Broken Spirit!

     Going from discovery of being pregnant to having a child with a heart defect, runs the gamut of all the emotions imaginable, and some non-imaginable. I can't speak for any other Congenital Heart Defect parent, but for me, my spirit was broken.  Every Momma, to be, has envisioned life after the birth of their beautiful child.  From the first moment you get to hold them.  To the moment you get to see them graduate.  For me, those expectations were crushed the moment the doctor informed us that the visions of having a healthy child was not in the cards for us.  The reality, and the disappointment, that I may never experience my babies first cry, first smile, first crawl, or even the first time they said Momma was horrid!  This brought forth emotions of anger, envy, and disparity.

     Being pregnant is suppose to be a joyous time to share!  I carried around pent up confusion, and anguish.  Oh sure I put the happy face on and went along with the belly rubs.  But deep inside I wanted to smack people.  I want them to feel pain!  My heart and soul ached knowing my babies survival rate, after birth, was slim to none.  I had the mentality that if I hurt day in and day out, everyone else should feel a little pain too!

      Left with no choice, the expectations cast upon me, by me, to be a perfect Momma To Be, almost completely ruined me!  I spent those 9 months hiding my broken spirit, just pushing through each day.  Praying for a little light at the end of my babies tunnel.

     Reflecting back on that time, I realized that the pain and anguish I felt, prepared me for the joy God has given me!  14 crazy, draining, but oh so beautiful years with my CHD daughter.  My prayer now.....that God will grant me many many more years just like the first 14!

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