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.