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.  💗