Ten Wishes

I have a beautiful friend who lost her precious daughter at five-days-old to an undiagnosed congenital heart defect.  You can read about Kristine and her amazing daughter, Cora, by visiting their blog.  Today, the 30th of every month, marks the anniversary of Cora’s birth.  She would have been 7-months-old today.  Kristine talked about her ten wishes  on Cora’s blog and asked “What do you wish?”  So, I’m answering her question…as best I can…in honor of Cora on Wear Pink For Cora Day.

1.  I wish that Cora was still with her mom and dad…and that Pierce, Aiden, Gracie, Stephen, Elaine, Hope, and thousands and thousands of other CHD children were with their mom and dad also.  I wish that these angel’s broken hearts were diagnosed or treated.

2.  I wish that more mothers and fathers knew what Congenital Heart Defects are.  I wish they knew that 1 in every 100 babies would be born with a heart defect.  I wish they knew that this defect is the birth defect MOST likely to affect their precious babies.

3.  I wish that no parent ever had to experience this.  The stress, the fear, the anxiety, the pain of watching helpless….I wish I could put into words what this feel likes when it is YOUR child.

4.  I wish the CHD community could come together and rally for this cause.  I dabble here and there in CHD awareness.  I would love to do more; however, I wish that pride and anger or self-serving indulgence did not corrupt our efforts.  The squabbles and bickering scare me away enough that I am not as involved as I would like…I want to be involved enough to help change the world, not fight over board policies, presidents of organizations, and which organization has the “rights” to do what they are doing.  I wish it was easier to be involved.

5.  I wish my daughter’s voice was heard more.  Her fight with this monster has changed my life.  It has changed her grandparent’s life.  It has changed her aunts and uncles’ lives.  It has changed ALL who really know her.  Her voice about this disease is amazing!!  You can hear her voice here or here.  I wish that the world could know how this journey has affected HER and millions of others like her who are living with CHD.

6.  I wish more funding for research was available for congenital heart defects and methods to treat it.  I wish this picture wasn’t gruesome to most people because THIS is what will keep children from dying, allow minimally invasive surgeries, and clues as to the causes and ways to stop CHD.  I wish more money for research was available.  (This is a pigs heart, that is beating independently from the body thanks to researchers.  These kinds of studies are imperative for finding new treatments and cures and improving on the ones in existence.)

7.  I wish that others wouldn’t downplay CHD.  I wish that the medical community wouldn’t downplay it by dismissing calls for universal pulse-ox testing.  I wish others would NEVER ask me if a certain surgery or procedure will “fix Abby’s heart.”  Her heart will never be “fixed.”  Her defect has actually altered the physiology of her heart…never to be whole or repaired.  Thanks to research from years and years ago….it can be treated…but never fixed.  I wish the media wouldn’t downplay CHD by glossing over us.

8.  I wish that I could thank the surgeons who have saved my daughter’s life.  I wish I could express the feelings I feel when I learn about the pioneering surgeons and doctor’s who first operated on Tetralogy of Fallot.  I wish I could somehow express my sincere gratitude for those who have offered love, support, phone calls, meals, babysitting, cards, gifts, encouragement, and care for Abby and our family over the years.  I wish words like thank-you, appreciation, and gratitude could express the way I really felt in my heart for ALL of you who have reached out in our times of need.

9.  I wish that every cough, fever, dental visit, headache, dizzy spell, fainting spell, sore throat, and light sensitivity didn’t cause a world of anxiety in our life.  I wish others UNDERSTOOD how devastating exposing my daughter to certain illnesses can be.

10.  I wish that the future for this little girl gets brighter.  I wish for her all the happiness she deserves.  She is my hero…and has taught me more about grace, courage, faith, love, and light than anyone.  I wish for her broken heart to be happy.

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