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

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 

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