Struggling

It would appear that Jackson’s seizures are making a comeback.  And with it brings this constant worry, this ache in my stomach, this scary feeling that something awful will happen to him, that he will regress and lose all the progress he has made, that he will go back to being miserable from the constant seizing, but most of all that I will lose him.  I know it is an irrational fear.  I know I have no control over what happens, but I just can’t stop worrying. 

My husband said to me that I just got too comfortable with Jackson not having seizures.  Damn straight I got comfortable.  It was so easy to watch my kid become a happy, alert boy who was finally making progress.  Not seeing those nasty, unforgiving seizures take over Jackson on a daily basis was elating.  I knew on some level they were still hiding in there.  That one day they would reappear.  The neurologist has always made it clear that Jackson will never really be seizure free.  That because of his brain malformation seizures will plague him throughout his life.  I just wanted to forget them for a while and enjoy watching him being a happy little boy.  I needed to feel happy too.  After a couple of years and wondering “Why my kid?” and watching other parents enjoy their “neurotypical” children’s success, I was desperately needing to be happy for a while.  Maybe that is selfish or maybe that is a normal response to this different mothering experience I am having.  Who knows.  Either way I got used to it, was comfortable, and by god I was happy.  And now here we are again.

In July Jackson has 3 seizures so we upped his medication.  He had one in August, one in September (that lasted 10 minutes) and then Jackson had a seizure last week while riding horses.  We immediately got him off the horse.  Laid him down in the back of the car and waited the 7 minutes it lasted.  I of course didn’t have the medication we are supposed to administer if a seizure lasts more than 5 minutes, and we were far outside of town on the ranch.  The medication is now permanently in my purse and travels with us wherever we go.  Jackson fell asleep right afterwards and took over a 3 hour nap that day.  It really wore him out.  But he bounced back to his happy self by that evening.  Then 4 days later he had another one, this time in the bath.  I got him out and laid him down on the floor, his breathing was not good with this one.  He stopped breathing a few times.  His lips even turned blue.  The seizure lasted 5 minutes.  But this time he was having trouble afterwards.  He went right into a high fever, his eyes were glassy and red, and he just wasn’t really responding to me.  After a few minutes I was worried that he was in trouble.  I got all 3 kids in the car and we headed for the ER.  By the time we got there Jackson was just hysterical.  A swarm of nurses and doctors were in the room working on Jackson and thankfully a wonderful woman came and took Daniel and Sylvia to a different room to watch Finding Nemo, color and have some snacks.  (After we were discharged and headed to the car, Sylvia says “That was fun!” and Daniel said “Yeah, really fun!”  I guess I don’t have to worry they were too scarred from that ER visit.)  They gave Jackson some medication to calm him down and then he was able to rest a bit.  His vitals were good and nothing appeared out of the ordinary.  But once that medicine wore off he went back to being hysterical.  After going over some options we decided to just take him home.  He still had a fever but it was fairly low.  Once we got home he finally calmed down and went right to bed.  He didn’t sleep well that night though and I kept giving him ibuprofen and Tylenol to get rid of that fever.  He stayed home from school for the next two days to fight the fever and rest.  He’s back to his regular schedule and to being a happy 5 year old.  He rode horses yesterday and did fine.  The neurologist upped his medication again so we will see how that goes. 

Yesterday I dug out all my epilepsy books and started researching these new types of seizures he is having, tonic-clonic.  Here I go again.  I always try to remind myself that I am a much better mom when I am not sad and feeling sorry for my baby.  I do much better when I am vigilant and a bit pissed off.  My mind is clearer and I can focus well that way.  It’s time to go to the angry mom phase and get some work done.  Which reminds me of a lively little quote by J. Rumi: 

You must become ignorant of all you've been taught

And be, instead, bewildered!

Run from what's comfortable and profitable.

Run, run, run!

If you drink those sweet liquers you'll spill

The springwater of your real life.

Forget safety

Live where you fear to live.

Be notorious

Destroy your reputation.

You have tried prudent planning for long enough.

From now on, live mad.

Damn Mysteries

The other day Daniel asked me if had been a year since he and Sylvia came to live with us.  I laughed and said “No but it feels that way some days!”  He laughed and said “Yup it seems like forever!”  I had to do the math to realize they have been with us for a short 5 ½ months.  And what a 5 ½ months it has been.  Being a parent is hard.  Being a parent of foster children is kind of surreal.  I’ve read 9 gigantic files on the kids and know their history according to the State of Washington.  But there is so much I don’t know.  Since they are young, they don’t remember a lot and can’t tell me what I want to know.  Typical to my life as a mom, I have two more children who are a mystery to me.

The stories I know of the kids are stories that I don’t think they need to know, yet.  Someday we will tell them their history, but for now they don’t need to know the details.  They need to be kids and have a childhood filled with good memories, not the ones they were so unfairly given.  The truth is, it’s hard.  Whenever I tell them a story of Jackson as a baby they want to hear more.  I know they were wishing I had stories of them.  So do I.  I wish I knew what they were like as babies.  I so wish I had a baby story to tell them.  The first few years of their life may never fully be told.  That’s hard for me to grasp, I can’t imagine what they must think about it. 

All we can do is go forward.  What I have found the last few months is that is easier said than done.  Becoming a mom to 2 children ages 7 and 9 is kind of like marrying someone after only knowing them for a couple of months.  They are so wonderful.  Then you get married and realize they don’t put the cap on the toothpaste, have terrible aim at the toilet, leave their dirty underwear on the floor and their dishes in the sink.  Reality sets in.  You begin to wonder what the hell you were thinking.  But you made this commitment and you aren’t backing out of it.  There are tough days.  Days when you go to bed thinking you have failed repeatedly throughout the day.  Days when you wish you could take back about 1000 things you did or said.  Then there are awesome days.  Days when you realize you are making a difference in their lives.  Days when you realize you are giving them a life they could never imagine would happen.  Days when you built memories you know they won’t forget.  Highs and lows.  What I try to remember though is that we are still in our honeymoon period and that we are all learning as we go.  We will get to our cohesive place someday.  In the meantime I keep in mind the advice of Nelson Mandela who said “What counts in life is not the mere fact that we have lived.  It is what difference we have made to the lives of others that will determine the significance of the life we lead.”  Well said President Mandela.

Summer Endings

This week school started here in the Pacific Northwest.  If you listened hard enough you could hear a collective sigh from the parents throughout the city.  I think mine was loud enough to power the city for 3 minutes.  Surprisingly the summer flew by.  I distinctly remember the last day of school and feeling panicked about what the heck I was going to do with 3 kids all summer long.  Then I spent the last two weeks of summer break trying to fit in all the things I wanted to do over the summer that we never had time for.  I suppose I am like all the other crazy haired moms surviving summer.  Survive I did though and I am expecting my survival badge to arrive in the mail any day now.

For the kids’ part they had a fun filled summer – Florida, swimming, boating, amusement parks, camping, riding bikes, lazy days at home playing, and summer camps.  For this Mama’s part it was the best of times, it was the worst of times.  It was fun to experience a different kind of summer.  One thing I discovered is that I underestimate Jackson and his ability to have fun.  I decided this summer that I was going to take Jackson on as many adventures as I could with the kids.  I want him to have all the experiences that other children have.  There is a part of me that always thinks “Oh he won’t like doing that.”  In typical form that kid proved me wrong quite a few times this summer.  I think the most amazing thing he did this summer was sit through an Imax movie.  As part of the package to ride the amusement park rides downtown in Riverfront Park you get to go to an Imax movie.  I didn’t want Daniel and Sylvia to not get to go because of Jackson so I stocked my purse with Hot Tamales (Jackson’s favorite candy) and came up with a backup plan if Jackson didn’t make it through the movie (which was about sharks!).  I was nervous and anxious.  Once the movie started Jackson looked up at the screen and had this “What the…?” look on his face.  He was moving his head around looking at different parts of the giant screen trying to figure out what was happening.  5 minutes went by.  I couldn’t take my eyes of Jackson.  He was really engaged.  Then 10 minutes went by.  15.  20. And then he started making noise.  I whipped out the Hot Tamales and he was happy and engaged again.  The movie was only about 35 minutes long but when it ended I had to use all my energy not to cry.  Jackson made it through an Imax!  It was unbelievable.  Going to an Imax movie with Jackson wasn’t something I thought we would ever do.  But we did and it was awesome!

Having kids home for the summer is a lot of work.  Those of you who do it know what I am talking about.  Between the appointments, errands and simple every day stuff there isn’t a lot of time for moms to relax and take a few moments to herself.  There were days when I was so tired I didn’t have the energy to brush my teeth.  My motivation to keep going was a 4 day trip to Whidbey Island with my best friend Tami.  Boy did I need that vacation!  Just taking care of myself, eating good seafood, sleeping without a baby monitor next to my head, and the calming sounds of the ocean.  The trip was great but the best part was upon my return hearing my husband (who spent 4 days with the kids by himself) say “You work your ass off.  I never had any time to myself.”  I know he appreciates what I do every day and understands it is hard work, but hearing those words and having him acknowledge it, well it made my whole summer! 

As we head into the school year remember that “There is no end to education.  It is not that you read a book, pass an examination, and finish with education.  The whole of life, from the moment you are born to the moment you die, is a process of learning.” – Jiddu Krishnamurti

 

 

 

 

 

Words out of My Mouth

This isn't my post, but this Special Mama took the words right out of my mouth.  Wanted to share with you all.  Take a moment to read.

http://www.huffingtonpost.com/suzanne-perryman-/to-the-author-of-the-anonymous-note-left-on-my-car-window_b_3806012.html?utm_hp_ref=mostpopular

Stages

When you are a special needs parent you go through a lot of stages, at least I have.  Some are bad, some are good, and none of them show any signs of leaving.  One of the worst ones is when you start walking down the road of “Why my child?”  That’s a dangerous one and hard to find a way to turn around.  I could write forever about that hideous stage, but I’m not in the mood right now.  Then there is the stage of simply forgetting your child has special needs, that there is anything different about your family and you just live your life, enjoying your child and all the joy he, or she, brings you.  That’s the really good stage.  Unfortunately, something always happens to snap you out of that stage and brings you back to the reality of the situation.  This week has done that for me.  But I’m finding out that maybe being snapped back to reality isn’t all that bad. 

This week Jackson attended his very first summer day camp.  It is a special camp for children with special needs.  I was so excited for him to have this opportunity.  I know a lot of kids with special needs don’t get to go to camp.  What I really want most for Jackson is to simply have the same opportunities that other kids have.  That includes going off to camp in the summer.  I planned to stay with him all week simply because I didn't know anyone running the camp and to make sure that all his needs were met.  So off we went to camp!  When we got there I was instantly struck with how many kids were there, about 30.  I was also struck with the various severities of disabilities in the crowd.  Jackson was the youngest, most of them were teenagers.  As we stood there getting ready for the pool I was watching all the kids.  And it hit me.  This is my future.  Jackson could be any one of these kids.  Maybe he is the boy sitting in the grass rocking back and forth.  Maybe he is the girl who came up and smelled my hands.  Perhaps he is the boy flapping is his arms as the train goes by.  Or the teenage girl whose speech isn’t understandable.  The truth is, it made me kind of sad.  That first day was hard on me.  I was so excited for Jackson to go to camp, but it made me think of his future and what his future might look like.  I try not to think much about his future.  Maybe that is why it was hard for me.  With Jackson I just kind of need to live day to day.  I don’t know what that kid is going to do every day let alone 5 years from now.  Yet there I was faced with his possible future.  I didn’t really want to go back that second day but the camp wasn’t about me, it was about Jackson. 

The second day was much like the first but a little easier for me.  By the third day I found that I was really starting to enjoy the kids.  I kept noticing an underlying theme with all of them.  Loving.  They were all so loving.  Because Jackson was the youngest they all thought he was a baby.  He was quite popular, especially with the girls.  Every morning they would greet him with a “Good morning Jackson!”, they would rub his head, give him a kiss on the cheek, hold his hand, fight over who got to push his wheelchair, and they would sit in the shallow end of the pool and play with him.  It was so touching to watch.  I could see Jackson light up with a few of them and I knew he had some new friends.   By the time the week was over I was sad to leave the kids and sad for Jackson that his camp was over. 

This week made me realize how lucky Jackson’s fellow campers are.  Their disabilities may make them stand out from the norm and to some that may be a bad/weird/uncomfortable thing.  But I think they actually have an advantage over people without disabilities.  They see the world differently.  To them the world is about love and caring for each other.  Not about making fun of others, hurting people’s feelings, being a bully or acting better than anyone else.  Things many neurotypical children do.  In that regard, I want Jackson to grow up to be like his fellow campers, not a neurotypical child.  I want his friends to love and care about him, not make fun of him or make him feel he isn’t worthy.  I want my son to be someone who sees the good in all people and not focus on differences that set others apart.  After all, as Benjamin Disraeli said “We are all born for love…It is the principle of existence, and its only end."

Back to the Star

My last few blog posts have been mostly about the two new little grasshoppers who have entered our life.  I think it is about time I spend a little time writing about the star of the blog – Jackson!  With the addition of a brother and sister, his life has been turned upside down and around.  Factor in the daily happenings in his own little world and it adds up to quite a lot of busyness, for him and for me. 

Adding two kids into our home has made it difficult to focus on Jackson and give him the attention he once had.  I miss it.  I’m very conscious of the fact that siblings of children who have special needs often get overlooked and don’t get all the attention they need.  I don’t want that to happen.  To make it not happen I have to make sure that my attention is equally distributed.  Impossible.  No matter what, Jackson requires more care and attention.  This balancing act is proving to be more challenging than I imagined.  I have found that the attention I give Jackson is more focused and centered.  With my limited time I have to make sure every second counts with him.  There is a part of me that feels guilty though.  I know having siblings will be the best thing for Jackson.  He seems to enjoy having the other two kids around.  He smiles at them as they walk by or when they stop and talk to him so I know he likes them.  But part of me worries what he might be feeling.  I wonder if he feels like I have abandoned him a little.  If he misses the attention, if he is jealous, if he is mad at me.  It makes me sad to think about that and I hope he understands.  A mother with guilt is what I am.  So basically I am a regular mother.

Jackson has had a few seizures recently.  The seizures he is having now are different than the ones from before.  For starters, they last a long time.  One was approximately 7 minutes long.  He is exhausted after them and typically pretty cranky.  They are hard on him and take a lot out of him.  It’s difficult to watch.  We’ve increased his medication again so hopefully that will help.  Every time he has one I find myself going down a deep hole.  I hate the seizures so much.  Watching him have one sucks me dry.  Afterwards I can’t focus, I often cry, I go down that “Why Jackson?” road, and I want to scream and throw things.  We’ve been so lucky the last year or so having him seizure free.  He’s made so much progress and is finally a happy little boy who interacts with us.  I live in fear that the seizures will return and we will lose Jackson again.  That all this progress he has made will be lost in the flurry of electrical activity of his brain.  It’s not a good feeling to live like that.

Being a parent of a child with special needs is a wonderful, emotional journey.  It has taken me a long time to focus on the good things and not the bad.  The other day a song came on the radio that reminded me of the journey.  2 years ago I put up a post called Hello World, based on the Lady Antebellum song.  It was during a difficult time that I wrote that post.  When I heard it the other day I started reflecting on how far I’ve come as a Mom.  How I’ve come to accept Jackson for all he is.  How he’s motivated me to be a better person and help others.  Then he started having seizures again and it threw me back to those difficult times.  I could feel myself turning down that dark road.  It takes a lot of energy to try and pull myself out of the car and not drive down that road.  But I have to.  I know that there are always going to be challenges in my life with Jackson.  There are challenges with every child.  How I handle and respond to those challenges is what shapes me.  I can go down the dark road or I can stay on the road we are on.  I want to stay on the road we are on, I just wish there were a few more palm trees on it.

And speaking of palm trees….we are home from our 2 week vacation in Florida.  Jackson loves Florida.  He loves the pool, he loves the beach, and most of all he loves his family.  His teenage cousins dote all over him.  They only get to see him once a year so they focus their time and attention on him and Jackson loves it.  Not to mention the aunts and uncles coming and going and the Grandma and Grandpa who think he is the best thing in the world.  He is not without love in Florida that is for sure.  Despite the bouts of diarrhea (and the dreaded BRAT diet) he had in Florida, he managed to have a great time and was happy as can be.  That kid doesn’t let a little poop stop him from having fun. 

This time I leave you with a quote that seems fitting to remind all of us to stay on the right road.  “We either make ourselves miserable, or we make ourselves strong.  The amount of work is the same.” ~ Carlos Castaneda

New Adventures

The Klim family has had an armload of adventures this past month.  There were the chaotic last days of school during which I found it important to volunteer for field trips and field day.  I have no idea why.  Nor do I know why schools pack in all that stuff at the end.  Don’t they know Mom’s want to spend the last few days of school napping to rest up for the summer ahead?  These days were then followed by the end of the school.  Such happy children, such distressed moms.  Ultimately that all lead to three children at home all day long, an adventure I think is fairly unnecessary.  I would just like to put in a supportive plug here for all schools to go year round.  Please!

So here we are 3 weeks into summer break and what are we doing?  Vacationing in Florida!  And to get here we flew on a plane, which is something 2 of our children had never done before.  This was a grand adventure that I enjoyed thoroughly.  It entailed tears and laughter on my end.  We had to get up at 4 a.m. to get ready and I can honestly say I don’t think I’ve ever seen the kids move so fast – eat breakfast, put on clothes, brush teeth, comb hair, get shoes on, get backpacks – this all happened in nearly a blink of the eye.  Their excitement was overflowing.  Everything was so new to them and they just took it all in with wide eyes and wonderment.  The best part was taking off in that plane.  I couldn’t count how many “Whoa!” I heard.  Or “Look at that!”  It was so much fun.  Watching their little faces made me tear up.  To be a part of that is something I will never forget.  We of course had to take off and land 2 more times so it was quite the exciting day.  Jackson was a traveling champ as usual.  The kid is an old hand at traveling on the plane.  My only regret is that I didn’t get him a frequent flyer number when he was born.  Ten trips to Florida, one trip to Connecticut, and at least 5 trips to Denver could have added up to some good flyer points! 

Last month the kids took swimming lessons in preparation for our trip to Florida.  My husband’s parents have a swimming pool and I wanted them to have some experience in the pool before we came here.  When we arrived at Grandma and Grandpa’s, at 10:30 at night, the requests to get in the pool began.  A week later they are still going strong.  They are barely awake and out of bed when they ask “Can we get in the pool?”  Whenever the answer is no they get the most deflated look ever on their face.  You would think I just took Christmas away.  The great thing is that they are getting so confident in the water and learning to love being in the water.  They both failed their swimming class because they weren’t confident.  Progress is being made!   Jackson on the other hand loves the pool so much and is a giggling mess whenever he gets in.  He loves the water and he especially loves being around all the other kids in the pool.  Lots of splashing, moving around and laughter is what you experience when you walk outside here in Vero Beach, Florida! 

The next big adventure was watching the kids see the ocean for the first time.  Another tearful moment for this mama.  Their screams and laughter said it all.  They love the ocean, sand and “treasures” (i.e. seashells).  Endless fun abounds when we head to the beach.  The beach and ocean just happen to be Jackson’s favorite place on earth so there are no complaints from him when we are there, only pure utter joy and the salty taste of the grand old ocean.   

Most people who come to Florida come for one main attraction, Disney World.  That was my destination on my first visit to Florida.  I thought it would be awesome to surprise the kids and take them there one day.  Sadly, Disney must feel their 2013 first quarter profit of $383 million is not enough so they have outrageous ticket prices.  Ultimately making it unaffordable for regular folk like us.  Just to get into the park would have cost us $454!  That’s a bit much for one day of entertainment.  Shame on you Disney!  It definitely is not the happiest place on earth.  Instead we surprised the kids by taking them to Lion Country Safari, an outdoor drive through safari in West Palm Beach.  The kids loved it!  Who doesn’t love seeing monkeys, giraffes, lions, zebras, hippos, camels and African deer.  Since Sylvia loves animals she was in heaven.  It was a great day and another first – exotic animals.     

Oliver Wendell Holmes said “One's mind, once stretched by a new idea, never regains its original dimensions.”  My kids have had their world opened up to them on this trip.  I don’t think their minds will ever regain its original dimensions and I think that is awesome!