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

CHD School Advocating-Part 1!

 

     From the beginning of Cora's school career I knew there was a good chance she would need some type of help learning.  In Kindergarten I could see signs of some social struggles.  At the time, I figured it was just the learning curve for 5 and 6 year olds.  When Cora entered the first grade I began to identify Cora's comprehension struggles.  After seeing this I began to see her struggle with her numbers in math class, as well as not understanding directions on her homework sheets.  Honestly it just appeared out of no where one day.  Since that day I have been advocating for this sweet thing and her right for a good education.   

     As Cora continues to get older, class settings are changing.  Things are increasingly more challenging daily for her.  She is encountering more classes, more responsibility, having to be organized, and self sufficient with time management and memory.  For Cora it is pure stress, fear, anxiety, and melt downs on a regular basis.   For me, it is a time to put all my ducks in a row!  To begin educating all her teachers about her current IEP, and her additional diagnosis through Children's Hospital.  This is crucial for Cora's school career success.  Is this easy?  Absolutely not!!  It is literally starting all over, every year, as if they don't know Cora.  It is spoon feeding information to the IEP teacher(s), as well as her individual teachers.  It is being patient yet stern at the same time.  It is listening to 6 teachers try to tell you they know your child better than you.  It is a constant tug of war, remembering and reminding we are all here to do our best for her education.  IT IS SIMPLY  EXHAUSTING!

 

     Each new school year brings another year of educating the educators.  As much as the children look forward to summer, the more I do not!  Not because I don't want my children around, it's just the starting over at the beginning of each school year that gets to me! The end of the school year wipes out all the work a CHD parent does in advocating throughout the school year. The slate is wiped clean and starting over is inevitable!  But, through the years I have learned a few things.  Some things that I learned were touch lessons, while others came through God's grace.  

     Soon my CHD daughter will be headed off to high school wanting to be just like every other person in high school.  Educating starts at home, teaching your CHD child, and then armed together we will be ready to join hands and encounter another big, new change called high school.

     Please look for part 2 of CHD advocating in the school.  I will share 5 things I have learned over the years having a CHD daughter with an IEP.  Plus a few tricks to make things go a little more smoothly.  If we join together not only will be spreading CHD awareness, we will be paving a better path for those sweet little CHD children yet to come into the educational school system!

Blessings Until Next Time!

Drena

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

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