I was blind, but now I see...

Have you ever had an out of body experience where you suddenly see the world from a different vantage point?  It's like somehow, you are transported outside of your body, and all your thoughts, values, preconceived ideas - they are all left behind.  And somehow you are just able to view a situation without prejudice, or any assumptions at all.  In these salient moments, it's like the veil is lifted or your eyes are suddenly opened for the first time.

I had that experience the other day.  It was absolutely surreal.  It also broke my heart and shook my faith right to it's core.

It wasn't a dramatic moment at all.  Kiefer was playing with Paul in our bed.  They were snuggling and giggling and making jokes.  To be honest, it was a typical Saturday afternoon in our house.

"Please, you tickle me under (Kiefer points to his arm pits)...NO!!!  Daddy  - snort - giggle - DADDY STOP" he musters through laughing.

I don't know why but in that moment I looked at Kiefer and it hit me like a ton of bricks.

My son has special needs.  My son is different from everyone else in his grade.  

Of course I know that he has special needs.  Of course I know we visit the pediatric neurologist once every six months.  I know that we give him "brain altering" (as they explained it to us) medication three times daily.  I know that he doesn't talk the same.  I know that he doesn't act his age.  I KNOW all these things.  But somehow they didn't ever all add up to him being completely different.  He was just a little delayed.  Or he'll get the speech eventually.  So he can't draw as good as his classmates.  I just always thought, he will eventually catch up.  He will eventually heal.  He will eventually grow out of these seizures.  

Individually, all these things were minor differences between him and his classmates.  

But as I listened to him giggle and leave out a preposition as he spoke, all of the sudden all the differences added themselves together and the sum equaled a boy who was different.  

Do you know what I remember about the kids who had special needs from when I was young?  We ignored them.  And ignoring them was the nice thing to do.  Others teased them.  They didn't have friends.  Oh sure, people were friendly to them, but they didn't have a tribe that they associated with day in and day out.  They were loners.  They ate alone and talked to very few people.  They talked when they were talked to.  They didn't get invited to birthday parties or end of school year pool parties, and they didn't go to prom.  They were the misfits that the student body, largely, tried to forget.  

And all of the sudden, this realization came crashing in, flooding my brain like a tidal wave and there was nothing that could stop it.  

My boy is different.  The kind of different people don't like.  The kind of different they don't welcome in.  The kind of different that won't ever catch up.  The kind of different that won't ever heal.  The kind of different - that one day he will wake up and realize he is.  

And I just hugged him.  Tight.  Wanting to make up for all that he will miss out on in life in one big squeezy hug.  

The thing that you don't see, is that I DO like my son.  I do like spending time with him.  He IS different, but he is funny, and caring and courageous and has taught me more about life and how to love unconditionally than anyone else ever has.  He has a heart as big as the ocean.  He knows more about dinosaurs than anyone I have ever met!  He wants the world to be happy and he leaves out NO ONE.   Kiefer brings so much to my life, I could never even hope to capture how much better my life is in words.  He opens my eyes to the tiny things, he brings compassion to our lives, he brings so much love.  

I wish I could go back in time and sit down with one of those kids.  I'd have lunch with them.  I'd share my snacks.  I'd invite them over to my house.  I would be their friend.  Because you know why?  

Not because they needed me.  

Because I needed them.  

💕

What would you ask God?

Christmas break is coming to a close - and while I have cherished the time I have been able to spend with the boys, there has been a lot of fighting between the boys, they are all getting cabin fever and school will be a welcome relief to the whim of being on 'vacation'.

We decided to go to Vaughan Mills Mall tonight so the kids could spend the money Grandma and Grandpa gave them under the Christmas tree.  Of course, we had to hit the best Lego store so off we went.  Kiefer, who's very choosy when it comes to toys, actually found a super villain toy that he LOVES and can't wait to play with - so that was an added bonus.  After the mall, we went to visit Daddy at his work and have dinner at the neighboring mall.  We enjoyed food court dinner (everyone gets exactly what they want) and then watched a show at work on the BIG screen.

On the way home the kids chatted happily about what they were going to do with their new sets and how they were excited to call Grandma and Grandpa and tell them how they had spent the money.

Then, out of the blue, Parker asked me, "Mom, if you could ask God one question what would it be?"  I immediately knew my question - but it was too personal to share.  Then he continued, "Actually, if you could talk to him for 10 minutes and talk about, or ask whatever you wanted, what would you talk about?"

That made me think deeper.  I knew exactly what my first question would be.

"Kiefer.  All his struggles.  WHY?"

The thought almost instantly brought me to tears.  He is an amazing boy who loves to love.  He is concerned with EVERYONE'S happiness.  And his latest request at his last doctors appointment broke my heart.

"Dr. Langburt, please I ask you a question?"

"Sure buddy.  What's up?"

"Please you take my seizures away"

COMPOSE YOURSELF MOM!!!  I could feel my heart instantly breaking into a million pieces but he's looking at the doctor and ME for an answer.   The doctor looked at me helplessly.  This extremely educated pediatric neurologist is lost for words by the question of a 9 year old!  I quickly jump in.

"Well that's why we're here sweetie.  Dr. Langburt is doing everything he knows how to help you get rid of them."

"Maybe you need to ask a friend" Kiefer replies.

Dr. Langburt lets out a little laugh - a pretty big deal for this stoic doctor.

"That's a good idea Kiefer.  I'm going to talk to some of my friends about you."

So that's it.  That would be my one question if I had the chance.

Why God? Why make this lovely, innocent, caring bundle of love suffer?  What purpose does it serve?  What lessons are we or Kiefer supposed to learn from it?  How does this help us grow??

Parker and Blaine talked about their questions.  Parker wanted to know if we were alone in the universe.  (That's a good one)  Blaine wanted to know if he was going to be rich when he grew up.  Parker wanted to know what heaven was like.  Blaine wanted to know if reincarnation was really a thing.

Me, I kept quiet while I pondered it all.

What would I talk to God about for 10 minutes.

Parker talked about being scared to go to heaven because it was so long.

"Like we'll be there forever.  Like billions of years but we're only here for like a hundred - if we're lucky!  What are we going to do in heaven for a billion years?!"

And then I thought of a few.

What's the point?  Regardless of what you believe in...heaven, hell, reincarnation whatever.

What is the point of being here?  What is the meaning of our ever so short lives in the comparison of the grand scheme of things?  Parker is right.  100 years seems so insignificant.  So what's the point?

Then I thought back to Kiefer and his enormous heart.

And almost as I was thinking it, Kiefer spoke up.

"God just wants you be kind ... love people.  You be kind, you go to heaven and be happy.  You be happy here, you be happy there (heaven).  That's it.  That's all God wants."

It's kind of odd, but I honestly think he nailed it.

From the mouths of babes.

💗

Another change in our "normal"

I seem to be obsessed with the word "normal".  Maybe it's because there is NOTHING normal about me.  I mean right from birth.

I was born to a 16 year old mother who had a few too many drinks at a party and had sex for the first time.  Yup FIRST TIME.  She got pregnant and concealed her pregnancy from her parents for 7 months.  SEVEN MONTHS.  Finally they called her into their room to talk and said, "Look we know you're pregnant we just don't know how far along you are".  I can only imagine the look on their faces when my birth mom told them '7 months'.

My birth was quick.  I was born within a few hours.  They put my mother out for the final push and she never got to hold me.  I was whisked away as quickly as I had come into the world.  My birth mom only got to look at me through glass.  She changed her mind and wanted to take me home, but at only 16 years old, what was she going to do with me?  Really?

I was given up for adoption and placed into my family.  I couldn't have chosen better parents.

But that's not a "normal" story, now is it?

Kiefer was given a third medication to take, along with the other two he takes 3 times a day.  This new medication is a bedtime medication.  So he takes it after he's had three doses of 2 medications during the day.  This new medication is supposed to help further with the seizures, but also help with sleep.

If someone told me I would survive waking up through the night for 9 years I would have laughed in their face.  If someone told me, that I wouldn't get a full nights sleep unless I was on vacation without my kids for 9 years I'm not sure I would have had another kid to be honest.  I LOVE my sleep.  Always have.

But I wouldn't change having Kiefer for the world.

While my heart was breaking as we took another big step away from 'normal', Kiefer kept to his happy go lucky self!

We decided to visit Daddy after the appointment and he took us to the mall for lunch.  Kiefer didn't even care about the food - he cared about us - spending time with us and being the center of our focus.  Even if, for just a few short hours.

He comes with struggles, and makes me wonder what 'normal' even is.  But he has such a big heart, he loves everyone so unconditionally and he inspires me to be a better mom and a better person.
He has changed my life in so many ways and I would fight dragons for him.  He brings a joy to my life I didn't even know was possible.

So yeah, our 'normal' is anything but.

I may be a little overwhelmed, and emotional, but I still see that I am so blessed. 
💛

Caught between cursed and lucky...

I feel like most days are pretty normal.  I don't really think about being lucky and I don't really think about being cursed.  Life just is, and we keep on swimming.

Lately, I've been feeling cursed.  Like our life is so much harder than everyone else's.  I watch other parents with all their neuro-typical children and I can feel the envy rising.  It's not even in the things we work harder at, my dressing Kiefer, or doing up shoes, or helping out of the car or constant reminders to stay on task.  The endless reading (grade four and we are still working on grade one books) or homework, or extra learning he has to do just to stay 3 grades behind.

It's when I see Kiefer have a seizure.  It's when I watch 3 year olds get their next belt in taekwondoe in weeks and it takes Kiefer over a year.  It's when he's invited to not ONE birthday all year long.  It's when I see the look of annoyance on other kids faces when Kiefer forgets about personal space.  It's when I see the look of annoyance on other adults faces, sometimes even family.  It's when I hear the word 'stupid' in reference to Kiefer.  It's when I get back test results from Sick Kids that put his intelligence (for his age group) in the less than one percentile.  It's when other parents say to me, "oh ya we struggle a lot too" when talking about their neuro-typical kids.  It's when people assume public funding pays for most of our therapies.  It's when people assume we get a huge refund cheque from the government for having a kid on the spectrum.

Those are all the times I want to scream and yell.

THERE IS NO BIG CHEQUE!!!  (there's NO cheque)
WE PAY FOR EVERYTHING!!!
I HAVE NEUROTYPICAL KIDS - DON'T COMPARE THEM TO MY KID WITH SPECIAL NEEDS!!!!
LET ME POINT OUT YOUR KID ISN'T PERFECT EITHER!!
MY KID WILL SURPRISE YOU DESPITE WHATEVER YOUR STUPID FUCKING TESTS SAY!!!!!
I'M ALLOWED TO BE PROUD OF MY KID!!!!

How could you not be proud of this guy??

So there's where I feel cursed.  I desperately want Kiefer to 'grow out of it' and somehow magically catch up with everyone else.  I want his seizures to go away.  Mostly, I just really, really want him to be happy in his life.  tears 

And then I wait in line for an ungodly amount of time at Walt Disney World and Universal Studios and pass by another parent with two neuro-typical kids and one ... not.  One who can't even walk, let alone speak.  One who will NEVER get ANY level belt in taekwondoe.  One who will never read anything, much less than 3 grades behind.  One who spends way more time in a hospital like Sick Kids than we EVER will.  One who will never wrap their arms around their Mommy and say, "you're the best mom ever".

And all of the sudden I don't feel so cursed anymore.  All of the sudden I feel so fucking lucky my heart hurts and I feel the burning behind my eyes - but I don't cry - because I'm so fucking lucky.  I don't even deserve tears.

Every night as a part of the bedtime routine we do best and worst with our kids.  They literally will not let us put them to bed without doing it.  Only it's actually first best, worst, and then second best.  We want our positives to always double our negatives and we always want to end the day on a high.

So even though I live most days stuck between cursed and lucky - I know I'm so much closer to lucky.

Like a lot closer.  💗

There's something between us...

Kiefer and I drove down to see his neurologist from Sick Kids today.  Kiefer has been on medication since he was 18 months old to treat epilepsy.  Thankfully, his seizures have never developed into anything more than petite mal seizures - which to some people - aren't even noticeable at all.  Up until today, he's been taking a liquid form of the medication. The doctor informed us that if we could get Kiefer to swallow pills, there were much more effective options out there.  Thankfully, we finally made the jump and Kiefer is now able to swallow pills.  Well tic tacs.  Many, many, many tic tacs as practice.  We're hoping it will translate into pills.  :)

Kiefer's appointment with Dr. Langburt was at 9:40 am, forcing us to leave the house by 8 am and fight rush hour traffic.  We feel completely blessed that we have such world renown medical care just a short 1.5 hour drive.  Seriously.  No sarcasm there.  We are so lucky.  As we headed south down highway 400, we slowed to a stop, not only in rush hour traffic, but construction traffic.  I believe there are plans to widen the highway and in preparation for the widening, they are tending to all the bridges first.  As we were stopped, Kiefer played happily on my phone.  Giving him my phone is a win-win really, because it keeps me from being tempted to go on it while driving (even when stopped) and it keeps him busy.  As our car sat idle, I began to take in my surroundings.  Cars rushing north, farmers fields, a large cluster of trees in the not so far distance and a newly erected chain link fence along the side of the highway.  That's when I noticed a mother deer and her baby walking along the fence.  The mother seemed to be frantic.  Jumping and prancing back and forth.  And that's when I realized the baby was on the same side of the fence as the highway and the mother was not.  The mother kept travelling down the fence looking worried and the baby kept putting her nose up to the fence towards the mother as if to say, "help mom!"

If I wasn't in the fast lane, furthest away from them I might have stopped and tried to lure them to the end of the fence.  Turns out it's a good thing I didn't as the end of the fence was quite a ways a way and we certainly would have missed our appointment.

We got to our appointment without incident and Kiefer now has a new prescription for a pill form of the medication he's currently on.  It will save the messy measuring of the liquid and make dosage much more consistent.

But I couldn't stop thinking about this mother deer and her fawn.  I felt like her predicament mirrored mine perfectly.

Paul and I do everything we can to help Kiefer along, yet there's still something between Kiefer and us.  And try as we might, we cannot help him in all the ways we want to.  Trips to Sick Kids, specialty doctors and medical tests we have never even had done on ourselves, are the only ways we can help.  But we watch, like the mother deer, through a fence feeling completely helpless to REALLY help him.  We just want to be able to take his hand and lead him gently around the fence so he is free of all his encumbrances.  So he can run and jump and live the carefree life that so many other children seem to enjoy.  But for now, our journey involves this unseen entity that lives between us and the perfect health of our son.

It's difficult.  It's distressing.  It's painful.  And it's heart breaking knowing that you would die for your son, but yet, nothing is within your power to take away what ails him.

And let's go back to being lucky.  We are SO lucky.  Kiefer is one of the biggest joys we have in our lives.  He is, for the most part, a pretty healthy little guy.  He is friendly, loving and immensely loyal to those he loves.  Our family is blessed to have him.  There are so many more who struggle with so much more than we do. I see you in the waiting room at Sick Kids.  I hear you talking about the tests your child must endure.  I hear your child ask you how much longer you must stay in the hospital and when will they get to go home and see their siblings and play with their toys.  I feel embarrassed to be in the same waiting room as you.  Our troubles are so small compared to yours.  Yours are the big struggles and the big fears.  Those parents I see, I wonder where they get the strength.

For them, I pray your fence is never too big to guide your little fawn to safety.

The waves...

I started thinking about this blog more and more last night after my post.  I thought about why I started it, why I took a break and why I named it what I did.  I truly believe in my heart that our Kiefer is going to be happy in his life.  And I do believe he is going to create waves.  How those waves form, I'm not yet sure. Maybe he will open someone's eyes to what different can be.  I know he's opened MY eyes to that.  Maybe in studying him, his genetics and his condition some breakthrough will be made that will benefit many.  Or maybe, and I'm quite sure of this, he'll just be his happy go lucky self and every day he meets someone, and greets them with a smile and "hey how are you?" he'll spread a little more happy around this world that could totally use more of it.  Happy that is.  So while I initially struggled to come up with a title for this blog, after careful selection and reflection, I'm completely ... HAPPY...with what we chose.

I started this blog because I thought maybe sharing our experience with others might help them along their journey.  Kiefer's journey isn't a simple one - we travel two paths simultaneously.  We are going down the ASD path as well as the epilepsy path.  Neither path on it's own is easy.  They are both  fraught with struggles, therapy, homework, meltdowns, investments in time and great patience - and yet our little Kiefer has to travel them both.  He amazes me really.  With all he has to deal with - it's become his normal and yet he remains positive.  He still gets 'talking tos' about too many hugs and hands on - and let's be clear: hands on for Kiefer equals too much love.  Hugs and kisses to people that might not always appreciate them.  We're focusing on high fives and fist pumps but man that kid loves to cuddle!  I know it's the right thing to do - a cute little 8 year olds hugs are sweet ...but when he's 16 and hugging strangers...it's ...well... creepy.  But a small part of me wants to bottle up that innocence and sprinkle it on top of the world.  Wouldn't the world be a better place with just a little more innocence to go around?

Recently, we participated in a series of trials at Sick Kids hospital.  In the early days of Kiefer's diagnosis, I was frantically searching online for something or someone who could help us.  I stumbled upon Dr. Scherer - a doctor who was nominated for a Nobel prize in his work on Autism who works through the Hospital for Sick Kids in Toronto.  SURELY he could help us.  I emailed him in the wee hours of the morning, through my tears pleading for some sort of help, admitting I didn't even know what that help looked like.  He did take the time to email me back and point me in the direction of some resources.  He also informed us, however, his work was mostly to do around research and he wasn't taking on any more families at that time.  

Fast forward another couple of years, a barrage of tests including EEG's, CAT scans and more blood work than an 8 year old should have to go through, and we discovered that at the heart of Kiefer's diagnosis was a genetic disorder.  

When we got the news I felt numb.  I wasn't sure what to feel.  A part of me released 8 years of guilt.  That sushi I had early on when I wasn't sure I was pregnant, that slip down those couple of stairs, the stress I was under during the pregnancy, and the list goes on and on.  All of the sudden none of those things mattered anymore.  When sperm met egg his genetic fate was sealed and there was NOTHING that I did or could have done to change that.  I instinctively STILL feel guilt sometimes thinking maybe I should have taken more vitamins but then I have to remind myself it was all biology.  Nothing I could have done could have changed it.  

But then I think nothing I can do will ever change it.  It is in his genetics.  It's in his DNA - the very road map of how he is built and made and nothing I ever do will change that.  And it feels isolating and helpless.  

And then he looks at me and smiles and says, "Mom, you need a hug?" and stretches his arms out wide and gives me the squeeze that restores my faith in everything that he does and the waves I know he is going to create.  

So now I was armed with this new knowledge, I emailed Dr. Scherer again.  Kiefer's genetic disorder is extremely rare.  So rare in fact that there are only a handful of documented cases in Canada EVER.  Like in the history of documenting these things - a handful.  So Dr. Scherer emailed me back and said he would love to have us be a part of his trials and perhaps he could shed some more light onto our situation.  And in the grand scheme of things, studying Kiefer's genetics could help lead to a discovery down the road.  

We spent an entire day at Sick Kids answering questionnaires, doing tests, and then eventually doing blood work.  Let me tell you, the kids didn't even FEEL the needle - Sick Kids is so awesome!  It was a long day - and we have no results back yet - we actually have to complete some more telephone interviews - the process isn't even done!  But every little step is a step forward.  

After the trials we decided to do something fun with the kids - so we took them through China Town.  A walk right up Spadina - going into all the shops and malls.  The kids buying little trinkets and marveling like they were actually IN China.  Giggling about all the strange and exotic foods out on the sidewalk and even trying some treats from a bakery.  It was the perfect ending to a long day and all the stress of the tests and getting pricked with needles melted away to a distant memory.  

The waves are coming.  I can just start to feel the ever so slightest breeze against my skin.  I know those waves are on the horizon.  And they are going to be so beautiful.  xo

A long break...but here we are back at it!

It's been a long break since I've been on Prognosis Happy.

Kiefer is still our amazing little boy.  The resilient, easy going, big hearted guy we gave birth to.  He is progressing well through his therapy - both speech and ABA.  His medical condition progresses too.  Recently we have up'd his dose of valproic acid to include a lunch time dose as well.  So now we administer zarontin morning, noon and afternoon, as well as a valproic acid pairing with each of those doses.

Kiefer is now in after school taekwondoe and since they couldn't promise a 'consistent' administering of his meds we wait until he is home to do it.  (He LOVES taekwondoe by the way!!)  The benefits we have seen are that he is sleeping MUCH better - which makes for a much less tired Kiefer during the day.  We didn't realize how powerful the benefit of undisturbed sleep would be.  He seems to focus better during the day, sleep IN more (YAY!!! for sleep ins!!!) and that means we all sleep better.  HUGE benefit.

I've been going through my own health journey for the last year and recently it's come to a head.  Not really ready to share details yet, but I'm actually excited for what's in store and setting not only myself, but our entire family up for better health.  Healthier meals, more movement and a happier family.

Just a quick update for now.  When I have some time I'll share our recent experience at Sick Kids participating in a trial.

Thanks for stopping by!