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.  💗