Sunday, April 19, 2015

This is how we do it

Dear newly diagnosed mom,

I know you. 
Well, I don't know you know you, but I know you. 
I've been you. 

You're sitting there, scared to death, trying to put all of this new information into your brain. You're trying to process how this is all going to work, how your new baby, currently growing away contentedly in your belly is going to come out and need to start fighting immediately. How he or she will have open-heart surgery at a few days old. Is that even possible??? 

Most of all, you're wondering how your baby will get through, how other siblings at home will fare, whether your marriage will survive…and how you will make it through. 

I know you feel alone.

We all did.

But you're not.

Somewhere along your journey, you'll realize you're not alone.

Maybe you'll be waiting to meet your surgeon for the first time, and a mama in the waiting room will see your swollen belly and will approach you. She'll tell you that the bright, thriving and busy boy running around the waiting room has the exact same heart defect as your unborn baby. 

Maybe you'll be watching your baby boy recover from his first open-heart surgery and you'll see another newly postpartum mama being wheeled in to the bed next to you to see her brand new baby girl, also awaiting open-heart surgery. You'll say hi and the tentative new bonds of friendship will begin.

Maybe it'll be years later and you'll be at the cardiologist's office with your thriving little toddler and you'll see a mom with a boy about the same age. You'll strike up a conversation and find out not only does her son have a heart defect, but they live 5 minutes from you.

You'll think all of these meetings are chance, just coincidences. 

But they're not.

Someday, you'll realize that these encounters, all of them, were there for you to meet your fellow heart mom, to be ushered into this amazing community of women.
Heart Moms.
We love each other. A love borne out of shared adversity, of triumph.

We're a crazy, usually way overly stressed out bunch. And we're all different - but we have this in common. We have BIG hearts. And we're scared most of the time. But we love each other and support one another unconditionally. 

We visit one another in the hospital, to give hope and love - and sometimes just a cup of coffee or a smuggled in bottle of wine. Or a confetti gun for a stir crazy toddler.

We text each other all the time. Sometimes little pictures of blue fingers and toes - are they too blue? Should I call the cardiologist? And sometimes they're so, so so much deeper. Our fears, our worries, the things that keep us up at night that must be shared. And sometimes they're triumphs. The first word, the first step, the preschool graduation announcement.

We meet up. We drink wine. Sometimes lots of it. And that's ok. 

We laugh. Big, giant belly laughs. And we cry. Deep, heart wrenching tears of fear and of loss. Sometimes in the same night. And that's ok, too.

We're all a part of this sisterhood of heart mamas. 
And we're stronger, and braver, and better for our part in this sisterhood. 
And you, newly diagnosed mama, are a part of us, too. 

You may not know it yet. 
But you are.
Because this is how we do it. Together. 

Tuesday, April 7, 2015

The HOPE Project

I met a newly diagnosed HLHS mom a couple of weeks ago, when we were up at CHLA for a pulmonology appointment. After our conversation, she said how nice it had been to meet Bodie, that one of her greatest fears for her unborn baby boy is that he will feel sick all the time and not get to participate in stuff because of it.  

Her comment really stuck with me. I thought of my Bodie, and the crazy ball of energy that he is, and how he just LIVES his life. How he has this big huge thing that makes him different from a typical kid, but how, other than taking his medications, he doesn't really live like he's any different. How his differently shaped heart is just one thing about him, like being short or dark haired on another kid would be. How he's a little quiet and quirky at first, and how you might think he's kind of reserved (which he definitely was the morning we met this mama). But how, once he lets you in, he's just straight up goofball and really funny and quirky and wonderful.

I don't think he feels like he misses out on life because of his heart. I asked him the other day if he thought about his heart much and he said "yeah. it's cool." And I asked him if he remembered his surgeries and he said "no." And then, obviously DONE with our boring conversation, he ran off to play.  

This last weekend, I've been pondering this question, and observing him and taking lots of pictures of him. And he certainly looks like a kid enjoying life, a kid who's not missing out.

So, no, I don't think he feels like he doesn't get to participate in life. 

But then, I'm not in his head. I don't know how he feels. And, admittedly, I'm not the most unbiased person when it comes to how "typical" his life is. But, darn it, I'd sure like to be able to give his mama, and others like her, a serious dose of hope. I mean, something other than a biased mama's perspective. 

So, here is my question for my blog readers. If you know us, if you've met Bodie and had a chance to interact with him, would you mind commenting on this blogpost? Maybe a little background of how you've interacted with Bodie (church, school, AWANA, family, friends, just watching me chase the little bugger around, etc.) and then what YOU think, in YOUR opinion about his life. Does he seem sad or like he's missing out on anything? Does it seem like he lives a pretty full life?

(I'm sure the answer to this question will change as he gets older and becomes acutely aware of what his special heart will mean for him. And for Dusk and I, as his parents, our challenge and our goal will be to help him embrace what he CAN do and not what he CANNOT do. But I'm asking the question about right now. Right this second. What you've seen of our boy. 
Because this mama, and the sweet one I met at CHLA two weeks ago, really want to know the answer.)

Wednesday, April 1, 2015

April Fools What?

Today started innocuously enough, with me telling the kids Spring Break had been canceled because "everyone is just too far behind in their work to take a whole week off of school" (I'm not a prankster by nature, so they bought it hook, line & sinker - their expressions were priceless in that 15 second window before I shouted "April Fool's!!!").

And then, it started. The silly Facebook posts about being pregnant ("Ha! April Fools!") and then friends outside of Facebook.

And it IS funny, don't get me wrong. 

It is funny (to me at least!) to think of friends unexpectedly pregnant again!

But it's more than just funny.

It's painful. 
Straight up really painful.

It's hard to explain to someone who hasn't been there. 
But if you've suffered from infertility or pregnancy loss, you get it. 

It's not funny to see someone joking about being pregnant when you've been trying forever and it feels as though your family will never happen.

It's not funny to hear about someone else having an "oops" when you know you'll never have an "oops" where you get to bring home a healthy child and your biggest concern is where you'll fit that child into your family space. 

After pregnancy loss, you are forever a mixed ball of emotions when others announce they're pregnant. It's super fantastic. Really.

Excitement, of course, for me, is always the most prominent feeling - I am thrilled for my friends when they announce they're pregnant. I mean, it's one of the great miracles of life and how can I not be thrilled for them? I am. But my excitement is always tempered with sadness, with jealousy, with a realization that, again, my life is not "normal" and my body's ability to reproduce and bring a kiddo home is not "normal." 

Most of the time I'm ok with that. 7 pregnancy losses later and I have gotten used to that feeling. We all have things about our lives that aren't perfect, that aren't the way we imagined they would be when we envisioned our futures. And that's ok. Life takes its own twists and turns and the joy in life is seeking out the beauty in those twists and turns. Focusing on what we don't have will always make us more miserable than focusing on what we do have, plain and simple. 

I wanted a big family. Instead, I have 2 of the most amazing children I could have ever imagined, one of whom is medically fragile. And I know this path was God's plan for our family. So I am grateful for that. But there is always a twinge of sadness for what I had envisioned. I'm only human, after all. 

And so, when someone announces their pregnancy, I always go through a roller coaster of emotions, and typically settle in at excited, with a twinge of sadness from time to time. I can work with that.

But then, on April 1 every year, there are always friends who think it's funny to post a fake pregnancy announcement on Facebook or Twitter followed with "April Fools!" or tell you in person. So, I get to go through that roller coaster of emotions, but in a 30 second window - over and over again all day. It's pretty exhausting, to be honest.

So, if you're thinking about posting a fake pregnancy announcement today, do it if you must. I mean, there is a component to it that IS funny. I get it, I do. But, if you have someone in your life who is going through infertility or has experienced a pregnancy loss, please think twice. 

It is not YOUR responsibility to make sure I don't take this too seriously. I get that. I need to put on my big girl panties and not get upset about this kind of stuff. BUT, sometimes pregnancy loss is something that takes more than big girl panties to deal with. Sometimes, it takes an extra ounce of grace and compassion from those around us as well.  If you have some of that extra compassion and grace to spare today, that would be flipping awesome. 

And, you know, if you simply must prank someone today, put saran wrap under the toilet seat or clear nail polish over the soap bar instead. Because that stuff, folks, is straight up funny.