Mystery Lane

Mystery Lane

Friday, July 13, 2012

Letting Go

It seems like forever since I have been able to sit down and write.  My heart and mind just aren’t in the right place at the moment.  I’ve been struggling internally and I know I am not dealing with things very well.  I suppose that is why I haven’t felt like sitting down and writing on my blog.  Putting my thoughts down and sharing them sometimes is a little overwhelming to me.  But when I started my blog I promised myself that I would share those uncomfortable things because maybe, just maybe, it might help someone else who was reading my blog.  I didn’t realize though that my blog would become so personal and in the course of writing it I would lose my parents.  Life surely is nowhere near what I thought it might be.  And I hate that!

I am no stranger to grief.  I grieved the loss of 2 friends in high school, one the year after high school, my mom when I was 26, and grandparents through the years.  But losing my Dad was the worst.  Now my step-mom Sandy is gone too.  When my Mom and Dad died I wished so badly that I was able to say goodbye, that I had more time with them.  I got both those things with Sandy.  Oddly, it didn’t make it easier.  I think it was actually worse because having more time meant that I had to watch Sandy die.  Anyone who is familiar with Lou Gehrig’s disease knows that it is a cruel, nasty, unforgiving disease.  Watching her deteriorate robbed me of so many memories I had of her.  They were replaced with the memories of her dying.  Grieving for Sandy is now mixed in with grieving for Dad.  But the one thing that has helped me is that knowing they are together again, somewhere out there.  If I close my eyes I can hear them resuming their old arguments and being ornery to each other again.  I like thinking about that.  Anyone who knew Dad and Sandy knew their M.O. was banter and arguing.  26 years of it made quite the entertainment for a lot of us.  If I just focus on that the tears seem to subside.  For the last month I have just been living on the edge of a crying fest.  Frankly, I don’t have time for that so I just push it aside.  I am starting to realize that is not a good thing.  But how do I take care of my little boy when I am a mess?  And speaking of my little boy….

It’s been a tough couple of weeks with him.  He of course caught a cold right before we left for our two week vacation to Florida.  He managed to shake it fairly quickly but of course Mommy and Daddy caught it too.  Once we got past that he had a few fussy days.  One thing that did cure those fussy moments was Grandma and Grandpa’s pool, the ocean and walks on the beach.  Oh how he loves walks on the beach and the salty water of the ocean.  It is so funny to watch him lick his lips while in the ocean.  You would think he had chocolate lips they way he giggles and smiles.  Once we got home he started having fussy days.  He wasn’t our typical happy boy anymore.  I thought maybe it was because we were out of our routine of going to school.  But now I am thinking maybe something is hurting him again.  That is most frustrating thing.  He can’t communicate, I am not a mind reader, we have no way to communicate.  I just want to scream.  I hate that he is hurting, I hate that he is crying, I hate that I have no clue what to do.  It just adds to that grief of not having a “normal” kid.  I want my kid to be able to tell me what is wrong.  Just say “Mom my tummy hurts” or “Mom my head hurts”.  It doesn’t seem like it is a lot to ask but apparently if falls along the line of having George Clooney be my pool boy (if I had a pool).  This of course sends me into the whole “why my kid?” questioning routine.  Let me just say this – I am sitting here at Starbucks writing this post.  There are 2 boys at a table nearby with their mom.  They are probably about 9 or 10ish.  They are just chatting and laughing and happy.  It gives me tears in my eyes to watch them.  Does this woman know how incredibly lucky she is?  She can sit in Starbucks and talk to her little boy.  He can tell her what he is thinking and she gets to hear it!  I’m probably never going to have that.  And I wonder why she is so lucky and I’m not.  I wonder what I did that was so bad in my life that my little boy was born with brain damage.  I mostly wonder when I will ever get over not getting the little boy I dreamed I would.  My guess is never. 

The hardest part of everything that is going on in my life is the fact that I am struggling with it.  I have always been a pretty strong, resilient person so it is difficult for me to struggle.  I feel weak and helpless and I really, really don’t like that feeling.  I want my strong self back.  The funny thing is that I am starting to realize that what made me so strong was that I had my Dad to lean on.  He always made me feel like I could and would get past anything.  I don’t have that reassurance anymore.  My crutch is gone and I have fallen down.  Somehow, sometime I am going to have to stand on my own two feet.  I miss my crutch. 

Last week I went to counseling for the first time.  The grief of Dad, Sandy and Jackson is taking a toll.  I’m not sure if it will help me but I’m sure it can’t hurt.  Of all the counselors to go to mine just happens to have a child with special needs too.  That was comforting to know.  It really helps to have someone in my life who can understand what I am going through.  Really understand.  I have so many friends who try but unless you have a child with special needs you just don’t really know.  Maybe having someone who has walking in shoes similar to mine will be able to help me.  In the meantime I need to learn how to let go.  I need to let go of Dad and Sandy.  I need to let go of the fact that Jackson isn’t who I thought he was going to be.  I need to let go of the life I thought I was going to have.  I just don’t know how to.  Yet more lessons to learn on this journey called life.  Being a teacher you would think I love to learn.  However, this course is one I wish I could skip. 

“We must be willing to let go of the life we have planned so as to have the life that is waiting for us.”  Joseph Campbell


  1. Stacey, we're each not strong all the time, but your strength, beauty, and courage shine through in your writing. Even here when professing your weaknesses. Jackson could not have a better mom. I'm glad for you that you had good parents, including your great dad, who--even though he's no longer with us physically--will always be giving you his strength as he is now. And of course you also have it from your honorable husband, too. Even though I don't see you, Kevin, and Jackson as I once did, reading Mystery and your honesty is a source of strength to me. In life that isn't fair nor easy, you set a high standard for courage, honesty, and love for others like me to strive for and emulate. Love you, Stacey!

    --Steve Reynolds

  2. Stacey,
    My mother in law passed in 2004 from ALS it was a horrible way to go and I understand that loss. I also have a son who is 11 years old with bilateral persylvania PMG. He too is non verbal but understands a lot. When he was about 5 or 6 we took a functional sign language course and taught Mason a few signs. WOW what a difference it made. His frustration dropped 75% just being able to say mom, dad, more, all done and thank you! We can't do American sign language because he doesn't have full use of his fingers but we have adapted some signs and others can mean several things we just have to be aware of the context of what we are talking about. I completely understand the feelings you talk of and reading your blog brought back a lot of my own old feelings of frustration with understanding my son. He now knows a least 50 functional signs and uses a communication device in school. It's a lot like charades around our house. Please don't hesitate to contact me and I will share with you anything you want to know! Stacy -