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

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

Rock Your Scar!

For the longest time, I was self-conscious about my scar. I was made fun of for YEARS; yes- years. Between the “zipper” that goes between my breasts down to a few inches above my navel along with the numerous chest tube scars, including one between my “zipper” and my navel that everyone called a second belly button.

Growing up getting picked on for scars was rough, I think it was more difficult than getting picked on for the “normal” things like wearing glasses, having a certain color hair, etc. I was afraid to wear clothes that showed my scars, I was afraid to tell my story, I was afraid of what others thought. Eventually, I realized my scars are just part of my story.

Now that I am almost 26, I embrace my scars and my story and I realize they are like my tattoos; the scars have meaning and tell a part of my story and I wouldn’t be here without them.

Image result for embrace your scars

I looked on Google and Pinterest and found loads of quotes about embracing your scars. CHD affects 1 in 100 people, your scars make you unique just like each heart defect is unique. It doesn’t matter if two people have the same defect, chances are their cases are not identical. I like to refer to scars as battle wounds, you have endured a battle be it physcially, emotionally, or whatever but you won your battle and you are still here. You are a WARRIOR. Never forget that. It took me until I was an adult until I was comfortable in my own skin, even when I married my first husband, I was so ashamed for him to see me naked because I didn’t look like “all the others” well guess what, NEWS FLASH: no two bodies are identical. So I am still slowly learning to embrace it, some days are better than others.

Stay strong and creative!

Rebecca