20 things a parent goes through, having a child with CHD

A dear friend who is a Heart Momma posted this on her Facebook the other day and it is 100% true. Desiree is the Mom of a precious little girl named Harper who was also born with Congenital Heart Defects, specifically Atrial Septum Defect and Ventricular Septum Defect. She has allowed me to share her list with you all.

A lot of this is relatable even if you are the one with CHD.

20 things a parent goes through, having a child with CHD :

1. Hearing the Dr say “There’s something wrong with your daughter’s heart.”
2. Hearing the Dr say “In order for your daughter to live, we have to do open heart surgery.”
3. Sitting in a hospital room with your child, having a machine breathe for them.
4. Making sure their wounds heal properly.
5. Watching your baby cry and reach for you in pain, and not being able to pick them up and comfort them.
6. Concern about every cough and sniffle.
7. Worries about everyone else’s coughs and sniffles.
8. Explaining to family and friends why you can’t be around as much during cold and flu season.
9. Having people make you feel like your worries are not valid.
10. Losing people in your life for either lack of understanding or lack of wanting to understand.
11. Crying of happiness over every single milestone because there was a chance she would never reach that milestone.
12. Crying of sadness because so many don’t understand why each milestone is so important, and what a miracle your baby truly is.
13. The feeling of loneliness.
14. The feeling of anger because “why MY baby?”
15. Trying to understand that it’s no one’s responsibility to educate themselves on your child’s condition, but hope that those closest to you will try.
16. That surgery IS NOT a cure.
17. Wondering about her future.
18. Thanking God everyday that you get to be her momma and daddy.
19. Questioning every decision you make when it comes to her.
20. Feeling blessed for witnessing a miracle everyday!

 -Harper’s momma and daddy-

 

Battle On,

Rebecca

It’s okay to not be okay.

REAL TALK. MOMENT OF TRUTH. 

We are human, we have our ups and we have our downs.

Not every day, every week, or every month is sunshine and roses- we have our seasons and our rough patches and guess what: THAT IS OK.

As humans, we are creatures of habit- it’s true. After working many years in retail, I find myself walking past people in stores and greeting them like I did when I was working and I usually say “Hey, how are you” without even realizing it or my response to someone asking me “how are you” would always be “good” or “I’m okay”. But I’ve realized something, it’s okay not to be okay.

 

Battle On,

Rebecca