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.

Sandy

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.

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.” 

Tattoo

A few months ago I was sick with the flu and confined to bed for a couple of days.  As I scrolled through channels trying to find a daytime TV show that was mildly interesting, I stumbled upon repeats of LA Ink.  I decided to watch it just to see what all the hoopla about Kat Von D. was.  Little did I know that watching that one show would lead to me getting a tattoo a couple of weeks ago. 

I’ve never been a big fan of tattoos.  My Dad had one on his arm from when he was in the Navy but that was pretty much the extent of my exposure to and knowledge about tattoos.  For my 30^th birthday my sister thought it would be fun if we went together and got tattoos.  At first I had no desire.  But then I thought “What the heck, you only live once.”  So I did a little research and decided to get two fish (I’m a Pisces) in the Ying and Yang position.  Since I am a teacher I put it where no one could see it – on my butt.  My Dad was mildly horrified about it.  I believe he said “Where did I go wrong in parenting you?”  I would say 99% of the time I don’t even remember that tattoo, I don’t usually walk around looking at my butt. 

When I started watching LA Ink what attracted me most to the show were the stories of why people were getting their tattoos.  There were a lot of touching stories but what got me were the people who wanted tattoos to honor a loved one that wasn’t with them anymore.  That is when I started thinking about Dad and how I wished I had something to honor and remember him by.  I started researching and planning my tattoo shortly after that first episode. 

I knew two things that I wanted – an anchor and the Japanese/Kanji symbol for Dad.  I wanted the anchor for two reasons – (1) because my Dad was always my anchor and (2) because my Dad loved and was proud of being in the Navy.  I wanted the Kanji symbol for Dad because my Dad always said Japan was his favorite place he went to in the Navy.  I also knew where the tattoo would go, right above my ankle on the right side of my body.  It’s my special reminder that Dad will always be right by my side.  When did I get the tattoo?  On the second anniversary of my Dad’s death. 

I’m sure some people may think there are plenty of other ways to honor someone.  I know there are.  But this is my way and I am so happy I did it.  What I really didn’t expect was how comforting this tattoo would be to me.  Unlike the one on my butt I see this tattoo numerous times throughout the day.  It makes me smile and sometimes it makes me cry.  Mostly though, I just feel like Dad is really with me now.  No matter how much I miss him and would give anything for one more hug or one more story, his presence is something I carry with me.  That means the world to me. 

As I was getting my tattoo I could literally hear Dad’s voice in my head saying “STACEY LYNN!  What are you doing?!”  If he was alive I think he would be slightly mortified that I “inked” my body for him.  I also know that he would be proud that his little girl loved him enough to do it.  My Dad was always proud of me, now I can finally show the world how proud I am of him and most importantly how proud I am to be his little girl.  Wherever you are Dad, this tattoo is for you!

A Hodgepodge of News

Time has been flying by it seems.  Jackson is growing, Loki is growing, the laundry continues to pile up along with the dishes.  Life continues on.  But the last couple of weeks have brought on a hodgepodge of new milestones in our lives.  Let’s start with some good news.

Last week I ordered a wheelchair for Jackson.  It was a good thing that brought a few conflicting emotions.  I am happy that he will have a wheelchair because he has almost outgrown his umbrella stroller.  Not to mention that it doesn’t provide any real sitting up support for him.   We have a specialized stroller that we got when he was two but it is giant, takes up most of the extra space in the car and is quite heavy.  It is also too large for him to be able to use in the classroom.  The wheelchair will give him the sitting up straight support he needs, is light and folds up easy for the car, and will be the right size for his classroom.  I have to admit though that I was hoping Jackson would be walking by now.  I knew from the beginning that every milestone was going to take a very long time with Jackson, but if there has ever been anything that I have been certain of with Jackson’s future, it’s that he would walk someday.  I know now I am going to have to wait longer than I thought.  I still believe he will walk someday so my new hope is that by the time he outgrows this wheelchair, we won’t need to order another one!

Speaking of sitting up….Jackson is doing fabulous with his sitting.  He sits for long periods of time now and seems to want to sit up more and more every day.  He sits up constantly in his bed but is still working on sitting up on the floor.  The other day he was lying on the floor with Loki while I made lunch.  I said “Hey Jackson you should sit up and pet Loki.”  A couple of minutes later I looked over at them and couldn’t believe what I saw.  Jackson had sat up and was petting Loki!  I am not making this up!  Coincidence, maybe.  I just prefer to think that Jackson is a good little boy who listens to his Mommy.

Another great milestone (well maybe not a milestone but an accomplishment) Jackson achieved was on Mother’s Day.  For obvious reasons I didn’t feel like cooking dinner that day so we decided to go a restaurant.  Typically, going to a restaurant with Jackson is unpleasant (an understatement).  He knows we are in a place where there is food.  He feels that the whole entire time we are in that food building we should be doing nothing but eating.  Jackson’s obsession with food is remarkable, annoying at times, but nevertheless remarkable.  The minute we sit down the food must start.  The food may only stop coming in to his mouth as we walk out the door or a massive fit will be thrown.  Perhaps this isn’t an unreasonable request, but for Jackson’s reflux and spitting up it is.  If you feed him too much, throwing up will be the result.  It’s an evil game.  But off we went anyway.  Like clockwork the second we sat down Jackson started signing “eat” and “more”.  We were at a Mexican restaurant so luckily they brought us tortilla chips to start with.  We quickly began feeding Jackson tiny bits of chips and ordered our food as fast as possible.  Just when we ran out of chips and were faced with a meltdown our food arrived.  Whew!  Bite after bite was put into Jackson’s mouth.  Soon the food was over.  Kevin and I quickly hatched a plan for the meltdown.  Kevin would grab Jackson and head outside while Mommy would gather all our stuff and quickly pay the bill.  But a funny thing happened.  The meltdown never came.  We told Jackson the food was all gone.  They waiter took our plates.  We continued to wait for the meltdown.  The bill came, still no meltdown.  We paid and packed up, nope, no meltdown.  We got to the car, no meltdown.  We began driving, happy little boy in the backseat played with his toys.  Everybody was happy!  Kevin and I especially!  We agreed that this was the best Jackson had ever done in a restaurant.  Maybe it was Jackson’s Mother’s Day gift to me.  Who knows, but I’ll take it.  I am slightly apprehensive but hopeful that someday we can go to a restaurant again and have a nice meal without a meltdown!

Another milestone in Jackson’s life last week was that he went to Silverwood Theme Park for the first time!  Silverwood is over in Idaho about 20 minutes north of Coeur d’Alene and is kind of like a mini Six Flags park.  Every year they host a “Night of Stars” for special needs people and their families.  Each family gets two free passes and dinner.  Additional family members pay just $15 for entranced and dinner.  Typically it is like $50 for a pass into Silverwood so it was an amazing deal.  Unsure of whether Jackson would be able to ride any rides or would have any fun, we got tickets months ago and thought we would give it a try.  It turned out to be a beautiful evening weather wise and a great evening for our family.  Jackson was only able to ride 2 of the rides but he still had a great time.  Of course he loved the dinner, and Daddy got us a cinnamon sugar elephant ear which Jackson was crazy for!  It was a really fun night and Jackson seemed to enjoy it.  As long as we are invited we will go every year, and I think if Jackson keeps making progress like he has been lately, he will be able to ride more rides next year.  Thanks to Silverwood for supporting our family and giving us a great night!

The last bit of news to share is not a happy one.  A week and a half ago Jackson woke up from his nap and he was acting weird.  He seemed tired but also kind of out of it.  I thought maybe some food and a walk would wake him up, so after dinner we went for a walk.  We made it about a block from the house when Jackson slumped forward.  I stopped and sat him back up.  When I looked at him he just didn’t look right.  His eyes were looking up, his body was like a wet noodle.  I said his name and he looked at me briefly but then he jerked a couple of times.  I kept calling his name and he finally sat up and looked at me although he seemed weird.  I knew he had had a seizure.  I turned around to come home and he just kept getting more and more aggravated.  I tried giving him a bath and that didn’t even calm him down.  I finally just put him in his pajamas and put him to bed.  He fell asleep fairly quickly.  The next day I called the neurologist and he agreed that it sounded like a seizure.  We didn’t increase his medications but will continue to watch him to see if he has another one.  It was pretty scary to see Jackson like that.  I know how lucky we have been with the medication that stopped his seizures.  I am thankful every day that the seizures have gone away.  I worry every day they will come back.  I hope this seizure isn’t a sign of them returning. 

After a post about milestones I think it is best to conclude with a quote from Rose Kennedy.  “Life isn’t a matter of milestones but of moments.”

Happy Birthday My Little Monkey

Last week Jackson turned 4.  So I did what all good Mommy's do, I got him a puppy.  Yeah I know, just what every 4 year old needs.  What really happened is that I was volunteering at an event for the local animal shelter, SCRAPS, and saw this little puppy.  The second I held him I just had a feeling that he was our puppy.  After a bargaining session with my husband (3 weekends of mountain climbing in exchange for the dog) and a 4 day wait to get the puppy while he got neutered and I was out of town, we had ourselves a dog.  And since we picked it up on Jackson’s birthday it just seemed like it was his birthday present.  Besides, Jackson needs a little buddy to lie on the floor and play with and to someday run around the yard with. 

Our new pup, Loki, seems to be a pretty smart little dog.  He is a mix of German Shepherd, Lab, and Rottweiler.  He is gentle, sweet, cuddly and has these hilarious bursts of energy every night around 7 p.m.  Jackson fell in love with Loki and Loki fell in love with Jackson right from the start.  But Jackson has had his “get this dog out of here moments.”  We had a few days of him being grouchy and moody.  I think the adjustment was a little tough on him.  Mommy was spending a lot of time with Loki which made him jealous.  This week Jackson is back to his happy self and Loki is doing a very good job of being “gentle” with Jackson.  There are less nibbles on his feet and more licks on his hands.  This morning Loki walked over to Jackson, who was sitting on the floor, and started licking his ear, much to Jackson’s giggling delight.  I think those two are going to be good buddies one day, and I am looking forward to watching that friendship grow. 

"Of all the things that wisdom provides to help one live one's entire life in happiness, the greatest by far is the possession of friendship."
— Epicurus