All too real

Since being catapulted into the world of Congenital Heart Disease (CHD), I’ve met a community of women from all over the nation who have kids with some form CHD.

To say one form of CHD is more severe than another is like comparing apples to oranges.  They are all so different – just like each child.

One kid could have all the parts of the heart but a couple of parts may not work correctly.

One kid could have a hole or two…

One kid could only have half a heart…

But, each child faces the long journey of surgery, each parent struggles with the thought that their child may meet God much too soon, and each story is woven with prayer, hope, and faith.

I had the chance to meet another heart mom and her little warrior at the hospital Evan will be at after birth.  Her daughter has been in the hospital for 12 out of the 15 months of her little life.  Sweet Emma has a myriad of challenges that have left doctor’s scratching their heads trying to figure out the best plan of care for her.  But, her daughter is a fighter and she’s still here…laughing and smiling.

I began praying for another little girl who had a heart transplant about a year back.  I only started praying for her the past week or so.  And, today a post on her FB page revealed that she was slipping away.  Another Heart Warrior….who earned her Angel wings last night.

I cried for her and for her family…for all that were praying for her.  You don’t have to have a child with CHD to know the fear of your child dying…and the harsh reality that your child’s eternity is just moments away.

I’ve also met heart mom’s through the internet – whether it’s finding their blog and contacting them and then becoming cross country friends and email pals or from Facebook where there is page dedicated solely to mom’s who have been blessed with heart warriors.

You’ll often see posts of moms asking questions about the process of surgeries.  I’ll see posts about the long lists of medications, feeding tubes, and vents about nurses or doctors.  You’ll often see moms (such as myself) opening up about their fears for their children.  And, you’ll also see posts asking for prayers for their children about to go through a surgery, being in surgery, being ill, or just waiting for the next chapter to unfold.

You’ll often see praises, too.  Praises for healed or healing hearts.  Successful surgeries.  Successful days.  Those posts are my favorites.

You’ll also see posts about Heart Warriors who earned their Angel wings.  And suddenly the Heart Mama you’ve been praying with and praying for suddenly becomes an Angel Mama…I don’t like these posts.

It’s all too real.  All of it is.

I can’t believe I’m a part of this community.   I’m thankful to have found it but find it surreal every.single.day.

When Craig and I made the decision to carry this pregnancy to term – we talked about the possibility of losing Evan.  And yes…we talked about termination.  One thing I have learned is to never judge any one’s decision on anything until you’ve walked in the same path.  I never thought I – we – would every consider abortion.  But we did – because it was presented to us an option.  And after lots of thought and prayer, we knew that we had to give baby – Evan – every chance to fight.  He is our child.  He is my son…and just like Isabelle…I will do whatever it takes to make him well.  But ultimately, it’s God’s will and I’ll have to accept whatever it is….but know…it doesn’t mean I’ll be ok with God’s decision if that means Evan leaving us far too soon.

All too real.  This my reality.

Today, in my heart community, so many babies and children are facing stressful times today.  Whether it’s the painful realization that their child is not going to wake up, the unbelievable task of handing over their baby – some days or weeks old – to have open heart surgery – OPEN HEART SURGERY, some babies who have just gone through their surgery and their parents are waiting to see how they recover….because the worry and the fear aren’t gone when the surgeons are over….the fight starts all over again when their child has to pump his/her newly stitched heart….

All of it…too real.  All of the stories…hit so close to home.  It’s too much for me to even think that in a few weeks and months I’ll be asking – pleading – for the same things – for prayers for my Evan to get through each breath and asking God to guide the doctors, nurses, surgeons, asking Angels to comfort him, asking God to help mine and Craig’s faith to be bigger than our fear..

All too real.

Today, if you are praying for Evan and our family, please say a prayer for the other families and children that are dealing with the reality of having a child with a congenital heart problem.  Pray for healing, for comfort, for Divine intervention.

Today, stop before you raise your voice and lose your patience with your healthy child who is making a mess, making too much noise, or throwing a tantrum – and before you step in to discipline – stop and PRAISE God for that mess, the noise, the tantrum…because your child is here and healthy today.

Today, tell your husband or wife that you love them and that you appreciate them being a good parent to your child. Because you need your other half to hold you up in times of struggle – and be thankful you have someone you can cry with, someone to comfort you, and someone you can rejoice with.

Today, stop and look at the blessing you’ve been given. Stop and reflect on the trials you’ve overcome.  Don’t forget to thank God for both – the blessings and the trials.

It’s all too real – the hardships and the pain.  But, the joy is real.  And that’s what I cling on to everyday – that faith, love, hope and joy…those are real, too.

It’s all surreal so real.

 

Comments

  1. Great post! It it all so true as well as real. Continuing to pray for you and your family, especially Evan.

  2. I’m another “heart mom” (my son Caden had surgery at 5 days old for critical aortic stenosis and coarctation of the aorta . . . ) it really is crazy once your eyes are opened and you realize how many famlies and babies face chd . . . I will be praying for your little one and following your story!