Strength.Courage.Hope: Excitement & Frustration

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:

bbaneJanuary 11, 2012 at 8:00 PM
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.
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AnonymousJanuary 11, 2012 at 8:05 PM
I'll Do What I Can 2 Help..MSG Me On FB & Let Me Know What's Needed <3 You All
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UmangaFebruary 17, 2012 at 6:33 PM
Sorry to hear about Kayden, He is really a very sweet guy.
Your children will eventually make you stronger :)
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About Me

My name is Misty. I'm 26 years old from Roanoke, VA. I am a single mom to my little ones. I've got 5 kids. Alexis, Kayden, Tavion & Isaiah. Kayden is my little Angel, he went to live with the Angels July 14, 2011 waiting on a heart transplant, he was 3.5 years old. Alexis is my oldest she is almost 9, Tavion is 5, Isaiah is 4, and Elijah is 4 months. I enjoy reading, watching movies, blogging, quiet nights(when possible), and long drives listening to music. I started blogging to tell people about Kayden's journey with a broken heart, now it's about life with him as an Angel & how I deal and you'll also get to know my other little ones. You can also visit Kayden's page at www.kaydenjames.weebly.com or on facebook at www.facebook.com/KaydenJamesCHDAngel

My Family

Little Miss Lexi

Alexis is my first child & my only girl. She was born on February 9, 2006. I found out I was pregnant with Lexi 2 months after I had a miscarriage. I was quite surprised that I was pregnant but I was excited along with scared and nervous. She is the best big sister anyone could ask for. She helps with her brothers & she helps me if I need her to..She is a very smart little girl as well, right now she is in preschool. I can't believe my baby girl is almost in Kindergarten. It's true that time doesn't stop for nothing.

Superman

Kayden took his first breath on December 21, 2007 and took his last breath on July 14, 2011. Kayden was born with a bilateral cleft lip and palate, dilated cardiomyopathy & a displaced tricuspid valve with tricuspid regurgitation. He had 6 surgeries in his 3 1/2 years. He had 3 to complete his cleft lip/palate, pyloric stenosis at a month old, a preauricular cyst removed & open heart surgery on March 17, 2011. He always had a smile on his face no matter how many challenges were thrown his way. I miss my child more than anything in this world. I love Kayden more than words can ever say. I am broken and will never be repaired, he was my life & my heart is shattered since he lost his battle with his CHD. I'll never stop telling his story because people need to be aware of what is possible & I would like to think that Kayden's life will save another child.

Crazy Tavy

My middle boy, Tavion James. Tavion was born on May 13, 2009 at 37 weeks. He was my biggest yet shortest baby born lol! He is a handful right now he is at the age he wants to get into everything. Although he is small still he holds his ground and has an attitude. He is starting to get into the terrible twos which is never fun but we will survive. He's an amazing little boy and always keep us smiling. Tavion has no health problems that we've noticed and hopefully he continues to stay that way.

Superman's Baby

Isaiah James was welcomed into the world on December 16, 2010 at 3:02 a.m. He weighed 7 lbs 11 oz. & was 20 1/2 inches!! He had a head full of beautiful black hair (just like his sister did). Kayden absolutely loved him and called him his baby. He's so full of energy, loves his brothers and his sister.
My Rainbow

Elijah was born on August 22, 2014, he was 7 lbs 14.8 oz. He's an absolute blessing. Elijah is my rainbow baby, I was so unsure about having more kids after I lost Kayden, but now I see Kayden picked this little fella to send me. I couldn't imagine my life without him. His smile brightens up my darkest day.