Tuesday, October 1, 2013

Our walk

Julianna woke up on Sunday morning and we heard her (through the monitor) say to Tyler, "Today is your heart walk day Tyler". My heart melted and even though she doesn't know what it really is about, at least she knows about the walk and was excited to go and she knew it had something to do with him.

Sunday was our CHD (Congenital Heart Defect) Coalition walk that I talked about in previous posts. Here is the link to my CHD Coalition page if you want to check it out. Technically it's not a "walk", it's a fundraiser & gathering for an amazing cause.  Yes you walk around the 'duck pond' but it's really about CHD warriors (survivors) and sadly in some cases, it's angels. The money raised was for Congenital Heart Defect Research & Awareness... Brian and I we raised $920! That was way more than I ever thought we would do. I am so thankful & blessed that we received the support & donations from our friends and family. It amazes me how fabulous other people can be when they know how important something like this is to you!

After spending most of the day at this event, my mind was spinning as to how much 'more' we could do for next year. We were part of the (Goryeb Children's) Hospital's team this year, but next year, I think I want to create our own CHD team for Tyler! We can do great things with this and I think I really want to go all out and recruit everyone I know to be part of this special event. It was such an emotional day to see all the CHD babies & children running around healthy and happy & it was so inspiring for Tyler's future and the future of CHD research. I think this needs to be something bigger for us and for our family next year. Brian and I already have ideas for team names, fundraising, sponsorship, etc!

Most of the teams made posters for the warrior they were walking for, and they were hung up for everyone to read. We did not make a poster this year, but I will totally make that a priority next year. I read story after story of each child, looked at all of the photos, and I broke down crying because it reminded me of Tyler's surgery and hospital stay... and all the emotion that went along with that horrific experience. It exposed a nerve for sure. I stood there holding Tyler in my arms, reading the posters, crying because everyone there today shared similar stories. We are all connected in a very special way and had pieces of our hearts broken when our little warriors were sick. We all had a CHD rockstar with a unique story to share. The CHD Coalition released butterflies to honor the children who lost their battle and turned into Angels. The whole event was very emotional and overwhelming to me.

Some of the parents from our CHD support group were there Sunday walking with their little warriors & families. It was nice to meet their families and of course their blessed little heart children! I feel like I will be even closer with some of these parents as time goes on especially since I got to meet their beautiful little heart babies!

It's so weird to think just 5 short months ago, Congenital Heart Defects weren't a thought in my head and never in my life. Now I'm completely immersed in Congenital Heart stuff up to my neck & I want to be as involved with it as I can. I want to make sure my son has the best possible outcome and healthy future, so I feel like I need to stay on top of everything. There is a group called "Little Mended Hearts" which has local chapters all over the country - except there isn't a local chapter in New Jersey - so of course the website asks if you want to start a local group in your area. I actually would LOVE to do that, but I know I am not physically & mentally able to take on that challenge right now since it requires a major time commitment, however I might think about doing that in the future if no one else does it for New Jersey.

Oh and wouldn't you know it? I completely left my big girl camera at home. I was SO bummed out & had planned on taking a ton of pictures Sunday. So instead, I took a few with my iPhone. Not the same... but it's better than nothing.

Our "Team Heart Throbs" shirt - Brian & Julianna 

 Me & Brian 

All of us 

 All of the CHD warrior posters hung up - Amazing stories!

Daddy & Julianna blowing bubbles (Brian put his other CHD walk shirt on - it fit better)

Me & my boy :) 

Julianna got a butterfly tattoo

Julianna painted a pumpkin - there was so much for the kids to do! 

 Drying pumpkins

Seriously, does it get cuter than this? 
He is very proud of his scar too! 

Tribute to all the Angels

Tyler's shirt (He'll fit into it in a couple years!)


  1. Honest to goodness...that smile of his melts MY heart :).

    1. Thank you Kathy!! His smile is contagious and amazing!

  2. I don't see how it can get cuter than Tyler smiling!

    If anyone can make a difference on this CHD campaign, you and Brian can. You both are
    idea people and doers. So, you'll both make terrific contributions. You already have.

    1. Thank you I think next year can be really big now that we've seen what the event is all about! :)

  3. Both your kids are so, so adorable! And that walk sounds just amazing. You guys are doing so much good in the world! ~Carla


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