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.