Me and a village.

You know the saying, “It takes a village to raise a child.”

Yeah..I believe it.

I had lots of help with Iz when she was here.  Help from family.  Help from friends in the form of comic relief fueled by vino.

But, now that I have Evan, my incredibly special baby, “village” has a whole nutha meaning.

Today was one of those hard days for me.  One of the ones where I put Evan in his crib, let him talk to himself, and give myself a time out.

I get on the internet and check out Pinterest.  But, quickly leave the site, realizing I have over 10 boards and at least 160 pins…and none of it has been attempted.  I don’t want to feel even worse, you know, since I didn’t make a beautiful holiday wreath out of a lock of hair, a toothpick, and empty medicine bottles or create a snack for Iz that also doubles as a toy airplane and Shamwow.

I’m surrounded by people.

My family.

My friends.

Evan’s doctors.

Evan’s therapists.

My virtual friends.

And the voices inside my head…kidding….sorta.

I see someone daily for Evan – his feeding therapist, a doctor, his physical therapist, a bill collector.

I almost always make contact with Craig.  I see him daily…and we exchange niceties…

Me: “How was your day?”

Him: “Good.  How was yours?”

Me: “Good….I showered.”

Him: “Sounds like you did a lot, then.”

God love that man.

My friends and I make the effort to see each other.  The ones that are left – still send me texts and call me – every now and then.  We always keep up on Facebook.  I sometimes feel I don’t need to ever leave my house since I get to see their lives chronicled on the internet with blogs and status updates.  Granted – I shove my face with ice cream as I read about their latest trip – in public!! – see pictures of them with their kids without hand sanitizer sticking out of their purses and diaper bags, and a genuine smile on their faces – true happiness – no facade.  Jealousy reeling.  But, the envy passes quickly…the few that have stuck around after the storm, well , they are my life line…meaning…they drink with me in public and don’t care if I ugly cry in front of them.  They give me hugs and say the best things to me, “I have no idea what you’re going through.  I’m so sorry.  Let’s get another glass of wine.”

Then, I have the villagers of the medical team.  The ones I talk to to write me another prescription, write me letters of medical necessity for something extra Evan needs that insurance won’t pay for, the ones I ask to make diagnosis of symptoms over the phone so I don’t have to go into a cesspool of germs that is a doctor’s office, the ones that hear the sound of my voice when they pick up the phone and my voice sounds like nails on a chalk board.  Yes, I know they love to hate me.

I turn to my e-friends.  The villagers of my Heart Moms online.  I don’t know who to turn to a lot of days – like today – but them.  They know exactly what I’m going through.  It’s weird and little creepy to e-cry to strangers.  I accept e-hugs.  I take advice from complete strangers who have suddenly become my extended life. A life punctuated with LOLs, LMBO, OMG, and emoticons.  My safe place where I can tell them stories about me getting thrown up on, taking off my shirt, cleaning up the mess completely topless…with my blinds completely open and the nice family next door gaping at my National Geographic milk makers…that are covered in baby throw up.  And they don’t judge me…well…no one comments that they do….so it must be.

All these people – I’m surrounded by them.

But today, as I watched blood gush from Evan’s nose because he pulled out his feeding tube, frantically trying to stop the bleeding with sterile sponges while he thrashed about, as my dogs escaped the barricade and ran to try and “help” – aka sniffed my lady parts as their tails went in circles – so excited with all the commotion, deciding if I should call 9-1-1, call his cardiologist, call his pediatrician, call his plastic surgeon – or better yet – get them all on conference…I felt suddenly all alone.

Just me.

In this place called the Heartland.

Where I worry about a bloody mouth and the fear of infection that could spread to his heart.

Where I don’t know why I have to be surrounded by villagers that have to track Evan’s every step, if he’s crawling, if he’s eating, if he’s – well – just doing the normal baby things that he’s supposed to do – with an abnormal heart that I hope and pray is doing all it can to give us another day.

Where I can’t just love my boy and have a normal day – a day where I’m not counting every milliliter of fluid intake, a day where I’m not calculating diaper weights, a day where I laugh off spit ups instead of panic that it could be so much more.

Just me.

It’s a lonely place – this motherhood bit for a child with special needs.  So many people surrounding you to help make your everyday with your special little one.  So many people rooting for you to succeed.  So many people praying for my boy all the time.  The whole village – raising my boy.

Yet…I feel so alone.

It’s isolating.  No one truly “getting it.”  You don’t want people to “get it” but I sure as hell wish they would imagine my life for a minute.  Stop for a second and just try to picture this place I live it.  Then, I want them to go back to their world….because I don’t wish this life on anyone.

Because honestly, I don’t wish it for anyone, because this life was meant for me.

My boy was meant for me.  Out of all the babies up in Heaven…I got my Evan.

So, it may take a village to raise him.  It may take the village to get him to his best self.

So, I’ll never be alone…even if I feel like it most days.

I have my family, my friends, the Heartland…and my boy.

And, he’s the best part.

 

 

Comments

  1. Czarina – your post really touched me as I’ve had all those feelings, still do have them, and I’ll probably struggle with them for a long time. With Caylen’s problems going beyond her heart, beyond medical to dealing with sensory and ADHD, with people not understanding, or even trying to understand, leaves me feeling like I spend most of my life defending my child, trying to change how people treat her, trying to figure out how to help her. I know you know how this feels, too. I would trade my daughter for anything, I wouldn’t trade the heterotaxy and all the other problems if it meant not having her. Watching her struggle and suffer breaks me in ways nothing else can. But the love I have for her, and her for me, is the greatest blessing that I have ever known, beyond salvation. My heart goes out to you, and many prayers are going up for you, Evan and your family. Hang in there, you’re an amazing mommy and Evan is couldn’t have a better one! <3

  2. Buddy,

    I am proud to be a part of your village.

    I don’t “get it” and honestly don’t think I could handle it. I think you are amazing and want to be a better friend to you. I can offer and ear, Fransia and Fresca whenever you need it!

    EP

  3. You are so strong and so honest ! You are right I can’t even imagine everything you go through on a daily & nightly basis…. You are AMAZING ! I miss you ! I would love to see you whenever you want/can ! Love and hugs !! Jo