I have handed my son over to surgeons knowing they would stop his heart, and prayed that it would beat again. I have learned more than I ever thought I could. I have cried more than I ever thought possible. I have celebrated victories and milestones that others never have to. I have walked a road I never knew existed. I will walk this road forever. I am a mommy to a CHD Angel ♥ iLy Kayden James

Wednesday, January 11, 2012

Excitement & Frustration

Well I've been posting for months on our news' facebook page. I did back in June about Kayden needing a transplant, I can't remember if I did while he was in Boston or not. But I know I did in June & I did in July and after he'd passed away. I also commented telling them about the heart walk in November. Well I NEVER got a response so I got so frustrated with them because they run EVERYTHING else...WHY NOT MY KID? Or WHY NOT HEART DEFECTS? Well I posted again yesterday and left some facts for them & I got a message this morning from a reporter saying she'd like to talk with me. SO I'm praying this goes somewhere. I've been let down many other times so I just hope this goes through and I hope I can FINALLY get Kayden's name out there! He deserves it! I want my babies name out there I want people to hear his story I want HIS LIFE to help someone else's!! I'm hopefully this year going to start up a foundation or something in Kayden's memory that will help other heart families! That is my goal, I want his life to touch any and everyone's! 
I heard some very sad news today. A family at UVa's home burnt down. Their 2.5 year old daughter is waiting on a heart transplant. I'm going to do what I can to help them even if it's just raising money, getting clothes together, etc.! I know the stress of waiting for a transplant. Though Kayden was stuck in his room on a vent, or something so he couldn't go out of his room, this little girl can. So they haven't went all the way crazy being stuck in 1 room! But anyways they lost their home, I'm not sure if they have other kids I haven't found out a lot of info yet! But I'm trying! PLEASE say a prayer for them & if you are able to help please e-mail me at misty.ferris22@yahoo.com or message me on facebook! I'm sure they are just glad they at least still have their sweet girl with them ♥

I'm kind of frustrated though, I want to help in the CHD community as much as I can, but sometimes I feel like I get shut out or pushed away now because my baby died. I don't know if people do it purposely or if they just don't realize they're doing it! It's not my choice he's not here! Trust me I'd gladly let ANYTHING go to have him back! A life a child, is irreplaceable, clothes, shoes, toys, homes, cars, boats, etc all of those things can be replaced but a life can not. I do have a feeling if I keep getting treated this way I will just completely leave the CHD community online and do what I feel I need to, to remember my son and go from there. So just a little bug in some people's ears, we lost our CHDer not by choice, we were forced to. Do you think we asked for it? HELL NO. Please do not treat us as if we have no idea what it's like to go through the things you're dealing with, please do not treat us as if we're crazy for still wanting to help. PLEASE do not ignore us when we give advice just from our experience. Maybe the doctors want to do something on your child that they did on ours...and ours is no longer here. Please treat us as if our kids are here and as if we ARE still a part of the CHD online community. Always remember the warriors survive on the wings of the Angels ♥

3 comments:

  1. No matter how many times I read Kayden's story it touches my heart and makes me cry. I just wanted to tell you, You are a wonderful person/Mommy. and I know Kayden is proud as hell that he had a mommy like you. I am a mother of a 3 year old little boy and I dont know what I would do if I lost my baby, my everything, my reason for breathing, and you are taking an amazing step to keep Kayden's memories alive and I have such great respect for you. Everything you want will happen, I know this because everything you have done so far and not willing to give up will make this happen.

    ReplyDelete
  2. I'll Do What I Can 2 Help..MSG Me On FB & Let Me Know What's Needed <3 You All

    ReplyDelete
  3. Sorry to hear about Kayden, He is really a very sweet guy.
    Your children will eventually make you stronger :)

    ReplyDelete