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

A 2 here, a 3 there, and a 4 in the end

My little boy is going to turn 4 years old next week.  That is extremely surprising to me.  Where did the time go?  It seems like he was in my belly, kicking the crap out of me just a few days ago. 

Every April brings about a major milestone – Jackson’s birthday pictures.  We go to Sears and have them done.  We used to go twice a year (every six months) but it was just too much for us.  Getting Jackson’s picture taken is kind of like getting a shark to let go of your leg after he has clamped down.  I’m not exaggerating.  By the time we get home I feel like I need medical care.  To get ready for the special occasion I always buy Jackson a new outfit and we give him a haircut.  The last time Jackson had a haircut was back in December while we were in Florida.  At any given time it took 3-4 people to get that haircut done.  I was not looking forward to another one.  But his hair had grown long and it had to be done.  The mistake I made this time was trying to do it alone.  Kevin was working late and I thought “I can do this.”  Turns out I can’t.  Imagine having one hand with an electric shaver in it and the other hand holding a squirming child’s head, arms and upper body still.  It’s just not humanly possible.  I did incorporate some of my recent relearned yoga moves though.  I put my leg up in the high chair to pin his arms and hands down.  Balancing on one leg I then used one of my arms to pin his head still while using the other hand to cut his hair.  Did I ever mention that I got the Parent of the Year award last year from the Guild School?  They are probably going to ask for it back now.  Anyhoo, even that didn’t work.  I got his hair to what I thought was an acceptable look.  I was fairly proud of myself.  Until the next morning when Jackson woke up and I saw numerous unshaven sections of hair on his head.  The kid looked downright pathetic.  His Daddy laughed when he saw it, I warned his therapist to not laugh but he couldn’t help himself, and his respite care provider laughed almost every time she looked at him.  That night we (I now had help from Daddy) tackled the hair again and it finally came out decent.  2 attempts at a haircut.

This year as we were driving to Sears for the dreaded birthday pictures my optimistic husband said “I think this year is going to be different.”  I love him for his hope.  But I think he also cursed us.  Indeed this year was different.  It wasn’t just one long excruciating visit to get his picture taken, it was 3.  Our first visit didn’t entail any smiles or very many attempts to look at the camera.  I even came prepared this time – food, drink, extra clothes, extra diapers, and of course toys that typically get his attention or illicit a smile.  Those toys were worthless.  Jackson wasn’t having any of it.  It didn’t help that he was kind of lethargic that day.  After about an hour and no response the photographer suggested we come back later.  We headed home with an appointment for later that evening.  We got home, fed him, and put him down for a nap with high hopes that he would wake up smiling and happy.  He woke up a little less lethargic so we decided to give it another try and headed back to Sears.  It was a wasted trip.  He still had no smiles or interest in looking at the camera.  The kid was killing me.  Again we left with an appointment for the next day.  The next morning Jackson woke up in a happy, laughing mood.  Yes!  We were going to get pictures done today, I just knew it.  Back to Sears we went.  As soon as we got back in the picture studio Jackson recognized the place and the non-smiling, camera ignoring kid returned.  Dangit!  We were desperate, so I had to take desperate measures.  I’m not proud of it, and I definitely reached a new low, but I got out the Teddy Graham’s and started bribing him with food.  “See the cookie Jackson?  Smile and Mommy will give you one!”  It worked for a total of 3 smiling pictures and that was the end of our picture session.  We did manage to get those three good pictures, however, the best one of him smiling also showed us a mouth full of food.  You win some you lose some.  3 attempts at pictures.

As Teddy Roosevelt once said “Do what you can with what you have, where you are.”  Point taken Teddy.

Whew!

Someday I would love to be able to sit down and write a post for my blog that simply says “Nothing new to report, same old same old here at the Klim house.”  A girl can dream right?

I really don’t know why I bother planning things.  Curveballs are always being thrown at me and I am constantly adjusting my plans.  But the truth is I’m a planner and I will probably never learn to “Go with the flow”.  I had all sorts of plans for Jackson’s spring break, none of which came to fruition.  Instead I spent Jackson’s spring break being fairly miserable.  Why?  Because Jackson was miserable.  His screaming seemed never ending.  He had his “I’m mad about something” screams and his “I’m in terrible pain” screams.  Mostly it was his pain screams.  When your child is spending his whole day screaming in pain and you can’t identify why, it is the most frustrating and heartbreaking experience you can have.  Since Jackson can’t tell me what is wrong, it becomes a process of elimination.  After going to the ER after a day of screaming, they couldn’t identify anything that was wrong.  They did another X-Ray and discovered that Jackson’s constipation from the week before (oh yeah, we had gone to the ER the week before and after an X-Ray found that Jackson was constipated, again, which accounted for his screaming in pain the week before) was pretty much cleared up.  And they didn’t see anything else in the X-Ray that would explain his pain.  They just sent us home with our screaming baby.  So it wasn’t constipation.  What could it be?  The process of elimination began.  We went to the dentist because when he is screaming he sometimes puts his hand in his mouth.  Maybe it was a bad tooth?  The dentist said his teeth were fine but we did find a canker sore.  Painful yes, but not to the point where he should be screaming all day.  Then we went to the pediatrician, they had no answers but we did have them look at the all the little bumps on Jackson’s tummy and back which turned out to be mulluscom.  One of them was angry (red) so the doctor popped it and gave us a prescription for some cream so it didn’t get infected.  Next up was our neurologist.  He didn’t feel it was anything neurological.   I did tell him that Jackson’s acid reflux had kicked back up in the last week so he told us to increase the Prevacid from one pill a day to two.    He also suggested we get an abdominal ultrasound.  At this point the week was up and I was running out of doctors.  I made an appointment with the gastroenterologist which is tomorrow.  However, since increasing the Prevacid Jackson has had a couple of good days.  In fact, he has had two non-screaming days in a row!  He is even laughing again, a sound I desperately missed.  And his acid reflux has seemed to calm down.  We will still go to the doctor tomorrow, tell him what is happening, ask for the ultrasound, and try to find the answer to the screaming.  I really do think he is feeling better and I think being back in school makes him happy.  I know it is making me happy, especially since I am sitting here in my favorite neighborhood bakery finally writing on my blog again.     

I am going to end this post with some good news, I’m tired of my depressing post endings.  So while spring break wasn’t what I thought it was going to be, we did have some great news on that Tuesday.  Jackson was scheduled to have surgery that day.  He has a testicle that hasn’t dropped so they were going in to bring it down (this is all layman’s terms of course, there are some very medical sounding terms for this condition but basically his ball didn’t drop).  Off we went to the hospital Tuesday morning for a 6:00 a.m. (ugh!) check in.  As we were waiting for the doctor I remembered something the ER doc had said that Friday before.  He had felt the said testicle and it appeared to be dropped.  I said to my husband “Wouldn’t it be great if the doctor came in and found it and Jackson didn’t have surgery?”  We both thought this would be awesome but knew we just weren’t going to be that lucky.  Shortly after my optimistic question was posed the doctor arrived to tell us about the procedure.  I mentioned what the ER doc said and he decided to have a look for himself.  After a few minutes of feeling around he said “Yeah, his testicle feels like I would want it to feel after surgery so I don’t really see a need to do the surgery.”  WHAT???!!!!  SERIOUSLY???!!!  I nearly cried tears of joy.  I believe I actually threw my arms up in the air and yelled “YES!”.  My baby didn’t have to go through all that trauma of IV’s, anesthesia, and cutting.  We grabbed our stuff and hightailed it out of that hospital.  I smiled all the way home.  It was a bright spot in an otherwise stressful time for me.  But most importantly Jackson was spared from surgery. 

On that happy note I leave you with the words of the somewhat odd character Oscar Wilde - "I have got to make everything that has happened to me good for me."  That is something I need to strive for!