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

Kindness Rocks

Facebook has been taken by storm by a new thing, kindness rocks! The rocks are painted and then “hidden”. You track your rocks using a hashtag, when you find rocks you take a picture of it and post it in your local Facebook group with the hashtag on the rock and then you can keep it or rehide it for someone else to find!

The premise of the rocks is to spread kindness and encouragement through pictures or sayings on the rocks and then get everyone who finds rocks to join in! There is a Facebook page for The Kindness Rocks Project as well as a Challenge being sponsored by Michaels. You can also find groups local to your area.

This week, my nephews and I had a ton of fun painting rocks that I had gotten from a local landscape design store. A lot of people go out “rock hunting” to find rocks to paint but since it is crazy hot in North Carolina right now, it is best that I just go buy some rocks. I picked out rocks that varied in size so we had a nice range to choose from.

Pinterest is my best friend, no seriously… I found SO MANY great ideas of what I could paint on my rocks, I picked two lighthouses, a owl, and a swingset. The boys on the other hand enjoyed thowing whatever paint they put on their brush and calling it a day. I promise they really enjoy panting they just don’t have much patience.

When I saw all these awesome rocks, I decided that I would use some of them to spread awareness for CHD, we are already lacking representation so why not make something fun and spread awareness while doing it? I’m in several CHD Facebook groups so I posted my idea in one of them and within 24 hours, I had created my group CHDAwareness Rocks and we had over 100 members. We are made up of Heart Warrior family memebers, friends, and spouses as well as Adult Heart Warriors. The best part is we represent just about the whole United States! Our hashtag for our rocks is #CHDRocks.

Once you have found your rocks, painted your rocks (and let them dry), you can either write on the back your hashtag and where to post or you can create labels on your computer and print them and adhere them with Mod Podge and use the Mod Podge to cover the rocks (don’t worry if it looks streaky, it dries clear) and then spray with gloss sealant. This will keep the rocks protected from the weather!

I hope you guys join in and share your rocks with me!

Stay creative and battle on!

Rebecca