My Saving Grace

Does it ever get better?

As tomorrow is the first official day of fall (today, if you’re reading this on September 23rd), I’m always reminded of four years ago. You see, right around this time, I was newly pregnant with Ethan. I was about seven weeks, I believe. I belonged to an April 2012 moms board, a board I’m still active on. The ladies were talking about their pregnancies and what they looked forward to. It was then I was introduced to Starbucks pumpkin frappuccino, something I hadn’t previously tasted before.

I wanted a Lion King theme for the nursery. I was going to dress him preppy like his daddy. Ethan’s nickname was PYT (which makes sense since I’m a lifelong Michael Jackson fan). I decided I was going to announce my pregnancy on my birthday (which I did), and enjoy a relatively worry-free pregnancy.

And then it all went to shit.

On his birthday, I’ll share more of Ethan’s birth. Today, I want to talk about something different.

What if Ethan lived?

He was born at 22w2d, too young to save by any hospital standards. My local hospital, Huntington Memorial, doesn’t begin to save babies until 23 weeks. At first I was angry, especially since a new report recently came how some hospitals are contemplating to start saving babies at 22 weeks.

Let’s just say for argument’s sake, Huntington did attempt to save Ethan at 22 weeks. Would I be okay with how he’d turned out?

Let’s be realistic here. When a baby is born before viability (24 weeks), the chances of a normal life are very slim. Normal as in no problems. No speech delays. No developmental delays. Nothing that could impair/impact his quality of life. The earlier a baby is born, the more at risk he is for severe problems at birth and later in life.

It’s a question I’ve been struggling with off and on for the past several years. If Ethan was handicapped in some form, would I be okay with that?

Now, let’s get something clear. I’m not saying I wouldn’t have loved him if he wasn’t perfect or I would’ve rejected him. That is so not the case. My argument is would I have been okay with how Ethan turned out, knowing the other option was death and letting him go peacefully and on his own terms?

You see, some parents feel they wouldn’t care and would’ve loved their child no matter what. I wonder about that. A special needs child requires a lot of care, sometimes round-the-clock. I applaud parents of special needs children and give them kudos upon kudos. They truly have a thankless job.

This blog post gave me a lot of perspective, particularly this quote.

And yet if there was one thing I’d want parents of non-special needs kids to know, it’s to please be aware that we — the moms and dads of those “special” kids — are hurting.

Yes, we love our kids.  No, we wouldn’t trade them for anything in the world.  But the love we have doesn’t take our pain away.  In fact, it just intensifies it.  Because we can’t take their hurt away.  We can try and try and try, and we DO, and it might even help a little, but we can’t make the pain that accompanies disability go away.

When you look at us like we are weird, when you stare and ogle, when you move your kids away from ours, or worse, NEVER include our child in your child’s activities, it’s like rubbing salt into our already raw wounds.

For my son’s ninth birthday, we sent printed invitations to school.  We invited the entire special needs class, as well as the entire regular class.  The invitations indicated that we were serving pizza and that families were welcome.  We wanted to make sure people showed up.  So we bribed them with free food.

Fortunately, all my son’s special needs friends came.  We have to stick together after all, because special needs kids don’t get invited to that many parties.

One boy from the regular class came.  One.

That’s enough to just break a momma’s heart right in two.

My anxiety directly correlates to Travis’ behavior.  When he’s doing well, I usually do okay.  When he struggles, I get worse.  I’m sure it could be defined in some complex mathematical formula.  All I know is that when he hurts, I hurt more.

And he always hurts.

I deal with guilt in a different way for Ethan. I often wondered if I could’ve held out a bit longer. If I should been more insistent on cervical checks from the very beginning, if I should’ve quit my job at the time…I’ll always wonder those things and wonder what could’ve been different.

In conclusion, while I miss and mourn Ethan something terrible, I’m glad he’s in a better place. I’m glad he will never know struggle, anguish, or pain. I’m glad he’s finally free.

Ethan stairway

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