Double Life

I was going for a run in my neighborhood yesterday and I overheard a heated conversation between a couple I see my daily outings.  They wave to me and give me smile.  I always think, “Wow – they are such a great couple – and they get along so well.”

Then, I heard lots of yelling.  Crying from the woman.  Yelling from the husband.  Lots of numbers were thrown around…I think home girl spent to much on something.

It got me to thinking…the life I saw of them…and the life I mistakenly overheard.

It’s their double life.

I think all the greats have double lives.  I think Halle Barry is really a comic genius behind her normal drama roles.  I mean..have you seen B.A.P.S. What?  You haven’t?  Rent it now…it needs to be on your bucket list.

Greatest.Movie.Ever

Then there’s, Evie, living a normal teengage life…but really…an alien.

When I grow up I want to be an alien so I can stop time.

Le’ts not forget one of the greats…Jesse acting like she had it together…until Zach found her stash of caffeine pills.  “I’m so excited! I’m so scared!”

Go, Bayside Tigers!!

Double lives.

And I am not one of the greats…but I sure do lead a double life.  And so does my boy.

I really believe that if Evan didn’t have a cleft lip and palate, you’d never know something was wrong with him.  He’s my constant companion, so I recognize little nuaisances in him.  Breathing a little faster. Hands and feet cold and tinged blue.

But, if you didn’t know his story, I think you’d see a “normal” baby.

And that’s what’s so tough.  Evan leads a life at home with me and then a life out in the world.  I know how fragile he is.  I know how the common cold can land him in the hospital.  And sometimes, no matter how much I tell people how sick he is, they don’t believe me.  It’s hard enough to know that your child is sick…and then add on the bonus of having to defend his heart defect.

Yes…defend it.  I have to really convince people that he is so very sick.  The “he looks so healthy” is a hard one for me to digest.  I want to jump up and down and do a cartwheel and rejoice, “YES! Yes he is!”  But, at the same time, still dial it back and say, “But don’t touch him without washing your hands.  Was that a sniffle I heard?  Wait…are you sure you washed your hands?  Do you want to wear a mask?”

His double life.  He’s my superhero on the outside but has a heart made of krypotonite…that makes him so weak.

Then, there’s me.

My double life.

The smile I put on for everyone.  The life that seems to going smoothly.  The aura of “she’s got it together” – as I unload my stroller, my diaper bag, his feeding back, a cooler for his meds and formula, his oxygen monitor, extra blankets to cover up the car seat that smells like vomit – because yes – he’s thrown up again.

Inside, I’m aching.  I’m sad.  I’m frustrated.

Behind closed doors – I’m a mess.  There is a 100% chance that after his 4 month visit today I sat and cried while I held him when we got home as I replayed the words of our pediatrician, “Yes…he is behind in his gross motor skills.   We’ll watch him closely and therapy should help.”

My 4 month old isn’t doing a lot of the big muscle stuff yet.  Yes…I KNOW.  I KNOW he had heart surgery two months ago. But, when you’re a heart mom and you see your baby struggle daily just to breathe…sometimes you just want something to come easy for him.  I mean…isn’t the broken heart enough?

But, at his appointment, I said the right things…smiled encouragingly. “We’ll work at it.  He’ll get there…he’s been through so much.”

And then…20 minutes later…here I sit…crying as I’m typing.

No one expects me to keep it together all the time.  I understand.  Sometimes it’s just easier to put on the “face.”  My mom persona of “Ms. She’sHandlingthisReallyWell” instead of showing my other life…the heart mom persona “Ms. HolySh*tBallsThisIsEffingHard.”

My double life.

*Sigh*

 

Comments

  1. Also remember “Superman” led a double life…he was an ordinary man by day, a super hero by night. So are you, an amazing “Supermama” no matter which persona you choose to display. And from one heart mama to another, yes…thisiseffinghard.

    Heart Hugs…Janette ((mommy to Mason, HLHS))

  2. Ashley Villacorta (Hagler) says:

    Double life indeed and no one ever knows what really goes on inside of another persons household or mind. It’s definitely ok and in my opinion healthy to have a cry session. This is a great post. There are so many lives you can touch with your words. I pray for you guys often. <3

  3. i know it’s easier said than done, but try not to worry about his development. he will get there, really. at gabe’s 4 month well baby check he literally wasn’t doing anything. then at 5 months he had a follow up NICU appointment and they deemed him as being 1.5 months behind babies his age. and they made it even worse by saying things like “well, he’s 1.5 months behind. it may not seem like a lot, but babies this age barely do anything anyway so it’s really concerning.”. they referred him to different therapists, but i did decline due to a few reasons. fast forward 3 months and he is all caught up. open heart surgery takes a lot out of babies. after their surgery, the last thing on their mind is rolling over, grabbing things, etc. babies are smart, they are focused on the essential things, like letting their body heal completely after a hugely invasive surgery. don’t be so hard on yourself. you seem like an outstanding mom, and evan is alive and well. the milestones will come at their own time.

  4. There’s an old song by TwIla Paris called Warrior Is a Child that I always related to and it sounds like you do, too. It’s daunting being/appearing strong all the time. It’s a blessing and a curse in so many ways to have that ability to hold it all together. I don’t necessarily have advice, but wanted to let you know that I’ve been following your story and praying for you and your family. Hugs from a sister in Christ many miles away.