“Be Happy He’s Alive”

Why do people think this is an appropriate thing to say to a preemie parent…or any parent?

“Be happy he’s alive”

Why?!  Why?!

It’s NEVER, EVER, EVER…Okay.

It’s like dumping a huge tar and feathers bucket of guilt over someone

Do you know what preemie parents (and all parents) have too much of?  Guilt.

For some, it’s all-consuming, for others it’s quietly nagging at the back of their mind and jumps up on occasion.  For me, I’d say it’s mostly at the back of the mind but there are certain triggers.  Like when I get frustrated with Kellen for talking too much and just wish he’d be quiet…”for, like, 30 seconds…can I please get 30 seconds of silence”.  And then the little guilt devil in me pops up and says, “you should be happy he’s able to talk.  He has words and he has a voice that fully projects (albeit, sometimes too loudly).  Don’t you wish Owen could do those things too?”  Guilt.  My other guilt Achilles heel is breast-feeding.  I see someone posting about the benefits…most likely they are being informants and not intending to judge…and I feel judged.  I tried so hard with both of my boys to very little success and then with Owen my breast milk nearly killed him.  He acquired CMV from me…from the minuscule amounts of breast milk that I was able to give him.  CMV caused his intestines to perforate and is likely what caused his PVL.  Yea, that’s a tough one.  I feel guilty that I couldn’t give it and I feel guilty that I gave it.  If that’s not enough, I also feel guilty that I’m letting myself feel guilty.

Rational?  Nope.  All consuming?  No, I don’t think about it most days.  Hurts like hell?  Yes.

Those two guilt-triggers, make me get down for a few minutes and usually result in a bit of a self reprimand or a quiet pity party.  However, when some says,

Be happy he’s alive

I come out swinging.

Here’s why.  There is not a day in my life..actually, there are very few minutes in my life that go by without my being thankful that both of my sons are alive and doing well.  They both had scary births (Kellen, Owen).  The only way I got through Owen’s first year of life is because I reminded myself that I was lucky to spend 2/3 of the year in the hospital and that I was lucky to be so damned tired and that I was lucky that Owen had a future for me to worry about.  Many times, every single day, I thought “why is this so hard?” and then I’d remember all the babies and moms I knew who didn’t get the same opportunity as Owen and I and I’d stamp the fact that my life had its own challenges into the back of my brain to fester.

So, yes, remembering that I should be happy that Owen was alive was what got me through that first year…however, it wasn’t healthy.  Every time I said it to myself, I was beating myself up.  It wasn’t me taking a moment to appreciate what I had.  I was taking a moment to punish myself for admitting that my circumstances were hard.  It was a self-lecture that I didn’t have a right to complain.

I don’t deserve to be punished for my children living.  That punishment should not come from me and it definitely should not come from anyone else.

I do deserve to celebrate their life.  It is my responsibility to appreciate what I have and what my children have.  I understand I can create my own happiness and sometimes the best way to create my own happiness is taking a moment to acknowledge that not every emotion I feel is happiness.  Sometimes I might even need a wake up call that I’ve been too negative.  If you need to give that wake up call, feel free to point out that I’ve seemed down lately.  Maybe ask what you can do to help, but do not admonish me by reminding me how close I was to losing my son(s).  I promise you, that is a fact that I can never forget.

Popular Cliches Translated

McCloskey

Say What?!

Sometimes the really nice thing you meant to say, isn’t what I heard at all.  If you just used a cliché, that’s probably especially true.  It, in all honesty, is a two-part problem.

First there’s me. I’m what Ellen over at Love that Max, calls a warrior mom.  Nearly all mom’s battle for their kids; special need moms battle for their kids almost every day.  That makes me a little defensive.  Then throw in that the reason my son has special needs is because my body failed him.  (That’s not guilt speaking.  That’s truth.  Owen was born more than 15 weeks early because my body failed at being pregnant.)  This truth adds some fragility to my mindset.  Whether I know clichés are intended as good or not, there is always this part of my mind that also sees the negative in them.

The other part of the problem is that clichés have become…well… very cliché.  They are used when people don’t know what else to say.  So, they pull out something they’ve heard before and hope it fits.  At best they are empty words.  At worst, if you really think about the words that are in clichés, they often say exactly the opposite of what is truly meant.

So here it is, my really honest breakdown of some of the most frequently used clichés and my positive and negative interpretations of them.

Cliché:  “He just wanted to come early, didn’t he?”

What I am pretty sure you meant:  “Wow, he was incredibly early.  It’s really hard to wrap my head around a baby this small.  This is scary but I’m going to keep up my hope for you.”

What I couldn’t help but hear:  “This is all his fault.”

Cliché:  “This kid has really put you guys through the wringer, hasn’t he?”

What I am pretty sure you meant:  “Your family has been going through an unbelievably difficult time.  I don’t understand why these things happen, but I hope it gets better for you soon.”

What I couldn’t help but hear:  “He is bad”

Cliché:  “When I’m having a tough day, I just think about you guys and know I have a lot to be thankful for.”

What I’m pretty sure you meant:  “I really admire your strength and positive attitude through this difficult time.  You’re a great example of finding the good, even during the hard times.”

What I couldn’t help but hear:  “Your life sucks.  I wouldn’t want to be you.”

Cliché:  “This has been a real roller coaster ride, hasn’t it?”

What I’m pretty sure you meant:  “Your family has been through a lot of ups and downs.  I hope it’s more ups than downs soon.”

What I couldn’t help but hear:  “Wahoo, let’s go to Six Flags!”

Cliché:  “These things happen for a reason.”

What I’m pretty sure you meant:  “I don’t know why these things happen, but I do believe you have the power to make the best out of a difficult situation.”

What I couldn’t help but hear:  “Your son is the sacrificial lamb of a lesson you needed to learn”

I’m sorry if I just rained on anybody’s parade of best lines to use when someone is going through a difficult time.  It’s important to emphasize that I have zero ill feelings towards anyone that has said any of these phrases to me.  I do understand it’s hard to know what to say and I can interpret the positive intentions.  To make it even trickier, this is MY list.  We all have our own list.  Here is one Jessi wrote over at Life with Jack (I agree with many of hers, by the way).

You’re probably reading this and thinking, “but what should I say?”  Here’s my advice 1) say something and 2) make it come from your heart.  What comes from your heart may be, “I have no words.”  And that’s okay.  I’m 21 months in and just at the beginning of finding some words on this specific subject.  It’s hard to know what to say.  However, I know I couldn’t have done it without so many wonderful family, friends and strangers with supportive words and actions that came from their heart.  The heart is always wiser than a cliché.