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!

All caught up...now what?

We're all caught up.  I've shared with you now all the posts about Kiefer's health that I had previously shared.

The truth is I haven't shared much of our journey with Kiefer publicly.  Not because I've wanted to keep it private - but mostly because I'm processing it all.  I didn't share because I still had my own questions - I didn't want the questions from others because I had no answers myself.  And quite honestly, I didn't want the pressure of following through with a million suggestions.

"Have you tried the keto diet?"

"Have you tried paleo diet?"

"Have you tried medicinal marijuana?"

"You know I saw a documentary on...blah blah blah"

"You should see this doctor I know"

"You should try this therapy my friend tried"

"Have you read any books?"

"Are you doing research online?"

"What therapies is he in?"


ALL well meaning.  All from a place of love.  But when you are bombarded with them - it's overwhelming and you just want to retreat.  You want to retreat into your warm bed, complete with magic covers, and cradle that little baby you brought into this world.  You want to bubble wrap him and protect him from the world that you are CERTAIN is going to hurt him.

I'm gearing up and getting ready to share more.  I'm sorry it's been a slow progression here on Prognosis Happy.  Our days are mostly normal.  We are one of the lucky ones.  We only have to visit Sick Kids 1-2 times a year.  We treat what we can, we work on what we struggle with and let the rest go.

We enjoy our happy little boy.

I hope to post an update about our medical situation soon.  For now, I'm logging off to spend some time with my boy, his brothers and their father.

Stay happy.  Stay healthy.

#focusonfamily

It's not fair...

Still doing a throw back - I started to feel a bit bitter about our situation.  I posted this on April 21, 2015.  

It's not fair...

My kids have this book called "It's not fair". It's really cute and show's just how silly arguments can be when you think something isn't fair. They actually love for me to read it to them.

 Why'd I get the smaller half?

 Why'd he get the bigger laugh?

 Why can't I have a pet giraffe?

 It's not fair!

 Why can't I have curly locks?

 Why can't I have my own box?

 Why now chicken pox?!

 It's not fair!

 You get to stay up late? I have to go to bed at 8!

 They said they would, but they didn't wait.

 It's not fair!

 Why don't you yell at her?

 Hey! It was my turn to stir!

 I don't know it's all a blur!

 It's not fair!!

 Why does she get new shoes?

 Why does my team always lose?

 It's not FAIR!!!

 ...and the book goes on. You can actually watch the whole thing here: https://www.youtube.com/watch?v=KoSUnJqJ7Yw

 The arguments coupled with the pictures seem so obvious that the claims these kids are making are just silly. Of course your team doesn't ALWAYS lose. Of course you can't have a pet giraffe!

 But as an adult we can get caught up into this "It's not fair" game too. I am so guilty of it myself.

 Why is their house bigger than ours?

 Why does he seem to make so much money and not really work that hard?

 Why do their kids get all the good grades? They don't even try as hard as my kids.

 Why did his kid make the rep team?

 Why are they still together? I worked harder at my marriage than she does...

 And the ones I myself get caught into:

 Why can't my child struggle less? Why does my child have to have this dreadful diagnosis? Why can't my kid sleep soundly through the night without these awful seizures? Why do I have to be the only one of my friends who has a kid who is "different"?

 IT'S NOT FAIR.

 I found my pregnancy journal tonight. As I read through it, I started to tear up. At the end of EVERY entry I wrote, "grow healthy and strong baby. Mommy will meet you soon!"

 All I have ever wanted for any of my children was for them to be healthy. And I worried about it. With every pregnancy. Every single piece of ANYTHING that went into my mouth was considered for it's nutritional value. I'm not saying I was perfect. But I considered everything. Down to not chewing gum because I couldn't find gum without aspartame in it.

 Why'd I have the kid with ASD?

 Why can't he be healthy and free?

 IT'S NOT FAIR.

 Seizures keep us awake at night,

 Every step ahead is always a fight.

 IT'S NOT FAIR.

 Every spare moment spent looking for a cure,

 Is what you're doing right? You're never sure.

 Only thing you really know, is your love is so pure.

 It's not fair.

Where to Next?

My Pause - I feel like I need to explain my pause in posting.  I was posting daily when I started this blog up.  Then something unexpected happened.  I started feeling all those emotions I felt back then - when we got the news.  When we started processing it all.  I was suddenly overwhelmed with everyday life and was having a hard time coping.  If there's anything you learn in dealing with a lifelong illness for your child, it's how to cope.  So I took a break.  I apologize to my readers for not letting you know.  I had to recoup and focus on the progress we have made.  Focus on our wins.  Focus on our family.  Thanks for understanding. 

Back to 2013...

We were dealing with a lot and I was trying to spend as much time on my family and my son as I could.  A full time working mom, it was a lot to deal with and take in.  My posts became more scattered as I went to appointments, fought for treatment, set up private therapies and pushed forward through the labyrinth that is our medical system. 

My next post was 3 months later in January of 2014 and you can feel just how overwhelmed I was here. 

FRIDAY, JANUARY 17, 2014

 

Where to next?

I’m not sure where to go from here.  It’s a place I’ve never been before and there are no directions on where to go next.  “Take each day as they come” is the advice given to me, but I’m one that likes to prepare.  What will I need?  What tools should I make sure I’ve got?  How do I prepare for tomorrow or tomorrow’s tomorrow?  What are my coping mechanisms if everything falls apart?  How do I put it back together again?  Most importantly, how do I make sure things are WHOLE for my son.  My son.  My SON.  Who, truly is, the centre of my universe. 

Back in November of last year, we were given the news that Kiefer, our four year old bundle of joy and love, is autistic.  It wasn’t shocking news.  We weren’t blown out of our seats surprised at the news.  We had him assessed.  We obviously thought there could be something up when we signed him up for the ADOS testing.  But until you hear those words.  Until a doctor looks you in the face and says, “well, yes he has come back as being on the spectrum” you just have all these hopes and dreams as to what your child’s life will be like.  And for us, for me, the hardest part is not knowing what the future holds for Kiefer. 

“Well, we can’t really tell you what his future will look like.  He is clearly high functioning right now, but sometimes those kids degenerate and become worse off.  Sometimes they ‘outgrow it’, as much as you can outgrow autism”

I spent two months not talking about it.  The odd question would come up and I would answer, well, we just got back a diagnosis – but I couldn’t even bring myself to say the word.  Autism. 

My head fills with thoughts like will he be teased in school?  Will he be an outsider always wanting in with the other kids?  Will he know he’s different?  Will he be happy?  Will he learn everything he needs to know?  Will he go to high school?  Will he go to college or university?  Will he get married?  Will he always need to live with us?  Will that be a burden on us or will it be okay?  Will his brothers see him as a burden?  Will he be NORMAL? 

There are no answers.  The answers I get are ‘we don’t know’.  No one knows.  Just take each day as they come to you. 

So the original future wedding I had all played out in my mind, Kiefer wearing a tuxedo and a figure of a woman all dressed in white, are dashed away.  But there isn’t a scary image left in it’s place.  The canvas is blank.  Empty.  Dark. 

We fear the unknown.  I fear it.  I fear it for Kiefer.  I want to gather him up in my big Momma arms with his “squeezy hug?” requests and his favorite books on animals and stuffy’s and protect him from the world that I’m terrified will hurt him.  That I’m terrified will crush his easy go lucky, carefree happy spirit.  The spirit that everyone loves so much about him.  That I love about him. 

I don’t know where to go from here.  The only thing I do know is every journey begins with the first step.  Please be gentle with us as our footing on this journey isn’t quite stable yet.