Choices

Being the parent of a child with a Congenital Heart Defect is definitely not a club I would ever want to join. I have slept on hospital couches, I have fallen asleep to beeping machines, I have eaten Oreo's at 2 am because I could not sleep. I had to learn what a Coarctation of the Aorta with complications was. I learned in order to save my daughter's life I had to agree to the following:

-To stop my daughter's heart and hook her up to the heart lung machine
-Allow the surgeon to cut out a portion of her Aorta and splice the remaining parts back together
-Then hope her heart would restart when they were finished
-Did I mention that her heart was the size of a Walnut?
-Did I mention they had to break her rib cage to complete this procedure?

Once you join this "Club" you have to make choices and force your child to make choices that they do not understand or want. So they aren't really choices this is the problem and this is what the surgeon has to do so your child can live!

As our journey continued my child knew she was different and she assumed constant visits to doctors and specialists were common place. She even calls Levine Children's Hospital "Her Hospital". We know almost all the staff at the Pediatricians office by first name. One day her Cardiologist took time out of his busy schedule to watch her play soccer. This is certainly not the life I envisioned for my child.

If I were to share anything with other parents it would be to allow your children to make choices and give them their power back. They can't refuse to go to the cath lab, get a blood draw, lay perfectly still for an echo or refuse the doctor to do his job. But as the parent can give them other choices. What do you want to wear to the doctor appointment? Where do you want go after the appointment? What do you want to watch while the tech completes your echo? Most of these decisions mean nothing to most people. To a child who has to suffer through these procedures, those simple choices mean the world to them.

These decisions that consume a heart families everyday life mean nothing to those unaffected and unaware. Through the month of February I want to make you aware. Most unaffected will go about everyday life March 1st as if nothing has happened. For us Congenital Heart Defects make us aware March, April, May, June, July, August, September, October, November, December and January too. Simple put it never ends it is always there and we are always aware.

#areyouaware

TTFN~