Tuesday, February 18, 2014


Heart week is over. I have to say I'm kind of happy about that. Not that I don't like CHD awareness or anything. I love CHD awareness. Its so important! I'm just happy that I'm no longer seeing heart mom pictures as every other post on facebook.

Let me state something. I love heart moms. I will NEVER down-play their part in the CHD journey. And I am not say they don't have a hard time. I know they have an extremely hard time. I can't even imagine being them, having to watch a child go through what we go through.
I just get tired of seeing all the heart mom posts. Its ALWAYS a heart mom this, a heart mom that. Sometimes a heart dad is thrown in there. There is one person everyone forgets though, the CHDer themselves. I always see these beautiful heart mom pictures posted, I want one for CHDers also! There are poems about heart moms, I don't see many about CHDers though. I was looking at shirts, and I found all these super cute heart mom shirts, yet the CHDer ones are either for babies, or ugly. It just gets frustrating that we are over looked!!!

We the CHDers, we have the toughest part. We are the ones who are sick. We get out chests cracked open. We have to take our shirts off and get echos, which can be very uncomfortable at times. We have to get the EKGs, we give gallons of blood one vile at a time. We are the ones who can't always do everything we want. 

We are the ones covered in scars.
 Reminders of some of the hardest things we've had to go through.

Like I said. I know heart moms, and dads, have a hard journey too. But SO DO WE!

I'm just so tired of being overlooked.

Tuesday, February 11, 2014

CHD Awareness Week.

It's heart month! This heart month seems different then other heart months. I'm not exactly sure why, I just don't seem to be in my groove. I'm trying to be that person who educates others about CHD. I post pictures, I try to do edits. My hearts just not in it.

(one of the edits I've done this year)

I've even stopped doing edits for other. I kind of have a love hate relationship with edits at the moment. And with the way people ask for them. No respect and no manners!
I don't know. I want to be more into it, but sharing a picture is about all I can muster. 
Maybe because this heart month is different. This heart month marks 1 year since Kylie died. Actually today is the actual day. 1 year ago today. That seems so surreal to type. I still can't believe it. She is the only CHDer I met who has died. My heart is still broken over it.

(fly high Kylie bug!)

I had a dream about her not to long ago. Some of you may remember my promise left unkept, if not read it here. In my dream, we played. We played and we played. She even ran. When I visited her in the hospital she wanted to play with me, but couldn't for more then a minute. She was just so tired. This dream was so reassuring. She can play now!! And I got to keep my promise!!

I had a dream about my dad also. I swear my dreams are taunting me. I'm so use to my dreams taunting me, and torturing me. After surgery I had a lot of nightmares that hurt, physically, they hurt. I'm even use to my dreams taunting me about now being able to have babies, but this one was different. My dreams have never taunted me before about my dad. And it just hurt.

(one of my favorite pictures of me and my dad)

In the dream, we were looking for my dad. It went back and forth between looking for my dad, and a ring of my dads. It was weird. But I just know, we couldn't find him. At one point the ring turned into a spider, again, it was weird. I just know the theme of the dream was we couldn't find him. That he is lost. And it just tore at my soul because I knew in my heart, he isn't lost. I know exactly where he is, and I cant go there!! I had this dream twice. Each time it broke my heart. 

(leukemia isn't what killed him but I know it had a very big hand in his death)

Anyways, so, I know this post is all over the place. But I just had to get that out. Like I've said before, this blog is more of diary for me. So please be patient with me. CHD is hard, and not all of use always want to celebrate heart month.

But since it is CHD awareness week, I will leave you with some CHD facts.

-1 in 100 babies will be born with some kind of CHD
-That is about 40 thousand CHDers born every year!
-4 thousand of them wont live to see their first birthday
-thousands more wont make it til adulthood.
-For the first time ever, more then 50% of CHDers are adults!
-Most CHDers will require at least one invasive surgery in their lifetime
-There is no cure!
-Transplant is NOT a cure. As one doctor once said "Transplant is taking a fatally ill person and turning them into a chronically ill person."