statement has resonated with me all week.
As a special needs parent I feel like throwing fits all the time.  When Jackson opens his hand nice and wide as I am putting his arm through the sleeve and I can’t get it over his hand.  When I am changing his poopy diaper and he kicks his leg and gets poop everywhere, especially on me.  When I am trying to put him in his car seat and he thinks it is a fun game to fight me on it.  Just writing about these examples makes me want to throw a fit!  But what really makes me want to throw a fit is when I start throwing the impending doom question of “Why my kid?” out there. 
“Why my kid?” begins a spiral of grief, anger, sadness and frustration that quite frankly I hate.  I hate it not only because of how it makes me feel but also because it is such a waste of time and energy.  It’s a dark hole to enter into and once you get down there it takes a while to come back up.  I know in my heart that there is no point in it, but inevitably the time will come where I begin thinking “Why my kid?”  As it approaches I want to throw myself on the floor, kick my legs, throw my arms around and scream “go away!”  But it doesn’t.  The unwelcome visitor comes anyway.  In the beginning after Jackson’s diagnosis I just kind of let it be.  I figured it was part of the process I was going to have to go through.  As time went on, I kept thinking it was going to go away.  Now almost 3 years after the diagnosis I am beginning to understand that this is just how things are going to be for me.  I am always going to have these moments, whether I want them or not.  Moments where I would give anything to have my kid talk back to me, to see him walk around our house, to hear him say “I love you Mommy”, and to see him work in the yard with his Daddy.  Moments where I wonder about what might have been.  Some people may feel that I have these issues because I don’t accept who Jackson is.  I disagree.  I accept who Jackson is, but as a parent I think we all want more for our children.  I want more for Jackson.  I want him to experience the life of a normal child.  Who wouldn’t want that for their child?  Right around that line of questioning is when I start coming out of the hole I just dug for myself.  Why?  Because I start wondering why that is so important.  Why is it so important that Jackson experience all the normal things?  What is normal anyway?  Imagine how boring life would be if we were all the same and experiencing all the same things! 
Being a parent with a special needs kiddo teaches you a lot of lessons.  Most of them we won’t share because we are special and unless you are in our group we just don’t have the time to explain them to you normal folk.  One I will share is that normal is way overrated.  Another lesson is that we take every minuscule opportunity to appreciate joy.  Like the other day driving Jackson home from school.  As we drove away from school he was making a ton of babbling sounds.  He was telling me about his day in his own way.  Then he started laughing.  I started laughing.  We were both laughing.  I could barely drive from all the laughter.  It was awesome!  It was joyful.  Who cares that I had no clue what Jackson thought was so funny.  Mommy and Jackson sharing a laugh set a joyful tone for the rest of our day.  Or how about last weekend when we went out on my nephew’s boat and as soon as Jackson saw the boat he got crazy excited.  He was so happy and content to sit in the seat and troll around the lake all afternoon.  It was such a joyous day!  One I know I will always remember.  Little bits of joy here and there keep me going.  Sometimes all it takes is seeing Jackson sit up on his own for more than 5 minutes.  That’s pure joy because it took him 4 years to do it!  Coming out of the hole always reminds me how silly it is to go down that hole.  Jackson is awesome.  He’s quirky, a master manipulator, extremely handsome, loves to be loved on, thinks wind is the coolest thing ever, loves being in the water, thinks the vacuum is hilarious, and doesn’t have a clue that he isn’t “normal”, or maybe he does and he just doesn’t care.  Apparently Mommy is the only one with that issue.  But I am going to steal that little boys’ motto and start living my life knowing “You get what you get and you don’t throw a fit.”