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, October 27, 2012

The hardest job I've ever had...

Being a single parent is the hardest thing I've ever done. I didn't quite realize that until today, when I was trying to get Alexis to clean her room and listen to me. UGH..I had my niece today while mom worked and well if you know me then you know these two girls fight like hell. Well, go figure neither were listening to me. Alexis kept running through the apartment and I was telling her to stop running and clean her room, it was a disaster. Of course she didn't listen...So I told her if she didn't get in there and clean then I'd take her tv out of her room. I let the kids do almost anything but I need some help keeping the house clean and Alexis is old enough to help with that. She can pick up after her self or clean her room. Soo her and Lynds are in her room of course I hear them yelling and fighting. So I went in there and what have they done? Pulled more crap out. So I took her tv out she got mad and yelled at me that I didn't like her, etc. So she had me almost in tears. It's not been a good day. But she did get her room clean. Is it wrong I still won't put her tv in her room? I just think they are getting away with too much lately, and I don't want them walking all over me as they get older. I'm still their mother. I just feel like I have to be good to them because I am all they have. I've never walked out and left them behind. It just hurts so much when Lexi says I don't like her because I try to discipline her. I don't do it to be mean. I feel like I have to cut them some slack too because they too lost Kayden. They lost memories that should be made, they lost their brother.

Today I took bubby his pumpkin for Halloween and for Thanksgiving. It'll stay there all through November..just like last year. With the holidays quickly approaching and his birthday coming, my hearts been heavy lately. I just miss him so much my heart is crying. My arms ache for him and I wish he were here to see everything that's going on. I know he sees now but it would be better if he were here. I hate that my new friends I've made will never meet Kayden. I hate that when I meet that special someone in my life will meet the other kids but he will never meet Kayden, he'll only know Kayden through what I tell him. Which I could go on for days about that child. Kayden was my life and still is my life. I still don't understand why God chose him but I miss him dearly and wish I could have one more moment with him..even if at the end of the day that still wasn't enough. I love you Kayden James ♥

Thursday, October 18, 2012

Eff you CHD.

Today has been one of those rough days once again. But it's been bad the last few days, I mean really bad, like holding back the bursting out in tears in the middle of work bad. I have to laugh and always talk at work to stop myself...But all day I would keep seeing the images of Kayden laying there at the funeral home, or walking in to the hospital room never losing that piece of hope until I walked through the door and saw him in my moms arms. Falling to my knees to pray to God to keep him with us that night. Hearing Lexi say he was so cold after giving him her last kiss...Hearing Tavion say shh Kayen night night. Watching his brothers and sister grow up without him around. I still hear his little voice in my head, feel him holding my hand, or giving me night night kisses. FUCK I MISS THOSE KISSES. Singing his moon song at night time, he'd always tell the moon night night too.

Man I can't believe it's almost Halloween, Kayden didn't like Halloween much, he did before he got sick. His last Halloween he was a vampire, and my niece a werewolf, for Twilight LOL. Kayden was my little personal vampire =]! He didn't like his costume but I like to think it was mostly cuz he just didn't feel well. Poor bubby =[....Saturday we plan on taking the kids to the pumpkin patch, I haven't went since we took Kayden and all the kids in 2010, so yea it's going to be hard. But I'm gunna try to make the best of it, and hopefully get Kayden a pumpkin for the cemetery ♥


I must say this, I say it all the time, people piss me off when they try comparing CHD and childhood cancers...it's statistics and facts out there proving CHD kills twice as many children PER YEAR that ALL CHILDHOOD CANCERS COMBINED! When will people stop being so blind and realize that..And to say childhood cancers don't get much funding, you're just full of crap. I'm tired of sugar coating things and worrying about offending people. So anymore I really don't even care....People don't want to hear your child has a heart defect, or something's wrong with your babys heart. OF COURSE NOT! WHO WANTS TO? Do you think we chose this? No we did not. But as a CHD Angel parent, when you try to look down on CHD like it's NOT IMPORTANT. You're asking for it...

*More than 50% of all children born with congenital heart defect will require at least one invasive surgery in their lifetime.
*There are more than 40 different types of congenital heart defects. Little is known about the cause of most of them. There is no known prevention or cure for any of them.*In the United States, twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined, yet funding for pediatric cancer research is five times higher than funding for CHD.*Congenital heart defects are America’s and every country’s #1 birth defect. Nearly one of every 100 babies is born with a CHD.*Congenital heart defects are the #1 cause of birth defect related deaths.*Congenital heart defects are the leading cause of all infant deaths in the United States.*Each year approximately 40,000 babies are born in the United States with a congenital heart defect. Thousands of them will not reach their first birthday and thousands more die before they reach adulthood.*Each year over 1,000,000 babies are born worldwide with a congenital heart defect. 100,000 of them will not live to see their first birthday and thousands more die before they reach adulthood.*Almost half all children and adults with complex congenital heart disease have neurological and developmental disabilities.*There are an estimated 2,000,000 CHD survivors in the United States.*For the first time, more than 50% of the CHD survivors are adults.*10% of all CHD cases evaluated in an Adult CHD clinic are first diagnosed in adulthood.*91,000 life years are lost each year in this country due to congenital heart defects.*The cost for inpatient surgery to repair congenital heart defects exceeds $2.2 billion a year.ALL facts are from http://www.childrensheartfoundation.org/about-chf/fact-sheets 

Sunday, October 7, 2012

I miss him.

My thoughts are all over the place tonight. It's been a month since I've blogged. I've been so busy with work and the kids and haven't had much time to get online unless it's on the go on my phone! IF ONLY it was easy to blog from there lol. I've had good days and I've had some bad days in the last month. Today was one of those where all the memories cuz like a knife, where every picture I see of Kayden makes me what to curl up and die because it hurts so bad to look at him and not touch him. I miss him so much, I just can't even say how much because it would still be an understatement. People say it gets easier, or as the years pass you'll learn to cope better or find different ways. I'm still not sure about that. I mean I have learned that you just learn to live with the pain, the hurt and the aching in your chest. It's a part of your daily life after you lose your child. But I don't see where it's gotten easier..only harder. I help other families because it's the only way I feel like I can keep Kayden's memory alive, keep him here with us. By telling his story, and by helping others....but at the end of the day when I have to visit my child in a cemetery, kneeling by his grave and telling him baby we've done it again, we've made a difference in someone elses life, I cry. I cry because he isn't physically here for me to show people, he's not here for me to hold his hand anymore, or to kiss his forehead or rub his back.

Tonight after the kids had went to bed, my mom and I were talking about my grandpa. She was saying she doesn't know what made him so strong, he was such a believer and went to church every single Sunday his whole life. When my grandpa passed away he was ready to go, he knew it and he said so many times he was ready. He wasn't afraid to die. He knew where he was going and he was ready. I asked my mom, how do you think grandpa would have taken it if he was here when we lost Kayden, what would he think?
She said ya know, I really think it would have upset him, she really does. But she said she doesn't know what he would have said when it came to him believing.....Here's what I struggle with. Why does God take children away from their mother's? I don't understand why he takes children away.....I don't get why he put Kayden through what he did and still in the end took him back. WHY? That's what I struggle with the most, and that's why it's hard for me to go to church and pretend like it's all okay....because I'm NOT okay with it...I hate that the kids have to grow up without their brother. I hate that I still have a lifetime to live without one of my children. I feel guilty when I laugh or smile or have a good time....I feel like I'm doing something wrong....Sometimes I feel like I move my feet but I'm staying in one place...I wish I could just go back in time and be with him and freeze time...I just miss him.