Reprieve

It’s been a difficult summer with Jackson.  His boredom and not getting what he wants manifests into fit after fit after fit.  Just when it seemed I was about to lose it, I got a reprieve in the form of a road trip.  The idea of 8 days in the car with a 4 year old may not seem wonderful to most people, but to us it was heaven.

My Grandma turned 90 last week and the party to celebrate her major milestone was in her hometown of Wheatland, Wyoming.  We decided we would drive there and make a vacation of it.  Lucky for us Yellowstone and the Grand Tetons just happened to be on the driving route.  The days leading up to our departure were filled with Jackson screaming and tantrums.  For a brief period I thought maybe something was wrong with him medically.  But I ruled that out based on the fact that he would change his behavior when he was getting something he wanted.  A few times I just put him in the car and drove around, which quickly stopped his fits and put him in a good mood.  I think in his mind he thought he was going somewhere, doing something, and that made him happy.  I had a feeling that our trip to Grandma’s house would make him happy, but I had no clue how happy. 

The first day of our trip was about an 8 hour drive to Gardiner, Montana.  I was hopeful Jackson would do well for 4 hours.  Surprisingly the kid was joyful, making happy noises, laughing and entertaining himself for the whole drive!  We stopped every 2.5 hours or so to let him roll around and eat and have a break from the car seat.  By the time we got to Gardiner he was as happy as he was when we left that morning.  He even tolerated us putting him back in the car after setting up camp and eating dinner so we could spend some of the evening in Yellowstone.  It was amazing!  Kevin and I thought for sure our luck would run out the next day.  Nope.  It was a long day in Yellowstone, in and out of the car to see the sights, and it was ridiculously hot.  But Jackson was a trooper, he continued on with his happiness.  Third day on the road, same thing.  Arrived at Grandma’s where we spent 2 days, happy as could be.  Headed to the Tetons, happy, happy, happy.  Went into Jackson Hole, Wyoming (6^th day on the road) and a massive meltdown ensued.  For some reason it was shocking to us.  What was wrong with our angelic boy?  We soon figured it out.  We were walking by restaurant after restaurant and not stopping!  Jackson thought we were coming to this tourist trap to eat!  We found him some food and he resumed his happiness.  He only had one other meltdown and that was at Old Faithful.  I think this meltdown was due to being over tired.  After a nap he was fine again.  8 full days on the road, 2 mini meltdowns, amazing!  The kids apparently just needs to be going all the time.  He doesn’t want to lie around the house relaxing the summer away.  He wants to hit the open road, listen to great music, and see the sights.  I love that about him, but since we can’t afford anymore weeklong road trips this summer we may be in trouble.  I think though that our summer plans from here on out will be some weekend camping trips or day trips to various spots here in the Pacific Northwest.  If that will make Jackson happy and give us a break from the screaming fits then that is what we will do.  As Iris Murdoch once said “One of the secrets of a happy life is continuous small treats.”  Jackson’s small treats are road trips.  My small treat is a non-fit throwing child.  Open roads are our salvation.

The reprieve was wonderful.  We weren’t home 15 hours before the fits resumed.  Oh how I wish to be on the road again.  For now I will just have to try and keep my sanity, what’s left of it anyway. 

P.S. If you are a parent of a child with a permanent disability you can get a free lifetime pass into all the National Parks.  It is called an Access Pass.  You can also get discounted camping fees.  One night our camping would have been $25 but was only $10.25 with the Access Pass.  Go to any National Park website for details. 

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

Cracked Pot

An elderly Chinese woman had two large pots, each hung on the ends of a pole which she carried across her neck.

One of the pots had a crack in it while the other pot was perfect and always delivered a full portion of water.

At the end of the long walks from the stream to the house, the cracked pot arrived only half full.

For a full two years this went on daily, with the woman bringing home only one and a half pots of water.

Of course, the perfect pot was proud of its accomplishments.  But the poor cracked pot was ashamed of its own imperfection, and miserable that it could only do half of what it had been made to do.
After two years of what it perceived to be bitter failure, it spoke to the woman one day by the stream.

'I am ashamed of myself, because this crack in my side causes water to leak out all the way back to your house.'
The old woman smiled, 'Did you notice that there are flowers on your side of the path, but not on the other pot's side?'

'That's because I have always known about your flaw, so I planted flower seeds on your side of the path, and every day while we walk back, you water them.'  For two years I have been able to pick these beautiful flowers to decorate the table.
Without you being just the way you are, there would not be this beauty to grace the house.'
Each of us has our own unique flaw. But it's the cracks and flaws we each have that make our lives together so very interesting and rewarding.
You’ve just got to take each person for what they are and look for the good in them.