Ethan

Remembering Ethan

The build-up to his birthday is always the hardest. This year has been incredibly difficult because having a preschooler is one more reminder of what could’ve been and what currently isn’t. I know it may sound weird and I don’t sound like I’m grateful for Bear, but I am. I thank God every day for Bear. But I also wish Bear had his big brother.

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The pain of losing a child is something I wouldn’t wish on anyone because it stays with you forever. Some women never recover. Some never have any more children. IMG_1457

I love you then. I love you now. I’ll love you forever.

 

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Why Mother’s Day is Still Difficult for Me

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First Mother’s Day with Bear.

Over the last two weeks, I’ve been bombarded with Mother’s Day as I’m sure the rest of the country, if not world. Mother’s Day sale here. Mother’s Day deals there. Mother’s Day in my inbox. Mother’s Day when I turn on the TV.

Mother’s Day. Mother’s Day. Mother’s Day. (For a surprising history of lesson of how it got started, click here.)

I should feel excited. I am a mother. This is a holiday dedicated to me. I’ve been celebrating my mother for years and now, I can share a holiday with her that’s for us!

And yet, I don’t feel that way. Not even close.

My first Mother’s Day was in 2012. It was supposed to be my first Mother’s Day. Ethan was prematurely born and died in 2011 and I spent Mother’s Day 2012 with no baby to show for it. I celebrated International Bereaved Mother’s Day instead but it was still somber.

When Mother’s Day 2014 rolled around, my mother declared it was exciting because it was my “first official Mother’s Day,” completely ignoring the fact I had a son before Bear. I quickly reminded her it wasn’t my first Mother’s Day and left it alone.

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And it’s just…unless you have a deceased child, you don’t understand.

There’s always the feeling of something, someone missing. Sure, I can have all of the spa days, nice jewelry, breakfasts in bed, etc. on Mother’s Day. And I’m sure those days will come in the future. But I’m always going to remember there should be an extra person celebrating. And he’s not here with me.

I take comfort in having a strong family and friend support, both here and offline to help me through the day. While it hasn’t been as bad as I thought it would be, it hasn’t been Mushrooms & Roses, neither. And that’s okay. It’s a grief I’ll have for the rest of my life.

Every Mother’s Day, I try to find some articles online that bring me some comfort. This year, I’m sharing them with you in case you need comfort on this day.

Being the Mother of a Child Who Died on Mother’s Day.

The Land of Not OK (she refers to her disabled son but it also applies to bereaved parents as well). This is one of my all-time favorite articles because it explains what I live with everyday.

To all of my angel mamas, you’re beautiful, blessed, and loved. If the world ignores you, I’m here for you. To my rainbow mamas, celebrate your Mother’s Day with your rainbows as you remember your angels as well.

God bless you all.

For Ethan

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My Dearest Ethan,

Not a day that goes by when I don’t think about you. You were originally scheduled to arrive in April 2012 but you made your appearance on December 13, 2011. It was the most wonderful two hours of my life and I will forever cherish your birthday.

I often wonder what type of toddler you would be right now. Would you be like your little brother who is very precocious and full of energy? Or would you be more reserved and observant? What would be your favorite color? What would be your favorite cartoon? Would you have liked ice cream? Would you have been picky about eating veggies? These are questions that I will always wonder.

Your short life changed me in so many ways and I wonder how different things would be now had you survived. I also wonder how things are in heaven for you and if you have plenty of friends and family watching over you.

I recently got a tattoo of your handprint inside my arm to match the one your Daddy has on his back. Now whenever I look down at my arm, I can see you’re always with me and it gives me some peace. I always knew you were with me.

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I hope you are having fun in heaven and I can’t wait to see you again. I love you to the moon and back.

Love You Always,

Mommy

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.

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