CHD Awareness Proclamation 2014

      This week is Congenital Heart Defect Awareness Week (Feb. 7-14), and I am so proud to share our highlight of the week!  Last evening Cora and I were welcomed guests at the Amelia Village Council meeting where the Mayor, Mr. Todd Hart, called my Cora up and read her a very important proclamation.  The village of Amelia declared Congenital Heart Defect Awareness for the week of the 7-14th, and encouraged all Amelia residents to join in the special observance!

     I was so proud of my Cora, who didn't want to go up in front of everyone!  She handled herself well and smiled beautifully!  I of course did my thing!  I gave out a few brochures and stickers and quietly supported my CHD daughter!  It was her moment.......a moment for her to feel special and proud of who she is!!!

     My challenge for each of you is spread the word.  Tell someone about CHD awareness week!  Share this blog, tweet a short message, share coffee with a friend and mention the importance of educating and research for CHD!

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

    

   

    

 

My 1 in 100!!

     I have shared so much about my Cora and our highs and lows, never taking a moment to gloat about my daughter!  Just a everyday Mom sharing her love for her daughter!  So here I am ready to gloat about my girl.  Here is my Cora Evette.  My oldest daughter, who will be 13 on the 23rd, is happy sweet and so giving.  Cora Evette IS MY 1 in 100!!!!

Blessings until next time.

Drena

Kicking off 2014....CHD Style!!!!

     Happy 2014 to you!!!  I am excited about 2014 and the endless opportunities that await.  February 7-14 is Congenital Heart Defect Awareness week!  I am striving this next month to spread awareness by educating and advocating.  I sure hope you will join me!!  

     I hope during my journey with you to provide educatation about Congenital Heart Defects you will learn valuable information!  There is so much people don't know about CHD and spreading awareness is the only way I feel I can help my daughter!  Educating is so important for CHD children because knowledge will provide more funding for Congenital Heart Defects.  Help me spread awareness for my daughter, and all CHD children!  

FACT: Congenital Heart Defects is the World's Number 1 Birth Defect!!

Blessings until next time.

Drena

No Words...Just Tears...God's Love Always!

     We recently just had our Six Month Cardio visit.  What does that consist of you ask?   Well it is a long day of tests, updates, and patients!  Some CHD children have to go weekly, monthly, every six month, or yearly.  My CHD daughter has flip flopped over time.  When Cora was born and finally got to come home our check ups were weekly.  She was on a lot of medication and blood thinners that required her to have tests run weekly.  As Cora grew her appointments leveled out to 3 months, and then more recently to 6 months.

     Having a CHD child you must be prepared for appointments that take three hours instead of 30 minutes.  All the while praying for The Lord to take away your worries  and fears!  My goal is keep Cora's mind off her fears.  Almost being 13 she knows more about her body and what could happen to her than most children will ever have to.  So as her Mom it is my job to keep her calm and not over think the situation.  

     Cora's day usually consists of an EKG, Echocardiogram, X-rays, Oxygen Stats tested, and then a Cardio doctor visit.   After the Cardio check up we sit and wait for everything to be reviewed by her doctors before they come in and let us know what the results are.

     This month's( December) visit was not one of our better ones.  Cora has some irregular heart issues and was decided to be out on a heart monitor for a month or two.  She wasn't real happy knowing she had to wear it all the time, except sleep and showers, but she has adjusted well.  As for emotions, well Cora has her good days and bad.  Right now she says she is just trying to understand.  She is such a trooper, and I completely understand her emotions.  We continue to pray together and cast our worries to The Lord!  Some days well.....there are no words....just tears......knowing we have God's Love always!!

Blessings until next time.

Drena

     

 

The Spirit of The Season!

     The countdown until Christmas is on! Everyone is in a crazy rush to buy presents for all.  Some purchases large, some small....everyone with the same goal......buying buying buying!  Isn't that what makes people happy?  Giving the gift of wants?  Pleasing with the instant gratification and wishes of all our family?   Hummmmm.........Never thought of it that way, huh?

     What about the spirit of the season?  You know....the spirit of Jesus.  The celebration of Jesus' birth, the spirit of hope and miracles.  The Christmas magic!  The joy of simply spending quality time with family, sharing stories and making new memories!  This is the time of season where things are magical, and hearts soar!  People are a little extra generous and kind!  We all tend to make prayers requests in hopes that something a little extra special comes true during this magical season.  So...what is your Christmas wish?

     Well for our family the Christmas prayers have been the same for 12 1/2 years now!  Our Christmas prayer isn't just seasonal but all year through.  It is for all Congenital Heart Defect children to keep fighting their battle believing in Jesus, and know that God will always take care of them!  

     We must all remember and keep faith that the spirit of giving, and healing should be a year round prayer, not just one during the Christmas season.  That Jesus is just a prayer away, and for CHD children they need not just the medical treatment, but prayers of beating and winning the battle!  

     So this season my prayer remains the same, with one additional.....please make your wish and prayers something near and dear to your heart!!  Not something materialist or fading!  There are so many children and adults living with a Congenital Heart Defect that battle each day.  Arming them with a prayer for another day makes more of a difference than you know.  Take it from this CHD Momma, I know first hand that prayers can turn into little kisses from God!

Blessings until next time!

Drena

Finding God's Love!

     Oh boy where do I start?  From the time I understood what love was and how complicated it was I was always very guarded.  I made sure not to get to close to it, or let it consume me.  When I met my husband I let a piece of that wall down.  I thought for the first time I was understanding, accepting, and letting love into my heart.

     Then I let Jesus into my heart and another piece of my wall broke away.  I finally felt what love was and realized I was, and had been, missing out on a lot over the years staying so guarded.  When I thought I had finally reached a pinicale moment accepting love and welcoming it into my mind, heart, and soul, I gave birth to my first daughter!

     Looking at that beautiful baby girl I felt a love completely unknown to me.  I loved her with everything I was, yet terrified at the same time.  I had already known she had a congenital heart defect in utero, and had prepared myself to be a little distant.  But hearing her cry for the first time, and then seeing her beauty......I saw God's Love right before my eyes!

    Sure it is a risk to love!  I know first hand and know I spent a lot of my youth protecting myself from it.  I can tell you I was truly missing out on so much!  With everything in life....if you don't task the risk you may never reap the reward!

    I am so glad God opened my eyes years ago!   Jesus accepted me!  Forgiving me of my foolishness, and helped make me into a better person today!  But most of all, I am so very thankful that with Christ in my heart, I have learned that a Mother's love is something magical and perfect!  I wouldn't change my daughter in anyway!  God knew what he was doing when he made and gave me my Cora! She may not be perfect to most, or meet the norm in society, BUT.......Cora is my perfect!  She makes my heart sing full of love and joy every single day!  Only now have I found God's true love!

Blessings until next time!

Drena