“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.

Owen’s (Third) Letter to Nasal Cannulas

Dear Nasal Cannulas,

It was two years ago on Father’s day that Dad and I were in cahoots and we pulled the ventilator out.  Okay, maybe it was a scary accident to Dad, but I knew what I was doing.  I was through with that vent…well, at least for a week and then I got sick and needed it back, but that’s not the point… the point is, I know when I need help breathing.

Over the last several weeks, I’ve made it abundantly clear to Mom and Dad that I didn’t need help breathing anymore.  I kicked and screamed the minute you touched my face and I proved I can whip you out of my nose and on the floor faster than I can crawl away when Mom is chasing me through Kellen’s floor hockey practice (and that’s pretty fast, just ask any of the onlookers who were giving mom the “wow, he’s a handful” looks of sympathy…hahaha).

I made it as clear as I could to Mom that it was time to call the doctor to have my overnight study, but she’s got this fear of bad news…something about being afraid of jinxing positive momentum.  I mean seriously, she gets all cautious because she’s haunted by that first year, but I keep showing her in every way…I’m just not that same kid anymore.  I’m stronger now and this face is waaaayyyy too cute for a harness on it.  Those dang glasses are bad enough and at least they match my baby blues.

So anyway, this letter is getting a little drawn out…kind of like our two-year relationship…so let me put it to you as simply as I can.

I PASSED!  I PASSED!  Naa Naa Nuh Boo Boo!  I don’t need you!

Oh, and to your little friend pulse oximeter (that stupid monitor that mom punched a time or two…or more).  I quit it too!

Booyah!  It’s good to be a free man.

If you missed Owen’s previous letters to nasal cannulas, you can find them here and here.