Kiefer's Superpower

Today's blog post is written by my husband.  It was an email he sent me and I immediately wrote him back and said, that's the next blog post!  

Read below: 

I was thinking about Kiefer.  Through some miracle of sperm meeting egg, he developed a superpower.  We think of gene abnormalities as being something negative.  Many superheros go through a genetic mutation to become 'super-powered'. The Hulk, Spiderman, etc.  

That's what happened to Kiefer.  His superpower is kindness, endless capacity for love, giving without any need for reciprocity, and the ability to bond people together.  He is pure innocence.  He calls out language injustice ("language!"), heals broken days ("hug?"), and brings people together ("will you be with me forever?").  

It's not that he won't be able to have a productive, happy, adulthood...it's that we and others will judge him with our lens.  It is not he that's at the disadvantage, it's us.  We cannot understand his level of happiness and his desire to be around us.  He is more content than anyone I know.  He asks for almost nothing, he's happy with the smallest of gestures.  The question is not 'will Kiefer have a fulfilling adulthood?' the question should be "how can I be more happy and content like Kiefer?" 

I love him.  I love all his little quirks.  "Fun fact!", "Can I ask a question?", "Did you know...".  He's a walking encyclopedia of information and misinformation.  He's an interesting person and it's a privilege if you get to know him.  

The issues that I have with Kiefer, I've discovered, are actually my issues.  I sometimes lack patience, not because of him, because of everything else that is going on.  I sometimes get frustrated when he spills or gags.  Then I think, "really??  You're frustrated that his seizures made him spill milk?  You're frustrated his condition gives him a strong gag reflex?"  My lack of empathy surprises me and shames me.  

We still have to raise him to be respectful of social norms.  He needs to learn to be patient when he wants to share a fun fact.  He has to learn to be appropriate in a world where appropriateness is a nuance, based on calculating many factors to get it right (who's in the room, how close a friend/relation they are, what are the feelings and beliefs of the people in the room...)

As neurotypical people, our brains interpret so much of this virtually instantaneously allowing us to tailor our content to the audience. 

With Kiefer, it's just innocence.  "I like Maive.  I'm going to hug and kiss her and I'm going to buy her a diamond.  Because I like her and that's what people do."  

My pledge is to try and be better.  Understand that the issues, mostly, are mine.  That I'm tired.  I miss my wife.  I'm stressed about life stuff.  The other kids get it and I need to do better.  Kiefer is teaching me how to do better.  

I love you and I love us.  We are going to be great, all of us.  

❤❤

Prognosis: Happy is born

I've started this blog as a response to several people in my life urging me to do so.  It's been on my heart for a little while - but the fears of 'will it just be more internet noise' kept me from doing so.  Then I thought more about my 'why'?  Why would I start to write a blog?  Would it be for memories sake?  Would it be to capture those raw moments as they happen?  Or would it be to help others?  Sharing the process we are going through might bring hope, or at the very least information, for others looking for answers. 

When I came right down to it, I finally found my why:

 

 

 

Our Kiefer is why.  He's why we make the trips to Sick Kids.  He's why our therapy bill resembles a small mortgage payment.  He's why his brothers are so compassionate.  He's why we smile everyday.  He's why we work so hard.  He's why we play so hard.  He's why family matters most to us. 

 

 

Then it came down to naming the blog.  That's a little tougher.  My last blog I ended up going with One of Many Possibilities - only because our family is so dynamic, I'M so dynamic - I couldn't narrow it down to one passion or hobby. 

 

Now to Kiefer.  His teachers describe him as a 'ray of sunshine' and a boy who can always make you smile.  He is a happy boy.  He giggles and smiles easily.  But beyond that, he wants OTHERS to be happy.  At his preschool, recently, another boy was crying as his mother left.  It bothered Kiefer.  He went up to the boy and offered him a hug saying, "don't worry, Mommies and Daddies always come back!" 

 

His favorite colour is yellow - a ray of sunshine.  Always smiling.  He's our happy boy. 

 

Then I had someone ask me just yesterday, "I had no idea you had a special needs son.  How do you come into work everyday so happy?"

 

It was a nice question to be asked.  You're never sure what sort of image you are putting forth.  For me, I feel like I'm just trying to keep my head above water.  I do try to remember to be positive and spread joy as much as I can - but to be asked "how do you come into work every day so happy?" literally made my day as I am putting out there how I want to be seen.  Because the truth is I AM happy. 

 

So the name of the blog became obviously apparent, Prognosis: Happy. 

 

I am going to talk about our journey through the medical system with Kiefer and our struggles and triumphs with him.  But through it all there is one constant; we are happy.  Our boy is happy.  Our family is happy. 

 

Thanks for checking in on our first blog post. 

 

~Krista