Accidental Purpose

Because today I need to vent.

May 16, 2012 By Czarina 3 Comments

Sometimes it’s hard to explain what we’re going through to anyone who doesn’t have a heart baby.  Everyone has been so kind and their words of encouragement, prayer, and positive energy have filled our home with hope.

But, living it day to day is extremely difficult.

I have been thinking about our life and future a lot lately – too much – often forgetting about today.  Here’s some things that have been weighing on my heart…I hope those of you that read this just see this as an outpouring of my soul..and let’s leave it at that.

1. “Messy paint job.” – A heart mom made the comment,”I knew it would be difficult…but I don’t think ‘they’ did a very good job painting a picture of how hard it would really be.” This is harder than I ever imagined. You know how hard it is to worry about your child dying…even from the moment they take their first breath?  There isn’t a day that goes by that I don’t rush to Evan’s bedside to see if he’s breathing.  I listen to his *broken* heart everyday – and when the stethoscope touches his chest – tears start to fall.  It’s not the soothing sounds of *LUB DUB LUB DUB* but swooshes here and there.  I can feel his heart beating when I place my hand on his scarred chest…and ache knowing how hard his heart must be working just to be here with us.  And I cry even harder than in the near future, his beautiful chest will be opened once again for his open heart surgery.

2. “Green with Envy” – I am jealous and really don’t want to be.  I would never wish this journey on anyone…it’s too difficult.  I feel my stomach turn into knots when I read about a baby being born healthy and his/her mom gets to hold them right way.  I feel sick with jealousy when I see babies taking bottles.  I was at church this past weekend and there was a baby dedication.  I started to cry as I watched the families at the front of the congregation showing off their kids and everyone praying for them.  I peeked in on Evan – sitting in his stroller – covered with a blanket to shield him from sneezes and coughs – and thought…”Those kids are healthy…everyone needs to be praying for my son. My son that is so sick…”  Here’s the worst….I get jealous of Heart Babies with “less severe” heart defects.  Now that’s ridiculous and I know it.  Any baby that has to have open heart surgery is obviously very sick.  Of course, there are some defects that are much more severe – like my Evan’s – but even the “simple” ones (which there really aren’t…) affect each family the same….we all worry about our children surviving.

3.  “No easy fix” – Please don’t tell a heart mom, “Well…they’ll be able to fix it.”  You know how hard that is for us to hear? I know that sometimes that ‘s all people can say….it’s their way of offering encouragement.  But, when we hear those words…its makes if feel like someone can just put a bandaide over their sick hearts and call it a day.  When we know that our babies – our babies – have to have open heart surgery, deal with recovery,and then have a life filled with close monitoring by a cardiologist.  And the future for our heart babies – God willing they have a successful surgery – is either a) a heart that is functionally normal with no more intervention b) some part needs replacing…which means another surgery c) the heart that was once ok…no longer works…and a transplant is the only option

4.  “Not heart related but still hard to hear” – When people meet Evan, I feel like I have to give a long explanation.  Talk about his heart and about his cleft.  Explain his “nose noodle” aka feeding tube.  I can’t just show them my boy and call it a day.  I know I’m bias, but Evan is perfect to me.  He has the biggest, most contagious smile.  So, when someone meets him and says, “He’ll be SO cute AFTER his surgery to fix his cleft.”  it’s like they just slapped me in the face. Really?  Because, I think he’s pretty darn cute now.  My boy has taught me to see others through the eyes of Christ – no judgement.  I am able to see others – all of our differences – as beautiful, unique masterpieces.  So, please…learn to see my boy the same way…because he’s perfect NOW.

5. “Be there” – Please stand by us friends and family.  Be here for us – in prayer and in person.  Are our lives too hard for you to deal with – even for just a brief moment?  Suck it up.  Because in the darkest moments is when those who love you  shine the brightest.  I don’t know how I would have made it through Evan’s heart surgery without the friends – that I can count on on my hands – showed up.  Showed up with phone calls, text messages, hugs, prayers.  They cried with me.  They made me laugh.  They showed up and held me up when I had nothing left in me.  There are no words to explain my gratitude to them and no words to explain the pain I (and Craig) feel for those that weren’t there for us in the darkest moment of our life.

6.  “Let’s laugh” – As serious and stressful as our lives are – I appreciate more than anything – the gift of laughter.  I think laughing just reminds me that someday things will be ok.  Someday…no matter what happens…laughter will just be a part of my day and not something I long for.

7. “Talk to me” – Talk to ME.  Not just the me that’s a heart mom.  I think that this applies to moms with heart healthy kids, too. This heart journey and my role as a heart mom is a part of who I am not the definition of who I am.  So, let’s not exhaust our conversation with talks of Evan.  If it’s ok, let me lead the conversation.  If I need to talk about Evan, please let me.  Ask me about the things that we used to talk about pre-heart baby – like sports, movies, reality T.V., recipes.  Talk about you…I still want to hear about your day, your life, your problems, your struggles.  Just please don’t compare your child getting diagnosed with eczema with my child getting diagnosed with a heart defect.  I know it may still be hard for you…but it really isn’t the same.  But, I remember – pre-heart baby – how it feels to lead a normal, healthy kid life – and the struggles that came with that – tantrums, colds, etc – and I want you to feel comfortable talking about you with me…because I need to be the friend to you that you have been to me.

8. ” If I want to have a pity party – ask what you can bring – don’t ignore the invitation.” – Sometimes I need to cry.  Ok – a lot of times I need to cry.  Sometimes I want to feel sorry for Evan, for Iz, for Craig, for me  There will be times I think about the worst case scenarios.  So, let me have my pity party – I promise it won’t last long.

9.  “Sometimes I need a little more slack.”  – I’ve sucked as a friend lately.  I know.  I’ve missed funerals, birthday parties, showers, weddings..and I’ll miss those things as long as I have to for Evan.  A good friend of mine said to me at the beginning of this journey “You need to be selfish right now.”  And I have been. Completely wrapped up in my world.  I really do think I’m getting better, though.  I feel more confident in my ability to juggle real life and heart life.  But, just because I’ve sucked as friend and our lives may not intersect right now…please continue to be our friend.  Invite us to parties, to get togethers….and be ok if we decline.  Know that we want to be there…but for now…we have to say no.  If I don’t return a call, a text, an email, a FB message – don’t take offense.  Sometimes – I just don’t know what to reply.  Sometimes I’m just tired.  Sometimes I don’t want to be reminded of my struggles.  And yes…I want you to still be there for me even if I haven’t been the best friend to you. I know – it’s a double standard. But know, if you ever go through something like I’m going through – I’ll be the first person knocking at your door with a casserole, a box of Kleenex, and a hug. But also know, if you don’t ever go through something similar to what I’m going through…it doesn’t matter to me…I will still be there for you because I know how hard it is to look around and wonder where your “friends” are.

10. “I’ll never stop asking for prayers because the Heaven’s will never tire of hearing them.” – So, if you get irritated or annoyed with my requests to pray for Evan, I’m sorry.  Delete me as a friend on Facebook or in life.  Stop reading my blog.  Because, prayer and faith is what we’re clinging to to get through the day.  Prayer works.  I know it.

 

Whew…

 

 

 

 

Progress

May 9, 2012 By Czarina Leave a Comment

Today at the grocery store, I ran into a friend I hadn’t seen in a while.  She’s been following Evan’s story and praying for us every step of the way. We made small talk and then she asked the question, “How are things going?” I’ll be honest…I loathe and fear this question.  It’s so broad…and [...]