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, December 31, 2011

Goodbye 2011

I have to post one more blog before the new year! So this year has been filled with a lot of emotion and a lot of heartache for myself and my family...I came into the year not knowing what it would hold, but knowing that Kayden may not be with us but fighting and hoping he would....My big man was here the first 6 1/2 months of this year. Even though he was in and out of the hospital he still kept on smiling and spreading his love everywhere with everyone. He went through open heart surgery in March, a surgery in which his heart was stopped for a little bit. I worried that it wouldn't start again, but he proved us and many others he WAS strong and his heart took right on over after he was taken off the bypass. I can still feel his touch and I can still feel his kisses and hugs. When Kayden's heart got worse after his Boston surgery my heart sunk. I said if the #1 hospital in the country and one of the best peds cardiac surgeons couldn't fix his little heart then nothing and no one could. My heart still hurts for him, my arms ache & I cry at night for my baby. It will never stop. The pain will never go away. He was unique, one of a kind and there will NEVER be another like Kayden.

I've lived with death everyday and I've seen it, I held an Angel in my arms, I've had to do the one thing a parent especially a mother should NEVER EVER EVER have to do. I had to bury my child, I had to try and explain to my 5 year old daughter that her little brother will not come home. This year has been filled with struggles. Struggles I would never be able to get through if it wasn't for my son. Kayden touched my life just like an Angel, it was like he was truly from Heaven from the time I got pregnant with him.

My hope for 2012 is to give me more strength to get through this awful journey I'm going through. I hope to finally get the foundation started for Kayden that will hopefully help other heart families in need. Kayden was special and his life should be shared with others. My heart will never be healed but one thing I do know is true & thanks to a movie for reminding me, find the one thing you are most afraid of & instead of running away from it run towards it. Some days I think I'm afraid to face the fact I lost my son, so from now on instead of trying to run away from it I will run towards it and cry and scream and kick because it will help me for the moment. I'm afraid to get myself back into the world, I'm afraid bad things will happen because it seems as if bad follows me. I feel like I'm waiting on something else to go wrong. I will no longer run away I will fight and get through this all of it. I will carry Kayden with me EVERY WHERE I go. He is a part of me and he will always be. I kind of felt as if I am leaving him behind in 2011, but I'm NOT, Kayden is with me, he is a part of me. He is going with me into this new year and he will guide me through it and I will make it and come out on top. I love him and Lexi, Tavion & Isaiah more than this world. I hope you all have a wonderful New year & I hope 2012 brings you strength, hope, love & happiness ♥

Friday, December 23, 2011

Just a girl trying to find her way

I can not believe Christmas is already here. Really it seems like it was just now 2011. Where has the year gone? I don't know about yours but I know for me it's been the worst year of my life...I'm not even going to get into it because you've probably read about it all in the past blogs of mine and if you are a friend of mine then you know my struggles and what I deal with daily....Anyways, at one time in my life I knew who I was and who & where I wanted to be. But anymore I'm just a girl, just a girl trying to find her place in this big world...I wish I could figure it out but it's so confusing most days...I guess one day I'll find out who I am again. Until then I'll stay lost in the rain and stumbling over my own to feet like always.....One day I'll find someone who loves me for who I am & want to be in my kids' life...if not then oh well I'm kinda use to doing it alone...I always wanted a family but anymore I just want me and my kids...the rest is just trouble.
Wow so Christmas Eve....It seems like it should still be June!! UGH, I already know the next few days are going to be emotional hell for me..I miss Kayden so much and hate he will not be here but I know he is having the best Christmas EVER in Heaven this year & forever...I'm so glad he is no longer hurting but the pain I feel is horrible...I wish I could kiss him or hug him or talk to him...I caught a little bit of his smell the other day in his room....yea I guess you can say I'm crazy but I did and I knew he was there ♥ I miss that little man =[
So if I don't get to write again before Christmas I want to wish you ALL a MERRY CHRISTMAS!!!! My heart goes out to all of my other Angel mommies this year I'll be saying a special prayer for all of you ♥

Tuesday, December 20, 2011

Struggles Make us Stronger

Today we took the toys to UVa that I've been getting from different people and buying myself. We did this to honor Kayden for his 4th birthday which is tomorrow (December 21). I was nervous about it, because I didn't know what to expect going into the PICU. I mean that's the last place I saw my son alive, it's the last place I heard his voice, the last place I held him, laid with him, and felt the warmth of his skin....when he was warm..not joking either if you have a heart kid you understand. So on the way I was feeling all kinds of ways but something came to me, the quote 'life isn't about waiting for the storm to pass, it's about learning to dance in the rain". Kayden taught me that this quote is TRUE!! I mean I did not realize that until today, Kayden did not wait until the storm was over but he enjoyed his life even though he was sick, he was strong, he was an inspiration, he always was my inspiration from the first second I laid eyes on that handsome little baby....For every struggle we face, we will ALWAYS come out stronger, because we are still standing. Anyways, when we got there we took the stuff to the volunteer office & met up with the social worker who is amazing and was SO much help to me & Kayden while he was sick. I always got to see the transplant nurse Sara, she is so amazing. She always answered any questions I had and left my mind at ease when I would worry. Seeing her almost made me cry but I didn't so I was proud!! First we went up to the 7th floor and took a bag of toys to each tree on the Peds floor. Then it was time for the PICU....that was scary but I wanted to and I NEEDED to go in there. I had to. So I took some and put them under the tree and left the rest in the bags for the nurses to wrap..lol I hope they have fun it was a lot!! Then I got to go visit a baby who's mom I met while Kayden was in the hospital...She is also a heart baby who is fighting. She is strong and she's proven those doctors wrong just like Kayden use to, she was in the room right next to Kayden....it was hard to walk by the room and not have the flash back of the night I walked in and my mom was holding my child's lifeless body....I hated that part...but I remembered what I was doing there...I was there to make these kids Christmas better, to make them smile even if only for 5 minutes!! I want them to enjoy the toys they get because for some it could be their last. Kayden's last gift from the hospital was a puppy pillow pet, which is on his bed ♥ When we were finished I felt good, I felt a sense of peace come over me. I think it's what I needed to help me move forward. I have to admit I have been blocking some of it out to not remember that night...but I know I have to face it to bring myself peace. It was hard seeing his nurses, but they remembered he loved Spongebob when they seen the matchbox cars that were Spongebob. Kayden was such a loveable little boy, yes he did have his days and if he didn't like you well there really was no changing that lol. But EVERYONE who met him loved that baby. There was something about him. I think Kayden was truly an Angel sent down to Heaven. When I had my first ultrasound with him, Kayden wasn't there, kinda like wherever he was in this world he just wasn't done yet so he had to finish before he came to me...2 weeks later I go back and there he is....On the way home, the clouds were freaking breathtaking. They seriously looked like Angel wings with Heaven shining through....They were so beautiful, I wish I got a picture for you guys but I was driving lol. I am so glad that Kayden's life will touch so many now. They may not know him, but I know that because of him is why I did this, I know that there is a child in Charlottesville tonight or tomorrow that will have a toy we brought, that would not be there if Kayden were never here. 

Kayden touched us all in many ways, me as his mom. I am SO proud of it, I am proud to say Kayden James Barnes is my son, I am proud to tell people how hard that baby fought through every surgery he went through, how he took the IV's, blood draws, meds, xrays, etc like a little champ. I love my son, I will ALWAYS love my son and today I hope I made him proud of me like I am of him. This helped me I think I'll be able to get through his birthday tomorrow and through Christmas by knowing my little man's life is finally starting to make a difference for others ♥ I plan on doing this every year for his birthday & I'm going to hopefully soon be helping out more with just the heart families as well ♥ 
As I bring this to an end tonight, I hope you all have read this and I hope it has helped you realize what is important over the holidays and not just now, but all year. Our family, that's what matters....Don't worry about your struggles, don't stress over it because they will make you stronger always...Dance in the storm because sooner or later it'll come to an end, so enjoy every second of it. I'm so glad I made everything as close to normal as I could for my little man ♥

Monday, December 19, 2011

Not ready for this week...

This week is going to be hard and it's already started..I wasn't ready for it like I thought. My best friends mom passed away last week on December 14. Today was her funeral. I thought I'd be okay but who was I fooling? It was the first funeral since Kayden's, she passed exactly 5 months after him & she was like a mom to me. I practically lived at their house growing up. Her mom was a wonderful person and very strong. She too lost a son, the year before me & Krystle met. I said a few words today and I broke down, it was hard but I'm glad I got something out. Her mom was a great woman and I have a ton of respect for her. I have to be happy for her though she is reunited with her son who she's lived without and missed for many years.
Tomorrow we are taking toys to UVa's PICU in Kayden's memory for his 4th birthday..This is going to be hard there is no way around it. It's the last place I saw my baby alive, it's the last place I heard him talk and held him close. I miss that little face, I miss his smell, I miss his voice, I miss his touch...One thing I've learned is not all things heal with time. They just don't and this is one thing. It will NOT get better, this is the rest of my life right here and I have to try and make the best of it for my other kids' sake.
Kayden's birthday is Wednesday and we will be releasing 4 balloons for him and a wish lantern. I feel like a shitty mom because I haven't bought 1 present, 1 decoration...NOTHING. I should be having a birthday party for my little 4 year old. It's still hard to believe sometimes, but I remember quickly as it's in my face everyday that he is no longer here. I love & miss him more than you could imagine  ♥

Tuesday, December 13, 2011


Oh I'm so sorry Misty, let me know if there is anything I can do for you!! Even if it's to watch your kids I will!!! Well that's what I heard 5 months ago when Kayden passed away...WHERE ARE ALL OF YOU NOW? Oh so it's been 5 months I should be over it right? Or I shouldn't need anyone to watch Kayden's brothers so I can do to class and finish my degree so I can attempt to start some kind of life and have some stability for them....Yea thats what I thought there is NO ONE...People say shit at the time because that's what everyone else is doing and that's the 'right' thing to do...Well ya know I don't want to hear it unless you freakin mean it....Funny I have a few select people who still check on us to be sure we are ok...Most of them have lost a child too! My mom is the ONLY one in my family who tries to help me anymore, but she has a bitch of a general manager so therefore she can't get off the 2 mornings I go to school...And if I found someone next week, too bad I will not go next week because I'm taking the toys to UVa to REMEMBER MY SON and his birthday is next Wednesday and I will NOT do anything that day except things to remember him. I'm so tired of people not helping me so, I will not be helping any of them anymore!! So now on to my second plan, I'll go to CNA classes when we get our tax refund which will be a 7 week program in the evenings.....That way my mom can watch them and I won't have to find anyone....All I have to say is NO ONE better ask me to help them again....It's ashame when your own family can't even help you anymore, that just shows this world is really getting extremely bad.

Monday, December 12, 2011

Christmas Parade, Ballerines, Birthday Parties & so on...

It's been a little over a week since I've said anything so let me catch you all up. So we went to the Christmas Parade Dec 2. It was okay, I've seen better ones here in Salem. I was glad that Kayden got to see a great one last year, they had so many pretty floats last year..This year it seemed like more people were walking and not many decorations...Tavion of course wanted to run around like he was crazy and got aggravated sitting there. So my mom took him behind us in the grass so he could run around..Then Isaiah got fussy towards the end so I chilled behind everyone with my mom and Tavion lol.
This is Kayden last year at the parade ♥

Alexis had her ballet Christmas show, they did so good! She loves dancing. Again I think last years was better but it was still cute!! She got to be an elf in it & did so good! I'm so proud of how well she's done and this is her second year!! We are thinking about putting her in voice, she LOVES to sing and gets mad at me for not recording her lol. I'm not sure if I want to wait another year or go ahead and do it...I guess we'll see. I'm super excited for their recital in May she'll get to do tap & ballet!!
Lexi after the recital ♥

ISAIAH IS ONE!!!! Okay so technically not yet, BUT we had his first birthday party and had a lot of fun!! Sad Kayden wasn't physically here to help blow out the candle or help Isaiah open his presents! But we know his spirit was here!!! He loved his baby Saiah!! We all got cake in the face except my mom and sister..Go figure lol!! I got it up my nose and I think it's still screwed up because of it...Alexis had it in her ear, Tavion has blue hair & Isaiah got it shoved in his face along with Lyndsee lol!! My sister has all the real good pictures of it because my camera died...go figure I've got the worse luck in the world..

Anyways, Kayden's birthday party was going to be this weekend on the 17th....My heart is aching this week and next and probably the rest of  2011...Let's just say this year has officially been named THE WORST YEAR OF MY LIFE. Instead of lighting 4 candles on a cake, or opening birthday presents & eating cake and ice cream this weekend...I'll be going through toys organizing them to take to the hospital the day before his birthday in his memory!!! So far we've got a good amount I'm so happy, I was worried about how many we would have but we're doing good and still have some to get thanks to those who've sent money through PayPal!! Everyone who donated is an Angel on Earth, they are amazing people for helping remember my son!! On Kayden's birthday we'll be doing a balloon release blue & yellow, Spongebob theme like his party was going to be ♥ I miss that youngin and I will never stop!! I go through the stores and say OMG I bet Kayden would have loved that...I'll probably be doing it 20 years from now...like the moon on the wall I seen at Wal-Mart last night..Kayden would have LOVED it!! He loved the moon I can still here him saying. Night night moon ♥
I'll end this blog with Kayman's moon song so whenever you read this today or tonight, when you see the moon next you will remember Kayden even if it's only for a moment ♥
I see the moon and the moon sees me
The moon sees somebody I want to see
So God bless the moon and God bless me
And God bless the somebody I want to see.

Friday, December 2, 2011

December be nice.

Gosh I can't believe it's already December. I still feel like I'm stuck in July sometimes. I guess that feeling will fade with time. It's scary & hard to move forward but it's oh so dangerous to look back. So tonight was the Christmas parade, I was disappointed because it wasn't as good as previous years. I'm glad Kayden got to see all the awesomeness in it last year lol. I missed him terribly tonight but I'm sure he was there probably sitting on top of the firetruck with Santa lol. Tavion was a little brat but what else is new right? lol the girls had fun of course, especially Santa ♥ Life is so easy when you're young. Sunday is Lexi's Christmas show I'm so excited to watch them, those girls really work hard!! I'll try to get pictures of it to share! Some times they don't turn out very well.

Anyways, December is a busy month for us, Isaiah will be 1 on the 16th, his birthday party is next week as I had planned months ago & Kayden's was going to be the 17th because his 4th birthday is on the 21st. I'm still taking new toy donations for the toy drive I'm doing for the PICU at UVa. I'm a little disappointed because I haven't gotten many and a lot of people said they'd send toys. So since I'm doing this in his MEMORY I'm sure some of you may see why it's disappointing and upsetting to me. We're also doing a balloon release on his birthday for him so if you'd like to release a balloon for Kayden on his birthday the theme is yellow & light blue for Spongebob!!!  Christmas will be hard this year so I'm trying to get the tears out now, I've cried every night the last few days. I miss that little face and his little voice. I have to listen to his videos some days because I miss him sooo much and just want to hear him. When I hear that voice it will make it better some days, but others it makes it worse.

One thing I've seen lately, a lot of people don't want to hear a word Angel mommies have to say with their experience...or maybe it's just Kayden 's & my experience. I'm tempted to just delete everyone no my facebook except my Angel moms & people I know personally. I mean I loved hearing the experience of our CHD Angel's because something that happened to them I tried to be sure our doctors didn't do the same..unless it was absolutely needed. I don't know, maybe they mean nothing by it by not responding to what we say...but maybe they should at least acknowledge when we speak so we don't feel like we're being ignored. My son faught his hardest and I hate saying he was weak so I say Kayden was tired so he went to sleep, he was FAR from weak so I dare someone to say that. I guess we'll see how it goes, if people do keep ignoring what I have to say when it comes to suggestions, or experiences then I will be deleting people from my facebook. I don't need them if they don't want to acknowledge my son was alive and my son did experience similar situations. Happy Holidays everyone! I hope they treat us all well especially my Angel mommies ♥