Encephalocele

Hi, The Band!

*waves*

It is I, Your Aunt Becky, here with another installment of What's Up Around Band Back Together.

I got my Hello Kitty bowl on the ready, have indicated to the roadies that I'd like some more PURPLE not BLUE M&M's, and am ready to rock and roll!

I'm also going to make this a little more personal.

If you're not aware, June is National Infertility Month, and that's why I've made the decision to thrust Infertility into the spotlight for our Spotlight Series.

Here are some IF-related prompts:

• Is someone close to you struggling with infertility? How do you support them?
• How did your perspective on infertility/fertility treatments change once it began to affect your life?
• How do you feel about high-profile cases in the media that involve infertility or fertility treatments? (Nadya Suleman, Giuliana and Bill Rancic, Mariah Carey etc)
• Do you feel jealous/envious of the new parents in your life? How do you deal with it?
• What does your 'perfect' family look like? How many kids?
• Infertile couples often want more than one child. Are you struggling with secondary infertility? What is that experience like?
• What phrases or questions really push your buttons? (Either for being too invasive, too insensitive or something else)
• Do you have an inspiring/hopeful story of overcoming infertility? What was it like?

Also, tonight, our #withtheband Twitter party, which runs weekly from 7-8CST will be run by our lovely Silverlily, one of the devoted Brains Behind The Band who helps run our Twitter account.

P.S. You should come volunteer with us! Email volunteer@bandbacktogether.com

If you've never joined us before, tonight's a great night to try it out - we're always giving out prizes and it's a great way to connect with other people who have IF/loss in their lives.

Remember to tag your tweets with #withtheband and follow us:

@bandback2gether

@BrainsofBB2G

-------------

As a part of the Resource Page Team, I've tried to make a number of Infertility Related Resource Pages:

Infertility

Loss

Recurrent Miscarriage (RPL)

Miscarriage

How To Cope With Infertility 

Secondary Infertility

Endometriosis

Ectopic Pregnancy

Please, The Band, I'm begging you - let me know what other resources I can create for IF and loss!

---------

*cue lone guitar solo*

Now, those of you who know me know that I have three kids running around my house, stealing my Purple Skittles. So why would someone like me feel it necessary to make infertility such a big deal?

Because I have roots. Roots that involve both infertility and baby loss.

When I started my second blog, Mommy Wants Vodka, most of the parenting blogs I read sounded like a badly written Palmolive ad - parenthood was rosy, if I was having struggles with something in my life, it was probably because I was a shitty person and should have my kids taken away from me.

So I fell in with the motley band of misfits known as the IF and/or Baby Loss bloggers. It was there that I felt at home, there where I formed my first real connections, and these were the first friends I'd made in the blog-world.

They were there when I admitted to struggling with PPD, then PTSD. They were there when my daughter, who was, by all accounts, developing normally, was born with a bit of her brain hanging out of the back of her head. Surprise!

Encephalocele.

The IF and baby loss bloggers, they were the ones who understood the torture of handing my newborn over to a neurologist, unsure if she would live or die. They filled my inbox with so many emails, emails that sent me love and light, holding my hair from afar. These people understood that there was no such thing as a "sure thing" or a future with certainty. They, too, lived in the fringe of statistics, knowing what it feels to fall on the wrong side of right.

They continue to be some of my dearest friends. I know, without a doubt, that I wouldn't be here, if they had not supported me.

When the idea of a group blog rolled around in my mind, I'd originally set the scope small: it would be a group blog for IF bloggers, baby loss mamas, and parents of children with special needs.

That was, obviously, too small. I hate being exclusive - if I was going to make a group blog, it damn well better be open to all.

I did, and I have. I've seen so many stories; new topics, different types of dark subjects that I've had to frantically scramble to throw together resource pages to keep up with it all.

(Let's just pretend that all I do is sit around watching dancing snails videos)

But through this journey, as my blog grew and as Band Back Together grew and morphed over time, I know that I will never forget where I came from. Ever.

So to you, my dearest of friends who have supported me time and again. To those of you whose tables are forever missing one. Whose backyards long to hear the sounds of children giggling and laughing. Whose office-turned-nursery fills with dust and frustration. Whose pee sticks will remain white. Whose heart will never feel whole, it is to you that I dedicate this month.

You have given me a kindness I cannot repay.

But I'll be dipped in shit and rolled in flour if I don't try.

So please, The Band, can you help me get the Band Back Together for Infertility and Loss?

I rarely ask for promotion (and I never beg for donations, no matter how broke we get) - but this time, I'm going to ask for your help. It's time to give back to those who helped me through my very darkest of days.

It's time to get the Band Back Together.

Sometimes, we at the Band know that part of owning who you are is admitting it to the world. It's one reason why we at The Band work tirelessly to break down stigmas and find the ties that connect us all, the ties that remind us that we are none of us alone. Please join us in standing tall and proud as we tell the world who we are.

What are you, The Band, The Face Of?

***

"They look like white elephants," she said.

"I've never seen one," the man drank his beer.

"No, you wouldn't have."

"I might have," the man said. "Just because you say I wouldn't have doesn't prove anything."

- Hills Like White Elephants, Ernest Hemingway

It starts with the nightmares.

Night after night, I'm stranded in airports I've never visited - some exotic, some rural - malls I've never seen, always looking for someone whom, in a dream-like way, I know is looking for me, too. A particular someone - someone I've never met, but someone whom I chase night after night. I have a feeling I'd know him if I saw him, but really, that could be a lie.

It feels silly to admit that I spend my dream time not eating marshmallow fluff, but looking for a particular person. I'd much rather be saving the world while I sleep than sorting through the faceless masses at fictional airports.

Once the dreams begin, sleeping becomes fitful, if not impossible.

I've not won any sleeping awards since I got my thyroid regulated (I HAVE A GLANDULAR PROBLEM), but during these patches, it becomes nearly impossible to drift off. When I sleep, I run, I chase, and I wake myself weeping into my pillow or moaning in sadness. By 9AM all hope of rest gone; I slog my soggy ass out of bed and pretend that I remember what it's like to sleep.

I'm functional for a few weeks like this - groggy, with slowed reflexes - but because of my usual rate of unintentional self-injury, no one notices anything is amiss.

It's only after a few weeks, months, I don't know how long, that I start to crack. The anxiety becomes too much. Things I would've normally found hilarious - my neighbor's tree, for example, which looks like it's growing a full set of knockers - don't even elicit the barest of smiles.

I want so desperately to reach out, to connect with someone, anyone, but I can't bring myself to do it. I can't bring myself to admit that it's okay to be weak - that I'm allowed to not understand my feelings. It's then that the voices of those whom I once loved echo through my head and I begin to doubt. Everything. Myself. My ability to function in everyday society.

The echoes of things once-said flit through my mind. "I can't handle your problems right now," my ghost-husband says. "You're a liar," my ghost-brother says. "Take down that story about the rape or I'll take action," my ghost-ex threatens.

My world becomes smaller, ever smaller, as the PTSD rears its head. It leaves me gasping for air, for straws, for any reason as to why there's a 9,827 pound white elephant on my chest while the rest of the world seems to be breathing air like it's no big deal.

I wonder what is so fundamentally fucked inside my head that I can't manage to beat this PTSD. My daughter lived; I have countless friends who'd gnaw off a couple of legs to say the same thing. So why am I so fucked? Why does rubbing my hand along the plastic implant inside her skull make me break out in a cold sweat? She squeals and laughs runs and plays and kicks her brothers with wild abandon, while I sit trapped on the couch, my windpipe unable to properly move air into my lungs.

And those words, those words like white elephants, are trapped in my lungs; they remain unspoken.

Yesterday, at 4:28PM, my daughter turned The Big Three.

Ordinarily, this would be cause for some sort of celebration - one only turns three once, after all - but this birthday, this birthday was special.

Not just to me, but to each of you, The Band.

For without this tiny girl, curls like a halo, wisdom far greater than any three year old should have, there would be no Band Back Together. Without her, there would not have been that tiny spark of inspiration that came to me in the middle of the night - "I should create a group blog for each of us to share our stories of darkness and light."

Without this tiny girl, The Princess of the Bells, I would simply be another humor blogger in an oversaturated sea of blogs.

Without her, you would not be sitting here, reading these words - a real band now - able to seek comfort in each other. Able to see that, for the first time (perhaps), you are not alone in the world. That we are all connected.

And that, that is a cause for celebration.

Happy birthday to you, my Princess of the Bells, the one who showed me the light, changed my life, and touched countless others.

That is a birthday worth celebrating.

And this little light of mine, may it always shine - on you, on me, on us all.

It's been a long time since I thought about those first few days with my daughter. Actually, that's a lie. There's not a day that goes by that I don't think about the encephalocele, that pesky bit of brain matter growing out of the back of her head. The still-growing scar on her misshapen skull makes damn sure of that.

It's always peeking out, just below her curls.

I wonder what she'll think of that, someday, when she realizes that she's not quite like the other kids. I know there will come a day where she hates it, another when she accepts it, and another when she realizes just how grave a situation it was...and what a miracle it is that she is still around today.

I know enough, thanks to my nursing background, to know what an absolute miracle it is that she's walking around, talking, and demanding that I paint her bedroom pink. Not a day goes by that I don't thank her for showing me the way, for helping me find my light, and for using that light to help others.

She's the reason we, this Motley Band, are here. She's the sole reason that this site, which has helped so many, exists. Without her, I'd just be some blogger with a blog that I use to pontificate about the underrepresentation of kumquats in today's media. I'd still be Your Aunt Becky, but I wouldn't have done this. Any of this.

In her short life, she has altered the path of so many. In her three small years, she has done so much more than I ever will.

While I could sit here, raging against her birth defect - which has given me a wicked case of PTSD - I don't. I celebrate it. I celebrate that one tiny bit of brain that has changed the course of my life forever.

Today, I ask you to share your stories of birth defects, birth trauma and birth injury. There are so many of us out there in the shadows, waiting to share how their lives have been changed with a few small words, a diagnosis.

The greatest stories remain untold, of course, not from a desire to tell them, but from a lack of an understanding ear.

In here, in this cozy library, fire crackling in the background, as we sit on overstuffed leather chairs, we are ready to lend you our ears.

Please help me put the spotlight this January squarely on birth defects, birth trauma, and birth injury.

January marks the first of our Spotlight Series, and we're choosing to honor Aunt Becky's daughter, Amelia, who is the sole reason that The Band exists.

Amelia, like so many of our children, was born with a birth defect called an encephalocele. She's gone on to vigorously beat neurosurgery and the odds stacked firmly against her.

So it's time to Band Back Together for Birth Defects. Share your stories. Tell your tales. We need to learn about the birth defects that have touched YOUR life. Let's rock out and tell the world OUR stories.

It's YOUR turn, The Band!

With eight tiny words, my world changed:

"Becky, there's something wrong with your baby's head."

You'd expect something more profound, more eloquent, more something to change everything, but no. My world shattered. Her life potentially in peril. Everything was the same. Everything was different.

It was my New World Order.

My daughter was born, January 28, 2009, with a previously undiagnosed neural tube defect, an encephalocele, and while most children with these birth defects pass away before or shortly after birth, my daughter lived.

She survived neurosurgery and has gone on to beat the odds. She is also the reason that Band Back Together exists. In her short life, she has done more good than I ever will.

What better person to kick off our Spotlight Series than someone who has so vigorously kicked ass, taken names and inspired so many?

This year, we here at Band Back Together are doing something new. Each month, we're going to ask for submissions about various topics (we're going to get the schedule together and put it on the sidebar) we'd like to shove into the spotlight.

Throughout that month, we'll post each of your stories. We'll also have a mid-month blog carnival showcasing some of the most varied stories. If you'd like to participate, simply submit as you normally would, just add "birth defects" somewhere in the title so we can make sure to get 'er up.

In honor of my daughter, Amelia Grace Sherrick Harks, I'd like to kick off our very first Spotlight Series by flinging the spotlight squarely upon Birth Defects.

So please, share with us your stories about birth defects - any birth defects. Congenital heart defects. Neural tube defects like Mimi's. Spina bifida. Cleft palate. Cystic Fibrosis. Down Syndrome.

We want YOUR story. We want to pay tribute to those of us who have birth defects and those of us who have children with them. Bring. It. On!

So, The Band, let's rock out for Birth Defects this January!