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

Saturday, January 28, 2012

Only God knows why..

Tonight I'm reliving the most awful night of my life as I hear of another little heart baby who earned his Angel wings tonight. My heart is breaking for them. Every time I hear about another Angel going to Heaven, I relive that night. I can't get through this blog without crying, and I've already started lol. Oh well, one thing I've learnt is don't hold it in because it'll overflow and be much worse when it does.
I don't know why he chose Kayden, but I do know he did choose him, he didn't take him for no reason. Kayden was an Angel from day 1 of my pregnancy. He fought a hard battle and in the end I don't think he lost, if going to Heaven is losing the fight, then Heaven wouldn't be a good place to go right? But Heaven is beautiful and I can picture my little love running through the fields of flowers playing with Heaven's littlest Angels, or sitting in the grass under the sun with my grandpa. This little boy who went to Heaven this evening was already a few months post transplant. So if you've been reading my blog or you know me personally you already know but for those who are maybe just skipping through blogs and came across mine, Kayden was waiting on a heart transplant. 
This is proof that transplant is not a cure for heart disease/heart defects. I will NEVER EVER EVER EVER EVVVVER be thankful Kayden isn't here, but I am thankful God did not put me through the pain of losing him AFTER transplant. I have said over and over and will one more time if he still went to Heaven after transplant, that would be so much harder, because that's the last option, after transplant there is NOTHING to try to save our kids. Heaven is our home, that is where we all belong. God truly only takes the best I believe that. But even more I believe only the good die young. That is probably why this world is in such bad shape. Because all of the good people like our children who would have grown up to be great men or women have died. they went to Heaven and are shining down waiting on their families to join them.

I tell my mom all the time, when she is on her death bed, I'm sure I'll be right there beside her, and if she's in her right mind, I want her to tell me if she sees Kayden. Even if she just says his name. I want to know he's there when she goes, that way I'll know when I'm on mine, I'll have him right there and I know she'll be right beside him. It was always me, Kayden & Nana (my mom). ALWAYS. When I wasn't with that baby, she was. So as I end this tonight with tears running down my face and a broken heart I want you to stop and think. CHD kills so many kids, so many of you think transplant is a cure. THERE IS NO CURE AND THERE IS SO LITTLE AWARENESS. Are YOU ready to help us raise awareness yet?! We need the research so the doctors can help our kids better!! Fly high to all of our little Heart Hero Angels ♥ ♥

Thursday, January 26, 2012

Ohh 2012..

So this is kinda a random blog but I figured I'd post it anyways lol. So far this year has been a little of everything, good, bad, sad, etc. Today I got a new phone. Yea big deal you say. Well it is and it was hard for me, Kayden LOVED playing with my blackberry, I have all kinda pics of him on my memory card and videos as well. I miss that boy so much, and that phone has been in a lot of hospitals with us. It's been along way through out Kayden's journey. So I think I might be putting it up with his things. That way I'll always have it as the last phone I had that Kayden loved ♥ I've had a few good days so far but a few bad ones. I sometimes don't know how to keep going and I get confused, like where's he at?! That someone is missing feeling. I get that all the time, it's hard because I know it'll stick with me forever. I know a lot of people say oh it gets easier, blah blah. NO it's not gotten easier and I think it'll always be like this for me. I love that boy with all of my heart, Kayden was not a normal child, and I think that's hard for some people to understand, he truly was not like any other child, he never was. So I don't think life will be anything but this. No I'm not depressed all the time, NO I'm not in a fantasy world thinking he'll be back in a month. I know he's never coming back, but I do know I'll see him again. I do know I feel him around me sometimes. BUT I still miss him and I still want him here with me.

I get so pissed when I see other moms with a sick child out here partying, or leaving their baby with someone else. I mean that just erks my nerves because I didn't do that shit with Kayden. IF I had to leave him it wasn't for long and it was something important, like appointments he could go to, or even getting Alexis & Lyndsee from school. I mean I didn't just leave him to go shopping or to go out drinking. And it just aggravates me and I have to question WHY DID HE TAKE KAYDEN?! I LOVED AND STILL DO LOVE HIM SO MUCH I'D DIE. I mean if I could have I would have gave that baby MY HEART! I really would have I wouldn't have thought about it!

I have came to the conclusion, I will always feel angry sometimes, I will have happy days and sad days. I will have days where I just can't hardly breathe because the pain has overtaken me. BUT one thing I do know is I WILL make it through this until it's my time to go. I will come out a survivor just like MY SON ♥ ily Kayden James ♥

Thursday, January 19, 2012


It's weird how different things are for me now & how they changed within the last year. I mean a year ago, I was giving meds 3 times a day, I had doctor appointments out the behind, I had a newborn baby, and I was scared every time my son got sick. I don't know where I went wrong or if I did in the last year to make these things happen. If I didn't do something I should have I owe Kayden the apology because he isn't here! BUT shouldn't the doctors have known? YEA. I keep beating myself up over not pushing for UVa to send him to Boston when they said if his kidneys or liver failed he'd have to get to Boston somehow, for the Glenn to be taken down and put on ECMO. WHY DIDN'T I THINK OF THAT?! Would it have made a difference? We will never know. Can I think it would have?! NO I CAN NOT THINK IT WOULD! I'm miserable without him as it is, and thinking if I did this or that then Kayman would be here today, that just makes it worse! I HAVE to believe for my sanity that I did everything I could for him and that God wanted him to come home ♥ I have to believe that and build my faith on it. I will trust that it was God's will, I will trust that God will not take us before our time, if it weren't his time, God would have helped Kayden's heart keep beating. I can not believe his life was ALL in the doctors hands. I must believe it was in Gods hands. 

I don't like this life I'm living today, I wish it were a year ago so I could be with Kayden. I love my other kids yes, and that aspect of my life i LOVE. BUT I miss my son every day and every second. You may pass me in the store or see me driving or walking, you may think I'm a normal person from looking, little do you know. I'm suffering on the inside, my heart is shattered and yes it's true I do have half a heart because my heart is torn between 2 worlds, Heaven & Earth. I have a little love in Heaven waiting for me & I can't wait until I see that smiling face again, but yet I've got 3 little loves here on Earth who I love so dearly and who will brighten my days when I'm down ♥

I hope some day a mom who is down on something in here life, will read this blog or through all of my blogs, and realize. There is HOPE after the most horrible thing God puts us through. We can make it, we will make it. I am no where near the end of my journey without my baby, but I must say that I'm trying to turn my life around and find who I am again. I will miss who I was but that part of me went to Heaven the morning Kayden left this world ♥ goodnight & love you all ♥

Monday, January 16, 2012

Making a Difference 1 balloon at a time!

I'm so excited to say on February 14th I will be releasing 100 balloons for CHD Awareness week!

If you are not AWARE

CHD Awareness week is February 7-14.
1 in 100 babies will be born with a heart defect.

On each balloon I will put a name of a CHD Warrior or the name & dates of a CHD Angel.
I will also be letting go of a wish lantern that night will 100 names on it as well and again the names & dates of our Angels.

I will ALSO be featuring a warrior or Angels story in my blog each day that week and maybe the whole month!! I can not wait to honor all these kids or adults ♥ 

Anyways, I went to visit one of my best friends Saturday in Kentucky me & the kids had an awesome time with Amanda! We love her so much ♥ The kids did awesome on the way there and on the way home it's about 4.5 hours away lol. Kayden's 6 month Angelversary was on Saturday, I had a couple hard days before. It feels so weird some days. I hate that in 6 more months it will make 1 year. My heart is so broken =/ I miss that boy so much I wish I could just hear his little voice again and hug him. I miss cuddling with him =[. But it does give me comfort helping the other heart families ♥

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 ♥

Saturday, January 7, 2012

Almost 6 months..

UGH! So January 14 will be Kayden's 6 month Angelversary =[..My heart still hurts, my arms still ache to hold him. On New years I got his Mickey Mouse pillow and gave it a BIG squeeze!! That's one of few things that was with him up until he took his final breath.

A little light into my life in the last 6 months.
I've had a lot of breakdowns, I've felt different emotions, all the way from jealousy all the way to hate all the way to love & sadness.
♥Yea, when I see some people post about their kids how well they are or about them getting a new heart, at first I did get so upset and a little jealous because it should have been ME posting that about my child!! WHY CAN'T I SAY YAYY KAYDEN'S DOING GREAT OR OMG HE GOT A HEART?!?!?! I mean REALLY? How could anyone expect any thing else from me or other Angel parents?
♥Hate! YES I HATE CHD! I HATE CARDIOMYOPATHY!! It killed my son, it took him from me, I will never ever ever see him until I am in Heaven!! I hate the CHD affects so many kids every day, I HATE how many kids I've seen die in the last 6 months because of a heart condition. Yet NO one wants to speak of it or bring awareness or raise funds for the Children's Heart Foundation.
♥Love! Kayden showed me how to love unconditionally. No matter what one is going through love them, love will always be greater than ANYTHING! I've tried to be a better mom to my other kids since Kayden's been gone. I tell them how much I love them every chance I get! I've grown to love moms I've never met because we are connected because of this awful killer who is attacking our children!
♥Sadness! I've felt the worst kind of pain anyone should ever feel. I lost my baby & I live with this sadness daily. But yet I have to learn to control the emotion and to hide the sadness at the times that I can't show it. Some people understand others don't.

You see we are all just a heartbeat away from death. I've learned that. No one taught me that except for when I lost my son. A part of me died with him, he took half of my heart literally. But Kayden will ALWAYS live on through me, he IS A PART OF ME. Although I can not physically touch him, hold him, or hear him. I KNOW he is there. I said this shortly after Kayden passed. But I believe we as mother's carry our babies and we have that connection between our child before birth, after birth, and now I believe even after death. ♥