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

Sunday, March 17, 2013

Without you.

2 years ago today, I left my son in a room for doctors to take him back for surgery. I kissed him and told him how much I loved him & everything would be okay. I walked away, outside of the room, I broke down in tears, sobbing, scared to death that was the last time I would see him. Many times his cardiologist told us if his heart ever stopped it would be hard to resuscitate him. This morning I woke up at 8:00, which was about the time they took him in for surgery. I left him in the room at 7:30. Then I woke back up at 9:30, they stopped his heart and put him on bypass at 9:25. That was one of the scariest times of my life, knowing his heart wasn't beating and his blood was being ran through machines. I remember looking out the window when I got that update, looked to the sky and prayed hard, I couldn't talk much, I just wanted to pray. I got tears in my eyes the whole time. It's a tough pill to swallow when you get an update like that even when you know that's what they have to do in order to make his heart get better. There isn't a cure for congenital heart defects, only treatments...

I never wanted to live in a world without him. I didn't think I would be forced to do that either....I have flashbacks and miss it all so much. I miss him. It's just not fair that there is nothing I can do to help him now. Do you understand what it's like to be helpless when it's your child? I know some of you know what I mean because you walk this road, or you're on the journey with a child who has a special heart. I wish I could change how things happened. I hate this month though because it just means in 4 months it'll be 2 years since my son took his last breath. The months after his surgery were probably his hardest, well April was, May was pretty good for the most part. Then we come to June, that's when he went to UVA and put on the transplant list. Then we know where we are with July.....I hate how fast all this comes at me because it's so close together. Cherish every moment with your babies, because you never know what the next minute will bring you ♥

Saturday, March 9, 2013

Changes

We all go through changes. Sometimes it's easy, sometimes it's hard. I think most of the time it's hard. You can sit here and say through your whole life you've never changed. But you have. It's nothing to be ashamed of it's a part of life. I've done a lot of changing and I'm only 25. Before I had my kids I was hell on my mom, I feel bad for it now but I was a child. I thought I was invincible and nothing could touch me. When I had Alexis I was 18 years old and I was scared to death of this little person who I carried inside of me for 9 months. I didn't think it was possible to be afraid of someone that little. She saved me I believe. When I found out about Kayden's health conditions I changed again. I was terrified not just scared. I was terrified at the what ifs. When I had him and saw he was going to be okay it was s relief. But as he went on with life, through his surgeries and doctor visits, I did more changing. I got stronger, I felt like I could almost face anything but I had new fears as well. I feared for his life, I was so afraid every time he had a surgery. When he overcome his cleft repairs and his heart hadn't got sick, I was relieved, I thought things were going to be okay. When Kayden went in heart failure, my life flipped upside down, I had no idea what to do, no idea what to think....My fear of losing him came back, but I knew I had to hide that and had to be strong for him. Everything Kayden went through I stood by him it made me a better person, it got my priorities straight. When I lost Kayden, the old me died. Now I am someone else...I am a bereaved mother, I have lost one beautiful life I brought into this world. He was so innocent, he was just a baby. No mother should have to bury their child, in this life and my plans, I was the first to go...not him. Kayden was an amazing little boy who fought each battle courageously and with so much strength, he gave me hope. To this day I have that hope, I feel his strength and courage everywhere I go. I made that promise to my son that I would never give up on him, so I fight for his journey to be shared, I fight for our Angels without a voice, I spread the awareness for Congenital Heart Defects & how important it is to become an Organ Donor. A donor could have saved Kayden's life.

We all think about the present time without our children and that hurts enough, but what about the future? I was thinking the other day about Alexis and the boys. How it will effect them. Alexis talks about how she wishes Kayden never would have passed away and how she misses him. Alexis & Kayden are the oldest, there will be things as she grows she will wish he was there doing with her. My heart hurts thinking about when she graduates from high school and I take pictures of her and her brothers and of just her, because I won't have that picture of her and her first brother. My heart hurts thinking of that.....Then we have the boys. Kayden is their older brother, they should have him to look up to as they grow. There will be things that Tavion & Isaiah should be learning from Kayden. I think it'll be hard for both of them, because Tavion will not have his older brother to look up to or to go to when he needs something. Tavion has to be the role model for Isaiah. Kayden would have been an awesome role model as he grew. Just at 3 he was already such an inspiration & such a well mannered little boy. My heart hurts everyday and I'm broken inside. But through it all I continue to change, I am trying not to forget who I am. And sometimes I get lost in life but I will not forget who I am ♥

Thursday, February 21, 2013

Stumbling in the dark.

I've needed to blog for a few weeks now. My heart has been heavy the last couple weeks. The strength I felt once has been taken from me again. Or maybe I've lost it? I don't really know. I just know that in the last week and a half, people I thought gave a crap really could care less. I'm so tired of people trying to make things harder on me. 

When I lost Kayden, I wanted my life to be as little complicated as possible. Not because Kayden made it complicated, but because I missed that life, and just didn't want things to get so horrible that it made me so upset I'd cry every day or night because I missed my life. Things were good, I was going to work coming home, or getting the kids to whatever it may be. Then BAM one thing happens and people start bitching and telling me a bunch of bullshit. So here I am with complications, sorry I can't really say what it is that's going on, but it's aggravating. I thought this person who caused the complication understood and would work with me a bit better. But nooo. Now I'm to the point, I don't want to even try, I'm too tired to even think sometimes, it's just so easy for me to give up, can't they see this & when they make this crap complicated that's all I wanna do. The reason I fought for so long is gone, he's no longer here. My only reason for breathing at the moment, Alexis, Tavion & Isaiah. That's the ONLY reason I'm still here, if not I would have crawled in a corner and died. 

Then on top of all of this, the other day I noticed Tavion's preauricular pit(like Kayden had) was red. A couple of days later, I saw it draining. It was clear so I wasn't too concerned. But you guys can imagine the way I felt, MY STOMACH FELL TO THE FLOOR. I got all the nasty stuff out and it scabbed over & now it's a little red. So we will see. If it drains again I will be taking him to get antibiotics and letting them know all about it since we've got a new pediatrician. I just don't really wanna go down that road again, it was a pain lol. Poor Kayden, his cyst kept coming back and staying infected. & it hurts them when you have to squeeze the nasty out. So HOPEFULLY Tavion's won't be too big of a problem, I know it's simple but please remember him in your prayers and it stays away.

I just feel like someone's turned the lights off on me again, and I'm falling back into my dark hole. I talk to hardly anyone anymore, which is tough. Talking to people is what helps me get through my days. & now all I wanna do is just cry. I MISS MY LIFE. I MISS MY SON. What do you do, how do I get back out of this dark place? I once thought I had it all, I had EVERYTHING. I just don't remember how to get out of the dark, I don't have many people to talk to anymore. Who's going to be there when I let go & fall, I can't hold on much longer?

Sunday, January 13, 2013

Catch Up.


It's been over a month since I've blogged. I'm slacking. December was just been super busy, Lexi's Christmas show, Isaiah's birthday last month, Kayden's toy donation & Christmas. Everything went well. Isaiah got his cake through Icing Smiles, it was Thomas the Train and it was adorable!!! My laptop is broken =[ so I haven't gotten to send them the pictures which I feel awful about. It's hard to believe Isaiah is 2 years old. When Kayden passed, Isaiah was only 7 months old. It's hard on me because Kayden loved Isaiah, he was so good with him & it breaks my heart Isaiah won't know his brother, only pictures and things we tell him. I hope he cherishes those pictures of he & Kayden.

We did the toy donation for the second year for Kayden's birthday. It went well, and it was good seeing the nurses who played a huge role in Kayden's life. & our cardiac social worker, she was there also & our cardiology nurse. It's bittersweet going into the PICU & seeing the room where I last held my son, or last saw him alive. My heart is still shattered, it's still piecing the pieces where he belongs. The doctors and nurses who took care of him, I hope they know how much they mean to our family. I'm so glad the kids had a good Christmas in the hospital with all the toys we brought, & alot of it's because Kayden's life. It makes me smile knowing his life has touched so many families, even if they don't know.

Christmas around here was good, it was still sad missing Kayden. It's one of the hardest things in the world to wake up on Christmas morning or any holiday and missing one of your children. There isn't anything worse. I miss him. There is no changing that, I think of him and speak of him everyday. He's still my life. I miss taking care of him, hospital stays even the stress it put on me. I still miss just being there with him. When I see his pictures and scroll through them, I can still remember being there & in a strange way I think a part of me is still in that time zone. I can close my eyes and just remember every second of it. 

I have been working a lot the last month and it's not going to be ending anytime soon. I'll try better to keep up with my blog this year! My goal's for the year are to get Kayden's Kause a non profit organization & to get our Roanoke Mended Little Hearts group together. Hopefully I can do this soon between working and the kids!! Enjoy some pictures from December ♥

Lexi's Christmas Show 2012

Isaiah's Birthday

Kayden's Toy Donation to UVa

Kayden's 5th Birthday balloon release

Christmas 2012