Because today I need to vent.

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…

 

 

 

 

Comments

  1. Hugs!

    The friends thing is crazy, isn’t it??? The people I expected to be around the most disappeared, and people I barely knew became Angels to us.

    Stay selfish. You’re keeping your precious baby safe.

  2. Elizabeth says:

    Buddy! I just want to give you a hug. My life has been a little nuts these past couple of months, but it’s never to nuts to be there for you. I’m ready to be a better friend with kleenex, wine, food, an open house, whatever you need.

  3. Amy Welsh-Hanning says:

    I have a heart-baby, named Evan, too! He’s now 8 years-old and despite his many heart “issues”, he’s one of the happiest kids you’ll ever meet. Hopefully, our Evans can hang out one day!

  4. Ashley Coleman says:

    I could read your writings all the time. You should do a book for heart moms everywhere. I have no doubt your touching the hearts of so many with your words. Evan is so cute and Izzy is just growing up so beautifully. You should be a very proud mamma! Love you girl!

  5. Hi! I am not a heart mom, nor do I know you personally, but through Sharyn Brewer posting about you and your precious little man, Evan. I must address your ten things, though! 🙂

    1. Obviously I have never been in your shoes, but I can say due to working with various special needs kids, my dear sister in Christ, you are absolutely correct that you weren’t given a Mona Lisa of what you could and should expect. Czarina, I pray that minute by minute, hour by hour, and day by day that God impart wisdom, guidance, joy, and most of all peace to you in your lack of understanding or knowing what you might find around each corner in this journey with your precious Evan!

    2. I can ONLY imagine the pain and heart ache you experience in those situations. I have four children, all whom are adopted, as my husband and I aren’t able to conceive and I would have the same feelings prior to our adoption. In those times, sweetheart, I don’t think you are really being selfish ( as I was, whom was without child), but hurt and alone due to your angel’s condition and the lack of people around you who really get it. I know you don’t know me from Adam, but can I just say, I LOVE YOU! God loves you and He will NEVER leave you nor forsake you, Craig, Iz, or Evan! You and your family’s story have touched my heart in a very REAL way!

    3. Precious Father in Heaven,
    I pray for your continually healing hand to be upon Evan, as You are the only one who can fix this situation. Lord, we know not why these things happen, but I’m trusting You for peace, wisdom, guidance, joy, and love for the Hounsel family during this very trying time! We love you, Lord. I thank you for blessing Evan with a big sister, Mommy, and Daddy who love him unconditional and accept him as he is as you accept each of us.
    Amen

    4. I can only say I somewhat understand this. It bothers me that anytime I go somewhere and someone knows my children are adopted they ask about it and want to talk about it right in front of my children. I would love to meet Evan and don’t want to know anything about him or his condition. I just want to see what a handsome little guy he is and his adorable smile and share in your family’s joy of a special little boy!

    5. As I said before, I know you don’t know me, but I would love for that to change. I understand how hard it must be to feel alone in your journey and just want someone to truly be there for you and your family! I live in DFW and would love the opportunity to meet you and your family! 🙂

    6. Laughter is the best medicine! Laughter is good! I love to laugh! 🙂

    7. I would love to continue talking with you via e-mail, Facebook, or your blog. I also have a blog, if you wish to pursue a “relationship” I would love to give you the information and send you an e-mail invite, as it is private and open only to those whom I select.

    8. I would not call it a pity party. I would call what you described as a coping party! No one, other than God, your husband, and others whom have been in the exact same position as you have any idea what you are going through and the daily horror you live with. You need to cry, vent, and be able to express your feelings regularly, otherwise one day you will be so overwhelmed with emotion that you become a complete basket case. You need to be able to do so with out judgement or criticism from others, as well!

    9. OKAY this is the part I took the most problem with! I would not say you have slacked as a friend nor would I say you’re being selfish! I would say that you are tending to your life in a way that God would honor and that is Him first, then Craig, and then your children! Your friends will understand that you haven’t made events, but your “friends” will not! Do NOT beat yourself up for putting you precious angel above your friends on your priority list! This breaks my heart that you even felt the need to say that. You are NOT a bad friend!

    10. ABSOLUTELY! Do NOT ever stop asking, because as soon as you stop asking God stops hearing, because there’s nothing there to hear. Know that i am praying for your baby boy and the rest of you, as well. God hears your prayers as hard as it may seem at times, but try to remember that God sees the whole picture and knows all things. Keep trusting in Him! YOU ARE SPECIAL AND LOVED!

    May you and your beautiful family have a very blessed day!

  6. I can so relate.. I’m sitting here in tears. I have a heart baby too and my heart aches daily. This post rang so true for me. Thank you so much for sharing your feelings and thoughts… and venting. I truly don’t think anyone can relate except other heart moms sometimes. Sending you lots of heart hugs and prayers. <3