Mystery Lane

Mystery Lane

Monday, January 30, 2012

Snapping Out of It

I think I am finally snapping out of my sad funk.  What I’ve come to realize the last couple of weeks is that I’m not going to ever be immune to these little funks.  As a special needs parent you come to live a life that is tinged by grief.  Well most of us do anyway.  There are some truly spectacular people (my husband is one of them) who never wish their child was “normal”.  They just amazingly accept the fact that their child has a disability and never look back.  I try hard to be that person but I just can’t get there.  There is always going to be a small part of me that will occasionally wish Jackson’s brain was fully developed.  With that comes the whole “I can’t do this, I can’t be a special needs parent, it’s too hard.” funk.  Throw in the fact that I miss my Dad more than I can ever say and down the spiral I go.  The real problem is how I deal with all this.  I know it is going to be a part of my life from now on.  What do I do about that?
Last weekend I had a date with my husband.  During dinner we were discussing how differently we view having a special needs kid.  Kevin told me about a quote he had recently read that was something to the effect that life isn’t about waiting for storms to pass it’s about learning to dance through them.  It was the perfect time for that quote to come along.  It got me thinking about my ability to dance through these storms that lie ahead, and how well I will dance through them.  Am I the weak, crumble at every crisis type or am I the pick myself up and move on type?  Or am I a little bit of both?  Most of my life I have been the pick myself up and move on girl.  But having a child changes your perspective.  And having a special needs child just plain changes how you look at life and live it.  When something happens to me, I can deal with that.  When something happens to my beautiful little boy, well that is a different story.  I guess in the end my ability to dance will be a crapshoot.  How well I dance is going to depend on my ability to accept this life my little boy has in store for me.  Either way I want to dance, and dance like nobody’s business. 
With that I leave you with a quote by Dan Zadra:  “Always know in your heart that you are far bigger than anything that can happen to you.” 

Sunday, January 22, 2012

Daddy's Little Girl

I haven’t written a post in a while.  The truth is I’ve been sad lately, really sad.  I’ve been struggling with the fact that I don’t feel like I’m a good mom or wife.  I fear my frustration, lack of patience and general unhappiness is reflecting on my ability to be a good mom and wife.  I have become this person I don’t want to be.  I can’t figure out what happened to me.  A few years ago I had a teaching job I loved, I climbed a lot, I read book after book, I took long walks, I had free time to waste.  Now my life consists of therapy appointments, doctor appointments, poop filled diapers, laundry, and feeding times.  My reading consists of medical studies, the latest therapeutic methods, books on brain injured children and motor skills.  I haven’t climbed in I don’t know how long.  I have the hardest job I have ever had and I don’t get paid a lick for it.  I miss my old life.  I miss the days when the idea of a child was a little boy wearing a miniature toolbelt following my husband around the yard as they “fixed stuff”.  The reality of our child is hard.  Too hard for me sometimes.  I have so many fears about him.  I worry who will take care of him when he is older.  I worry he won’t get older.  I worry about how much longer I can carry him around.  I worry about what will happen if I can’t carry him around.  I worry that I am not the kind of mom Jackson needs.   I worry that I’m not cut out for this.  I worry that I am so incredibly selfish because I miss my carefree life that I won’t be the mommy Jackson deserves or the wife that Kevin does. 

All my life if I’ve ever had a problem that seemed too much for me all I had to do was call my Dad and he helped me through it.  My Dad died almost two years ago.  I really need him right now.  I need to hear his voice and I need him to tell me that I can do this.  What happens when that one person you need isn’t there anymore?  How do you get through the seemingly impossible stuff?  I feel like a fish flopping around on a deserted beach.  You see, I know my Dad would have the perfect answer for me.  My mom left when I was in 3rd grade and it was just my Dad and I for the next 5 years.  He raised me by himself.  I never asked him what that was like for him.  But I have a feeling he might have felt the same way I do right now.  I’ll never know though, and I have no idea how to get through this without him.  I guess being Daddy’s little girl for all these years is finally biting me in the ass.  The days of relying on Dad to help me through tough times is past.  I’ve got to figure out how to get back in the water by myself and quite frankly I don’t want to.

I love Jackson so much it hurts, it really physically hurts.  And I know for a fact that there is not a better man out there than Kevin.  I don’t deserve either one of them.  Funny lady Carol Burnett once said “You have to have faith that there is a reason you go through certain things.  I can’t say I am glad to go through pain, but in a way one must, in order to gain courage and really feel joy.”  I hope that I can get through this tough time in my life so that I can gain some courage and feel joy.  I really could use some of both right now. 

Sunday, January 8, 2012

Happy New Year

I’m not real big fan of the New Year celebration.  I’d rather stay home than be on the road with a bunch of drunks.  I’m usually in bed before midnight (this year I made it to 10:30 p.m.).  I didn’t even realize it was New Year’s Eve until about 3 p.m. this year.  I’m also not a big resolution person either.  I have good intentions (don’t we all) but I never follow through with these resolutions so I have kind of given up on them.  Maybe it’s because Jackson was so sick in December and it was a really difficult time for me, but for whatever reason I feel kind of introspective about 2012.  There are things I decided that I am going to focus on this year.  I say focus because they may or may not be achieved.  I don’t want to get my hopes up and then have them crushed (I still have a love/hate relationship with hope).  So focus it is.  Here are my focus items:

1. Jackson walking.  I really want Jackson to walk.  More than I want to hear “I love you Mommy” come out of his mouth.  I want him to experience getting to move from one place to the next all by himself.  I want him to see the world upright.  I don’t want him to spend his life in a chair.   I can’t make Jackson walk and this focus may be one I have for the next 5 years.  What I can do is work harder to help him walk.  I can stop carrying him around.  I can start making him stand up for long periods every day.  I can get him a stander (if my good buddies at Molina Healthcare help me out).  I can make him “walk” around the house to get from the floor to the bath, or to bed, or to his highchair.  I can read these books I bought about motor control and how to implement it in my disabled son.  He may not like it, my back surely isn’t going to like it, but I have to do all I can to help my boy walk.  So I will.

2. Jackson communicating.  We have the iPad.  The school downloaded the $200 communication program (Proloquo2Go) for us.  I need to learn how to use it, then I need to teach Jackson how to use it.  I kind of feel like Jackson isn’t ready for it.  But I have underestimated my kid before so I am just going to give it my all.  Maybe he isn’t ready, but maybe he is.  I would rather try than not.  Anything that would allow Jackson to be able to express his wants and needs is something that should be a huge focus for me.

3. Yoga.  This one’s for me.  I love yoga.  I really, really love it.  I haven’t done it since I was pregnant with Jackson.  I miss it.  I miss having a relaxed, stretched body.  My body is starting to feel the effects of carrying Jackson around all day.  I need to get my body back to a happy place.  I have no self discipline to do it at home so I need to find an affordable class and someone to watch the kids.  I will find a way!  I will focus on Yoga! 

Henry David Thoreau said: "It is reasonable that a man should be something worthier at the end of the year than he was at the beginning."  I think so too Henry.  Hopefully I will be.