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Don't feed me your hope

April 20, 2017

I have something I want to get off my chest and I KNOW other Mothers can relate.  

 

I was having a nice conversation with a friend of mine who is also a mother to a child with a special medical need.  Her child's situation is TOTALLY different than Avalyn's- so we don't try to swap stories, or relate one kid to the next.

 

But, what was interesting is that we both agreed on one thing that drove us absolutely crazy: patronizing optimism.  Now, you may have a different word for it, but it goes a little something like this:

 

Person: "Wow, did you hear that someone with Cystic Fibrosis lived to be 45 years old?!  They exceeded the current life expectancy.  Doesn't that make you happy?"

 

Me: ... *blank stare*

 

No.  It doesn't make me happy at all.  Before you crucify me, readers, let me explain why:

 

My husband is 41.  We have friends who are 35, 39, 45.... these are our peers.  If one of our peers passed away, I would be thinking that they left us too young.  I would be thinking about how much more "life" they aren't getting the chance to live.

 

This is no different for a person with Cystic Fibrosis, or ANY other life-shortening/threatening disease, being taken too young.

 

I don't care that someone beat the average life expectancy for CF sufferers.  It's still too young.  I want MORE for my daughter and for kids like her.  Until the average life expectancy of a CF sufferer far exceeds my own, it will never be long enough.

 

The other thing wrong with this statement (and other such "hopefully stated fun-facts") is that it shows that some person has clearly put a limit on my special child.  I can't tell you how many times I've wanted to yell out, "YOU don't get to make limits for Avalyn!  She has no limits!"

 

Look, just because my baby has an illness or a special need, doesn't make her less of a candidate for things in life.  If you've put a limit on my child, please don't show me how surprised you are when you realize your folly.  Don't be expecting that I've carried that same assumption.

 

Special needs parents are well aware of the limits our children have. We hear it from medical professionals, books, the internet and of course from that tiny, awful voice our own heads.  However, if we choose to believe that our children can and will do anything they want- then let us believe that.  We would hope that our friends and family would believe it, too, no matter how obviously our children are limited.  And when it does become glaringly clear- we know.  Oh, we know already and we don't need you to point it out to us or feel bad for our child.  

 

People aren't trying to be offensive or upsetting when they say things like this.  I know that It's quite the opposite.  I also know that it can be tough to find the words to say to a person who is dealing with something that you will never have to contend with in your life.

 

A loved one, a friend or even a stranger, who is just trying to find a supportive conversation point can stumble into these 'hope-making' statements.  I don't blame them for it, and I know they may never understand my feelings.  

 

That's okay.

 

Not everyone understands that Mothers and Fathers of chronically ill children hope in their OWN way.  We hope tomorrow brings a healthy day.  We hope there isn't a sick kid at the party next week.  Some parents even have to hope their child just makes it through the night.

 

Not everyone understands that the long future of our kids is filled with questions, unknowns and fear.  It's also filled with light and hope and beauty... but, is very tempered.  Yes, we hope they live full lives and accomplish their dreams, but we also know that a short life is probable.  

 

Not everyone understands that because of this, we must live by the moment; the good and the bad. Because if we look forward too much, we will be overwhelmed by unpleasant possibilities and will lose focus on what is right in front of us, right now.  Our child learns a new word and we laugh and then we cry; they are growing, they are growing too fast.  

 

It's okay, supportive people.  Go ahead and be excited about things in our honor.  It's great that YOU are invigorated by a piece of news... and the doubts or questions that you may have about my child and her future abilities are eased by something you heard somewhere.  But please don't offer the news to us with a hope that you've created.  We will decide how stories affect us. 

 

We will decide if the news makes us rejoice, or fold into ourselves despairingly.  A lot of times, it will do both.

 

So what should you say to me?  Well, ask me a question about HER.  Like, What is her favorite food?  Does she like your cat?  How did she get so damn social?  Just don't look at my child any differently.

 

Go ahead and ask me questions about Cystic Fibrosis if you want to. I really don't mind explaining what it is where you can donate.  But, when I'm done explaining, do me a favor; don't pity us.  Just continue to have any random conversations with me about childcare, the weather and the best places to shop.

 

Because- trust me- I think about her disease enough on my own time.

 

 

 

 

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