That Little Soapbox!

     I am not one to let what others say about having a CHD child effect me.  I usually chalk it up to an educating moment.  I understand that CHD isn't in the spotlight like other defects and diseases.  So I try to be more patient when someone wants to tell me why they think I birthed a child with a Congenital Heart Defect.  

However over the past few months I have conversated with some folks that have flat out accused me of this or that.  These folks have implied If I'd taken better care of myself during pregnancy, she wouldn't have been born "messed up."  At those particular times I was so devastated and hurt to the core, I simply walked away.  I said nothing, walked away and let tears stream down my cheeks.

     Unfortunately a bit of time has passed and it is still bothering me.  I so wished I would have stood tall to these folks and spoke the truth.  Even at the risk of exposing my emotions, and letting someone witness the tears streaming down my face. 

So to help myself gain closure I will say what I should have, and wanted to say during those moments.  

"I appreciate your theories but, let me take a minute to help define a few things.  I did everything by the book, during my CHD daughters pregnancy!  I DO NOT smoke, I DO NOT drink, I ate the best foods I could when I wasn't suffering from nauseousness.  I DID NOT take any medications, except my prenatal vitamins. I AM NOT obese, I AM NOT diabetic, and I DO exercise several times a week.  

So you see your theories of congenital heart defect children being born to Mothers who don't take care of themselves due to this reason, or that, is completely inaccurate!  So I'd appreciate it, if you'd educate yourself before you start making judgements, and preaching to me that her defect is somehow my fault!"

     Thank you for letting me clear myself of this.  My hope if someone, someday, has a conversation on this topic you can pass along some facts.  As I've said before.....we all need to constantly bring awareness and education to people about Congenital Heart Defects!

Blessings Until Next Time!

Drena

Becoming A Heart Mom!!!

     Being a parent of a special needs child I am always reading and educating myself on anything I can get my hands on.  The more I can learn and teach Cora about her heart defect, the more educated she will be about her body.  I always tell my girls: Knowledge is power and the only way to gain knowledge is through educating!

     So....as I was researching and reading the other night I came across a beautiful poem that expresses what I feel as a Heart Mom.  I read and cried all by myself, realizing everything in this poem is exact.  Please take a minute to read the poem below.  It will give you an inside look at me....and other Heart Mom's around. I love you Cora!

The Day I Became a Heart Mother

One day my world came crashing down,
I'll never be the same.
They told me that my child was sick.
I thought, "am I to blame"?
I don't think I can handle this.
I am really not that strong.
It seemed my heart was breaking.
I have loved her for so long.

I will not give up on this child.
I will listen to your advice.
I will give my child any chance.
No matter what the price.
I will learn all that I need to help my child thrive.
I'll even use that feeding tube.
My child must survive!

Will she need a lot of therapy?
Will she gain the needed weight?
Please God, help me do this.
I will accept our fate.

When the monitors beep at night, it serves as my reminder.
How many parents would love that sound.
Tomorrow I will be kinder.
As another Angel earns his wings,
I run to my child's bed.
I watch her sleep for quite a while.
I bend down and kiss her head.
I cry for the parents whose hearts have been broken.
I look to You wondering why?
Oh Lord, I just can't know your ways....no matter how I try.

And yet, I trust you hold her life, and guide us through each day.
My mind says savor each moment she here,
but my heart begs, "PLEASE let her stay"!

From pacing the surgical waiting room, to sitting by her bed.
From wishing for a good nights sleep, to learning every med.
From wondering, "will she be alright?", to watching her reach out her hands.
With every smile my heart just melts, despite life's harsh demands.

For all who see that faded line.
I look to them and smile.
You see my child is loved so much.
I would face ANY trial.
That scar I trace with my finger (It's the door to her beautiful heart).
God must have known how much I'd love her (Just as He loved her from the start).

A heart mom is always a heart mom.
Now wise beyond her years.
For those who have angels in heaven,
Our hearts share in all of your tears.

Every day I will try and remember,
I was chosen for her (and no other).
I will always embrace that beautiful day.......
When I became a "Heart Mother".

- Author Unknown

Blessings until next time!

Drena

    

   

    

 

Changing View Points.....

      All those who are parents know that being a parent can be challenging, stressful, difficult, and demanding.  Being a parent of a Congenital Heart Defect child is all those things and more.  I found myself, as a parent of a CHD child, advocating 24/7 trying with my every blessed day educating people in some way.   It is a tiring, long process but, I feel my daughter, and other CHD children deserve it. 

   

     With that being said I stopped writing and blogging a few months ago. I decided to take a cibaticle from writing and advocating as a parent.  I decided to take a step back and see life as my daughter sees it. 

      Over the past few months, walking in my daughters shoes, I have discovered more about not just my daughter, but what life is like for her as a CHD tween.  I thought my heart ached for her before......my mind was blown by my discoveries.

      It amazed me how uneducated children are when encountered with diversity, and discover one of their peers has special needs.  The disconnect from The Lord and the word of God!  The boldness children have speaking freely in front of others, oh yes including me....Cora's Mom!

     Hearing children speak less than pleasing words to my daughter has been a huge pill for me to swallow.  Momma bear has wanted to come out when I have been a witness to these conversations.  But I literally bit my tongue and waited for Cora's reaction and responses.

     It is appalling to have been a witness physically and emotionally to these children who speak inconsiderately and disobiently.  The one that has stuck with me the most and makes my stomach turn and my body cringe is : " You will never be normal.  You are damaged goods Cora.  No one will ever want you."  

     I can't believe young children speak that way to others and have no moral issues with the cruelty seeping from their mouths, or the verbal beating they are giving to another.  That day my heart broke.  I wanted, as a grown woman, to grab that child and smack their mouth, and pray scripture over them.  I looked at my dear daughter, my miracle God gave me, and saw her glassy eyes as she let these children speak.

     I stepped forward not able to allow this to go on anymore, but Cora looked up at me and with her beautiful blues eyes pleaded me to stop.  With that I watched my daughter respond to those awful, awful words.

    She stepped closer to this child and proceeded to respond with more grace than I have ever seen a 12 year old have.  I could see she was upset, and broken by these children.  But I also saw God's grace working through her.  Watching per center herself and gain a little control her quivering voice spoke magic to my ears.  Cora didn't put down those children, or call them names.  Instead she informed them that she was God's miracle and her scars are not just proof of that, but they are also God's love.  It was so beautiful.  The unfortunate result was that those children didn't really listen to her, or care what she said.  At that moment the gears in my head shifted.

      Maybe I need to change my coarse of educating?  Maybe I need to be educating all these children instead of the adults?  What if all the advocating I have been doing was really for nothing, because those parents I have spoken to deeply advocating for CHD didn't seem to take the time to teach their child.  

      With CHD's killing more children than all childhood cancers combined. We need to educate and spread the word about Congenital Heart Defects, and get some funding to research this defect in more depth.  So I will continue my advocating for the hope that I can touch just one parent, or just one child.  That maybe I can plant a seed within them to carry and later to share their new knowledge with others.  Spreading Congenital Heart Defect Awareness!!!  Maybe then....just maybe, the experiences my 12 year old has faced thus far in her life with her peers, will cease to exist!!!!!

Blessings until next time!

Drena

     

CHD Advocating!

      Who doesn't support their child in life?  I am sure no one, right!!!!!  How about advocating?  You say what's the difference?  Well....Supporting means willing to donate money, time, knowledge, as long as its a good cause.  Advocating is someone who speaks or writes in support of defense of a cause, or person.

     Advocating is so important for different causes, right?!  How else will you spread the word?  So why is advocating so important to me?  Congenital Heart Defects are!!!!

     My daughter was diagnosed with a severe Congenital Heart Defect (CHD) in utero, 12 1/2 years ago.  When my husband and I were given the diagnoses about our unborn child, I had absolutely no idea what it was, or what effects this heart defect would have on my child once born.  Sure I had heard about a lot of diseases, even childhood diseases, but nothing about CHD.  It amazed me to learn very early that 1 in EVERY 100 babies are born with a CHD.  It also blew me away to learn that Congenital Heart Defects kill more babies each year than all childhood cancers.  Even the weight of my child at birth has an affect on her life span. 

    How many parent to be, or new parents do you think about this? Not many if any at all I'm sure!   These were just a few things I discovered while pregnant.  As my pregnancy continued and my unborn child was diagnosed with more and more obstacles I realized something very important......How many more parents are going through this and are absolutely caught off guard and uneducated about Congenital Heart Defects?

     As my daughter has grown and encountered so many obstacles, health related and social, I have discovered she needs an advocate!  As her parent, I strongly feel that everyone needs to realize that children with Congenital Heart Defects may have some serious obstacles.  Some they many never be able to overcome, but if people aren't educated about this disease it won't ever be given the attention it needs and the funding for research to aide in assisting future Congenital Heart Defect children!  

     So I close with this very important question to you personally.  What are you advocating for, and how has it touched your life?

Blessings until next time!

Drena