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

Friday, November 25, 2011

Happy Thanksgiving..a little late

So I'm a little late but who cares? I hope you all had a Happy Thanksgiving surrounded by friends and family or whoever you spent it with. We had a good day..considering. I have many things to be thankful for. This year I helped mom cook for the first time ever lol. Lexi helped too, she was soo excited to eat turkey lol. She still hasn't stopped eating it lol..When we were almost done, me, mom and the kids went to the cemetery to visit Kayden. I figured everyone would go since it was a holiday but I was wrong, no one else went. But oh well, I guess they didn't feel like they should. Kayden was and is still a part of this family and I think some people forget that. It's his holidays too even if he isn't here with us. We acknowledge the other kids on holidays so therefore Kayden should be acknowledged too. I mean geez he hasn't even been gone 6 months and this is the first holiday without him. It was hard to do but I had to celebrate the holiday for the other kids just like I will Christmas. After yesterday I definitely don't expect people to go on his birthday or Christmas. I'll expect me, mom and the kids and that's all. If everyone else thinks they should go then they will but I won't ask and I won't make anyone. Anyways, who's ready for Christmas? I'm not LOL. I haven't started any shopping at all not even for Isaiah's birthday who will be 1 here in a few weeks AHHH!! Lexi's Christmas Show is next Saturday so I'm excited to go to it! We were going to take Kayden this year, so I'm sad he won't be there. I've been trying to get old pictures from my myspace page to put on facebook, I've got so many pictures. I'm glad I captured those precious memories I will hold them in my heart forever ♥

Friday, November 18, 2011

Lemme see if I can do this

I hope I get through this with no tears. So it's the night before the Congenital Heart Walk 2011 which will be in Richmond, VA. Technically this is the first thing I've done since Kayden's been gone to honor him. He was such a sweet boy. Kayden was always full of life, he taught me and my family a lot of valuable lessons about life. I now think I can face anything even if I'm doing it alone...technically I will never be alone. Kayden will always be around, he was such a special little boy who made the world a better place because he was here even if it was for a short time. I was so afraid when I had Kayden, I remember being scared of how I'd react to him because I never seen a cleft lip/palate which I wasn't upset because of it I just was afraid of it whether it was bad or not so bad....Turns out once I saw his sweet little face, I looked passed everything and saw my sweet innocent baby boy who was born into this awful cruel world. Kayden had a presence very distinct. You could ALWAYS know when he was around or in a room. He made my life worth living(so do the other kids), but Kayden was different. Everyday I didn't know what was ahead of us. I learned to live in the moment, one day at a time. I took things slowly because with him you couldn't rush anything. I've never been a very patient person but with him, I learned to be. I finally came to a conclusion tonight about the holidays coming. Yea they are right here on top of us and yes I will be decorating and I will be celebrating it for my little ones. I can't say it will be harder because, yea it's a holiday but it's just like any other day. So I can't miss him more on Thanksgiving or Christmas than I do today. I miss him every second of everyday of my life and the holidays will be no different. Yea it will be weird without him but I can't say harder because every day is hard with out him here. His birthday on the other hand that might be a struggle because that's HIS day and it will always be so I'm sure people will get sick of me talking about him all day on December 21. But hey, we all talk about our kids..am I suppose to just forget Kayden existed? NOPE never not a chance...and I don't care if it means watching spongebob all day long on his birthday and doing his balloon release..I will. I live with the most awful pain anyone could ever have, I've lost my child, I lost the baby I carried inside for 9 months, I lost a beautiful person who I created I watched him grow for 4 years(including the pregnancy). I will never forget the first time I held him, or his first step, or his first word. But also I will never forget his first surgery, the first time he got discharged from a hospital which was the NICU, I will never ever forget the day I was told my son was in congestive heart failure, I'll never forget while he was getting his x-ray before heading to the PICU, I was pregnant and couldn't be with him so my mom was, he was crying he hated people messing with him and I sat in the room waiting for him and broke down in tears scared to death of what was ahead of us. I will never forget the day of his first cath that he wouldn't survive a valve replacement and probably not a valve repair either. I will never forget them telling me 'his heart's barely pumping enough blood to his body for him to survive'. I will NEVER forget the first and only open heart surgery. I almost broke down before walking out of the room I left him in for him to go to the OR. I broke down as I turned around...I cried the whole time through the surgery almost. I will never forget the wonderful news that my son done wonderful, after he came off bypass his heart took right over...I will never forget when Kayden had to be admitted on June 14, 2011 for him to be evaluated for transplant. I will never forget that last month I had with my son. I will never forget the phone call I got at around 1:30ish am I will never forget my mom telling me 'you need to get up here, we're losing him' I will NEVER forget the phone call I got after we were headed to Charlottesville, the one NO parent should ever get when I heard the words 'he's gone'. I will NEVER forget holding my son and laying with my son the very last time ever. I will never forget laying my son to rest for eternity. I will NEVER forget how strong Kayden was and I will always be proud of him, I'll always remind his sister and his brothers how brave their brother was. 

Friday, November 11, 2011


I've had enough of everything. I really have....everything and everyone just keep pushing me...I could walk around every day crying all day if people wouldn't think I was crazy....Every time I'm alone I do cry...I can't help it with all thats went wrong in the last few months how can I not? I don't know when the world will end and I don't care how bad it sounds I hope it does soon because I don't know how much more I can take...The only good thing I've got anymore is my kids. I'm sick of worrying about money and how shit will get paid. I hate Kayden not being here. Every one was in bed the other night and I just went and sat on his bed and held onto his Mickey Mouse pillow and cried. That pillow was one of the only things I've got that stayed with him until his last minutes on Earth...I keep asking myself why did this happened? Why isn't he here? Where did I go wrong? And I can't help but partially blame myself because I took him to that stupid ENT who fuckin the did surgery on his ear while he had infections and then the following month he was in heart failure. So yea I do partially blame myself for not taking him back home that morning. I try to remind myself that this would have happened anyways but it's hard when some days I honestly don't feel like this is how it should be. I put on a show, people tell me oh you're the strongest person I know. WILL YOU JUST SHUT UP NO I'M NOT AND I DO NOT WANT TO HEAR THAT...I DON'T WANT TO BE STRONG. I WANT MY SON BACK!!!!!!!!! I love seeing others who's kids are doing good but sometimes it just makes my situation worse...so some times I don't know if it's good I have these people still to talk to or if I should just delete everyone so I can keep to myself. A part of me died when Kayden went. And who ever thinks I shouldn't say that oh because 'I still have kids here', well here is what I say to you 'FUCK YOU, GO FUCK YOURSELF'....Kayden was and is my son, he's my oldest son, he was a HUGE part of me, Kayden had a lot of love he had the love I have for my other kids but he also had a different love because of his health and what we went through together....So yes a part of me is gone forever it went with my baby....My heart is broken and it will never be whole again. So I may just die of a broken heart...but oh well because there is no fixing it so I hope people just don't even try...Nothing you can say or do will make anything right because he's not here! I'm glad organ donation saves lives, but ya know what about the lives it doesn't save, what about the ones who still die after they get a transplant? Or how about the ones who never make it because there's a shortage because no one wants to donate their organs...So some days I have mixed feelings about it all.. Put yourself in my position and you'd understand..or maybe you wouldn't because this situation hurts too much to even imagine it.

Thursday, November 10, 2011

One more month....

It's almost been 4 months now since Kayden went to Heaven. Each day that passes I think it just gets harder. As the holidays come I KNOW it's getting harder. Our family always did a lot around the holidays. My mom cooked big Thanksgiving dinners and as we got older it slowly got a little smaller but still BIG lol. Christmas time we always had decorations and lots of presents and a big tree decorated in every spot with ornaments we made in school and things we bought. As we got older our stuff disappeared slowly and when I had kids we got ornaments for them. Kayden has 2 because a friend of mine bought him one and we also bought him one. Sadly this Kayden will be represented with another ornament with his name & dates and also we got a Mator ornament and a Spongebob ornament to represent our big man. Ya know I just don't know if some doctors realize that when they don't do the best they can and it shows that if something bad happens that the parents and a family has to live the rest of their life without a child or a parent or whoever because one doctor made a wrong decision or because a doctor didn't feel like testing for something. I'm sure some people may think I'm looking for reasons and answers. But no I'm not. I can understand I've accepted Kayden will not come back no matter how much I cry no matter how much I beg, he's gone. Kayden is gone to Heaven forever he'll never be back here on Earth. But I just didn't feel comfortable with the doctors this time at the hospital. I think it was a wrong move to take him off the carvedilol and I think the kidney doctor didn't do shit because all he did was listen to Kayden and say 'give him more fluids'....The green vomit no one was testing they just didn't think it was a problem. So yes I think the doctors really  screwed up this time. And because they made wrong decisions and were concerned about everything else except his heart I have to live the rest of my life without my son and my other kids will live the rest of theirs without their brother. Isaiah won't even know his brother. And that alone bothers me. Not to mention I found out the other day from another mom her other daughter has dilated cardiomyopathy she found out last month, her older daughter had a transplant a couple years ago. She also told me it's recommended that the siblings be screened yearly for DCM. No one ever told me this. Her younger daughter had a normal screening at birth and at a year old....I had a fetal echo done with the boys so I know then they were fine but what about now? That's scary. Alexis has never been checked because I obviously couldn't see the future that Kayden would have a heart condition. Soo at Isaiah's one year check up I'll be asking his pediatrician his opinion...Until the next time I feel like venting, enjoy your days & spend time and cherish every second with your family ♥