The struggles make you stronger

Happy Fourth of July everyone who comes across my blog ♥ I hope you have a fun and safe holiday!

Today is a little bittersweet on this end. It was Kayden's last holiday with us, he was still vented and before he got chorea so at least he was communicating like his self..Kayden didn't like the fire works, he would say 'too loud' and he'd cover his face. So last year, he had a decoration from my sister and he'd pull of the little stars on it lol! He was so silly! Today Isaiah is wearing Kayden's fourth of July shirt from 2009. After Isaiah it will get put up with everything else. It's so hard to get rid of things that were his. Eventually one day I'll go through his stuff again and get rid of a few things...maybe. Or Alexis can once I'm with Kayden in Heaven.

All today really means right now to me is I'm at the official count down, 10 days until I got the worst phone call of my life. 10 days away from the last time I held my son in my arms, 10 days since the day my little boy went to live with the Angels & earned his wings. Kayden was a fighter, he did up until the very end. I do not feel like he lost his fight with his heart, I feel he beat it, Kayden beat his CHD. Going to Heaven isn't a punishment, it isn't losing, it's WINNING. He is so much better off than we are. Kayden was chosen before he was born. He was hand picked and his dates were written, when he was called home, he had Angels waiting for him. To go at a young age like Kayden and many others, they have to be a very important piece of Heaven, so at least I know I've got a piece of Heaven watching over my family & I carry it with me always.

I'm glad I didn't know last year that I only had 10 days left with him, I'd rather our last days together be filled with smiles and memories, not sadness. Kayden didn't need to see that. Some things and this is one, we are better off not knowing. I have learned many lessons in this short year. One I want you all to know is do not take life for granted, when you feel like complaining about hospital stays, please remember there are people out there who would do anything in the world just to be by their child's hospital bed. And remember those nights before when you were afraid it would be your last night with your child.

All I do is keep having images pop up in my head from last year in the hospital with him, or afterwards, I keep feeling myself in those situations, and when I let the walls up for a split second, the tears come and won't stop. The last two nights I've cried myself to sleep. I know I'm going to feel like I'm losing him all over again, except this year I can't hold him on the 14th like I did last year, I won't be able to kiss him on the head and tell him how loved he is and will always be. I did promise Kayden I would be beside him every step of the way. I promised him I'd fight for him until the day my heart stopped beating. That is a promise I do intend on keeping. So I do not care how many people get tired of hearing about CHD, I will preach to you about it, I will shove it down your throat. I will never stop because I know the awful reality of CHD, I've lived with every mother's nightmare the last year and I will live it for the rest of my life. All I can say is people truly can die with a broken heart. My heart will be broken forever. Our family is like a puzzle that's missing a piece, and that piece will never be found until we are all together again.

1 year down, lifetime to go

I can't believe that I've started the last month of the first year without my son. People think that I'm better, truth is no I'm not. I'll never be better. I wake up every day not knowing what it'll be like. Some days are ok, some are pure hell. I know I'll be falling to pieces as soon as June 28 gets here. I know exactly 2 weeks later will be when my son went to Heaven. I miss him so much, I wish I had an idea of when I could see him again. I mean at least while he was here I got to look forward to seeing him in like 2 days. Now all I can say is I will see him again one day. One day could be 60 years from now, but to be honest I don't know if I'll make it that long without him. I believe people can die from a broken heart. When I die my heart will be broken because I lived so many years without my child, without a piece of me.

Soo for Kayden's Angelversary, we are going to do a balloon release, I'm asking only a few of my good friends who've been there for me to come. When I say been there, I mean the ones who didn't disappear after his service. I had a lot of people who disappeared afterwards. And that's when I needed people most. My GOD I LOST MY SON! It's not like losing a parent, husband, or friend. IT IS YOUR CHILD, A PART OF YOU. I've always said there is no love like a mother and her son. I formed that bond with him when I carried him for 36 weeks. I loved him from the first time I heard his heart beating. That is something no one can possibly understand unless they've got a child I guess. And even still some people may not get it. So anyways, I do ask anyone anywhere if you remember please release a white balloon for Kayden for his 1 year in Heaven ♥

So I told Kayden one day that I wish I could just hear his heart beating one more time. The most amazing thing happened. I did! I did hear it! I found a video of my detailed sono of Kayden & Alexis. We watched Lexi's then put Kayden's in & sure enough when they were measuring beats per minute I HEARD HIS HEART BEAT! My little Angel is still helping me now! That is amazing, I'll cherish it forever because I can hear his heart beat any time I want to ♥

Until next time....

Broken for a lifetime....

Geez, it's been like a month since I've blogged. I guess I'm past due.

I got a job, finally after what 10 months of looking pretty much? I started looking in August. It's not the best in the world, and I hate it but it's a job and it's money. Yep, that's right I hate it. I've never liked fast food and never will, but besides that. I liked taking care of my son and that is what I'd much rather be doing than out working. I'm still trying to adjust to it, and so far not having luck. Every evening when I get off I go to the cemetery to sit with Kayden....last week my first week, I cried every day one day a good half hour. I miss him so much and working and acting like things are okay, being around all those people who have no idea about him or who he was just makes me sick to my stomach that they don't know he existed. It makes me sad also.

My life has never been easy. I grew up without a father, my mom did all she could for us to be sure we had what we wanted. I was a hard kid to raise because I always wanted the opposite of what she wanted me to have or what she wanted me to do I do the opposite..I guess that's how I ended up with 4 kids before I'm 25 lol! My mom went to work to take care of us and after that, my school work went down hill and I would lay out of school. I regret that, I wish I would have graduated with my class instead of getting my GED a year early. I got hit by a car when I was 14 and lived with only a fractured back, bumps, scratches & bruises. I met the father of my kids when I was 16 years old. I got pregnant and lost a baby right after turning 17...I had my first baby a week after turning 18. Then I just kept having them lol! No but really, I did have kids at 18, 19, 21 and 22. I never would have thought I'd lose a child at 23. I did though, I lost my 3.5 year old at age 23. I've raised 4 kids practically on my own with help from my mom. Now I'm trying to make it in this big ole world. I smile daily and talk and laugh with people. I talk to strangers or well my customers daily like I'm perfectly fine, I put a smile on my face and I'm 'happy'....but I've got a secret for you.

I feel lost, alone, and afraid.

I'm lost in the world, I feel like I don't know who I am anymore. With Kayden I knew who I was, I enjoyed taking care of him and I had a somewhat stable life. He was very sick, yes. But we were happy and we were secure in our life. I keep asking myself..WHERE DID WE GO WRONG? What happened? I feel alone, because with Kayden I felt like I had someone, I know I have my other kids but I don't have him. My family will never be complete. A part of our whole is far away from us. I'm afraid I'll forget who I really am in the world. The world has a way of corrupting people. I'm afraid it will me & I'll forget the person I am. I am a mother of 4 kids, I'm a mother who lost her child to a congenital heart defect, I want to make a difference in the world for another family in memory of my son. I want others to KNOW my son's story. But  working all the time I'm afraid I'll forget all of this. Or afraid I won't have the time to do any of it or remember who I am and what I've been through. No matter what though I will NEVER forget my son.

This month is hard on me, June 14 will make 11 months since I held my son for the last time. It also makes 1 year since he was admitted to the hospital to be evaluated for a heart transplant and listed. He was admitted in cardiogenic shock. June 28, makes 1 year since my son was listed status 1A on the transplant list for a new heart. My heart hurts when I think back and say this time a year ago I was taking care of a critically ill 3 year old and that life was easier than this shit I deal with now. I ask God all the time why he took my son. It makes me sad because not many of you know either that I also had a very serious birth defect. I had a congenital diaphragmatic hernia at birth. I had surgery at only a few hours old & my mom was told I probably wouldn't make it. But I did, I'm a survivor as many of my CHD friends are except I'm a CDH survivor. My mom didn't know about it when I was born, so they weren't expecting it but when I had trouble breathing they rushed me to the NICU. I don't understand why God let me live and not my son. I wish he would have just let us both live because now I live with this pain every day of losing my son.

I don't know how else to put it except, no one has a perfect life. There is no such thing as perfect, if you think life is perfect you need to be hit with reality. Reality is me going to sit by my child's grave and cry daily. It's having to send goodnight kisses to the sky every night or hug a Mickey Mouse pillow to get a little scent of Kayden because it was with him until he took his last breath. It's having to explain to my 2 sons and my daughter what happened to their brother when they become an age they can understand. It's having to explain to them that no matter where they go in life that their brother is their guiding light, he will shine bright just for them and watch over them & keep them safe. It's having to release balloons on the anniversaries, or birthdays or special days instead of cakes and presents and games! So when you think you have a perfect life, stop and remember reality could hit you at anytime so stop pretending to be a teenager still.

When you think your life gets hard...just remember all this sweet little boy went through and still kept a smile on his face ♥ ily Kayden James

10 months..

I've been slacking on my blogging. I just haven't had the time and really I don't right now because I'm so tired!! So yesterday was 10 months since I held my son for the last time & told him how much I'd miss him & already did....it was 10 months since Kayden went to Heaven & it was a hard day, it's in the double digits now....meaning in 2 short months..it'll be 1 year since I've seen that precious face. I realized I hadn't gone through his pictures in a few days and when I did I cried. It was so hard. I miss him so much and I wish things were different. I see so many posts about faith and mending little hearts and although I've seen the mending of little hearts, I've also seen the broken little hearts never be mended, but yet faith remains.

I do celebrate for these families but my own heart is shattered as I do. MY SON WAS MY EVERYTHING. My one fear was losing him. Now I'm afraid of him being forgotten. I'll be doing a donation for Kayden's 1 year Angelversary. This will be things given to the pediatric classroom at UVa, the teacher there was amazing with my child & I want to help her. We'll also be giving things to the Ronald McDonald House. Again in December, I'll do his toy donation which I hope is as big of a success as it was last year.

Somethings I realized the other day and I hadn't really thought about it until then was the first's Kayden will never experience, he'll never have his first day of school, his first t-ball or football game. He'll never have his first dance at school, or his first A on a test. He'll never get to drive a car or have a job. He'll never have his own family.

This all breaks my heart, our future was stolen from us it seems. Kayden will never meet his nieces or nephews that his brothers or sister have. I can't help but think of those things. I wish we could go back in time so I could be with him again, just to feel him. Kiss him. Tell him how much I love him.

Saturday is Lexi's dance recital, we were planning on taking Kayden this year. I hope he'll be enjoying it from Heaven and hopefully he'll be cheering for his sister to do well instead of laughing at how funny she looks lol! He always would say sissy silly. LOL! She's excited & so am I. I can't believe she only has a few weeks of school left & her kindergarten year will be over WOW. Where has the time gone?!

Well I finally got a job, & will start soon. I haven't told many people where because I don't want a few people knowing where I'm at. But it'll get me & the kids our own place within the next few months. YAY. I'm excited about having my own place with the kiddos. Nervous but excited.

Tavion's birthday was on Sunday, Mother's Day....my first without my big man =[. Tavion is now 3. I have two 3 year olds....one lives in Heaven though. I'm so scared. I feel like something is gunna happen to him to. I wish I could overcome that fear...but I can't so I try not to think about how old he is....His birthday cake was Cookie Monster..because Tavion LOVES cookies and I call him cookie monster all the time lol!! His cake was made possible by Icing Smiles, they provide cakes for medical children & their siblings. Also, siblings of a medical child who's gained their wings within 2 years....They were so amazing and what they do is awesome! Bread Craft in Roanoke made his cake and it was just amazing I loved it! I'm so thankful they were able to help us!!!

I'll try to blog more often I just don't have time when I'm so sleepy & so busy all the time!! ♥

If only..

I had a hard day the other day and then I'm having another today. My heart hurts everyday but a little more today. I feel sometimes I need to take a break from facebook, twitter, or whatever it is. Now I don't want anyone to get pissed or take offense to what I say because trust me if you ever walk this road, you'll probably feel the same way.

I am SO happy for everyone who has had a chance to get their new hearts or who's child is still here even though they haven't received their gift. But I can't help but ask WHY, WHY didn't Kayden?! I just don't understand why some people even have more than one chance and get their gift, or more than one kid who gets a heart. I mean I couldn't even get 1 chance for Kayden, how is it fair?! If I did something wrong I wish I knew what it was. I mean geez he waited 2 weeks, that's not what I call waiting, that's his doctors waiting too long to list him. I also just don't understand why it took 2 weeks to get him listed but everyone else at other hospitals it takes a few days. WTF. So if I went wrong anywhere I think it's taking him to UVa, funny because any other transplant patient I've known at UVa wasn't as bad as him, they weren't vented their whole stay basically, they were sitting up playing. Kayden was playing sitting up maybe what a week & a half out of a month in the hospital!!

I just wonder what things would be like if he got his heart. I wonder how he'd be with his brothers and with Lexi, I mean he'd be 4 now so he would have obviously changed. I wonder if he'd be doing well in preschool, at home of course. I wonder if he'd be potty trained yet because God knows he hated the potty LOL! I did anything and everything I could for him, he was my life for 3.5 years whether it was caring for him with his cleft, or his heart. Or if it was just being his mama! I made him my life, that's more than some people do so WHY DID GOD CHOOSE TO TAKE MY SON?!?!

I know I can't continue to be mad at God, and I think I'm over that really, at first I was mad, I was mad at everyone, God and the whole word because my baby was taken from me. Now I just can't understand it, I guess I'm not suppose to but it's enough to make me crazy. I feel like I'm on a dark road with no lights, my lord does it ever end?! I don't go to church, I do believe in God and I have him in my heart or else I wouldn't have made it this far & he knows it. But I don't go to chuch. I want to. But I can't. I cry when I go, and I don't know why, maybe I am still mad at him for taking Kayden and I just won't admit it. I don't feel mad but maybe I am. I don't have anyone to really talk to about this with, I don't want to talk with my mom because she's like me she misses Kayden with every bone in her body too. I don't know how to get over it and stop crying when i go to church, I mean I've got a bunch of strangers staring at me like I'm crazy because I cry during the whole service lol! But geez how can I not?! He has my son beside him and he should be beside me!!! How do you deal with a situation like this?

There's always sunshine after a storm ♥

That title is a little corny, right lol! Well, GREAT news. Tavion had his echo with Kayden's cardiologist on Monday & today Alexis & Isaiah went. They all have normal hearts! That is such a big relief, I was so worried. I wouldn't have stopped until I got them checked. Kayden's heart was always so different, and for that he'll always be special. I've tried explaining to people how unique he was but not many people quite understand that. Kayden had dilated cardiomyopathy & they though ebstein's anomaly at birth. His DCM wasn't like a normal case, his was on the right side. & it took 2 years well when he went to Boston to decide his ebstein's really was just a displaced tricuspid valve with severe regurgitation..His cardiologist still hasn't seen anything like Kayden's DCM & Kayden was diagnosed prenatally so it's been a little over 4 years. If I could go back and change anything about Kayden's medical care, it would be to do his transplant work up sooner so that way they could have just listed him and the transplant stuff would have been done, maybe he would have waited longer or got his new heart. I hate wondering, but I guess it's human nature to wonder and second guess. Back to the corny title, no matter how much I miss Kayden, the sun has started shining because the other kids hearts are good, we have a clean slate and hopefully it'll stay that way. I'll always know in the back of my head it's possible they could develop DCM later in life so I'll continue to watch them closely but for now I know they are fine ♥ I miss my baby boy more than anything and if I could have him back I'd be the happiest mom on Earth!

Tomorrow I start my refresher math course and my nursing classes start next month. I'm one excited mama, I've got a 250 word essay to write on why I want to become a nurse, which I think will be easy to write, if I could just get it started lol! I hate starting essays haha they always sound funny!! I just wish my inspiration was here to see me doing it! It's all for him!!

On another note, I'm hoping to get more members for our Mended Little Hearts group in Roanoke, so far I've only got a few people. We still need like 7 more to actually have a meeting and send in the paper work to get chartered!! AHH I wish things happened over night, but I know all about waiting so I guess that's what we continue to do ♥

It's been awhile..

I've been neglecting my blog...ok so not really. I've just been so sleepy anymore at night and can't hardly keep my eyes open. SO since I just woke up about an hour ago, now is a great time to catch everyone up!!

Soo I've got exciting news, I start school on May 14 for Practical Nursing...Hopefully in the next 15 months I'll be an LPN after passing the exam. It's a 14 month program but to start out I'm gunna probably take a refresher math course. IF it were a 14 month, my graduation date would be July 14. That day will be a date I NEVER forget, **takes deep breath**, it's the day my son left this world, he took his last breath & went to live with the Angels. It's hard for me to believe that in 3 months it will make 1 year since I was forced to say my final see you laters to my child. That makes me so mad, he should be here to hold my family together when I go live with the Angels...And it hurts my heart now & will forever. I love and miss Kayden with EVERY muscle, bone, whatever in my body & NOTHING will change that I don't care how many people say it gets better, well it's been almost 9 months and it's gotten worse if anything I miss him so much...Although I did read in a book it was something like this--When all you see is your pain, perhaps that is when you lose sight of me. Which is true, so thankfully that isn't all I see, I still have happy times, but I do cry, and I do hurt..BUT I can be happy because Kayden is happy.

Today officially started Alexis & Lyndsee's spring break. They are out until the 16th, so I'll have tons of fun trying to keep them occupied lol! They are already fighting haha!! They don't get along but I guess that's to be expected from 2 girls the same age.

Monday afternoon I'm taking Tavion to Kayden's cardiologist to have his heart checked, Wednesday I take Alexis & Isaiah. Please say a prayer for them that their hearts are fine. Tavion & Isaiah had fetal echos which were fine, but if you know DCM well then you know it can develop at anytime & also Kayden's cardio said fetal echos can't tell everything so it'd be a good idea to check them. Alexis has never been checked. Tavion is the only one I have worries about. He doesn't eat much which maybe it's age but I have nothing to compare it to when it comes to boys, Lexi never went through the not eating stage & neither did Lyndsee they've both always been pigs haha! Kayden ate all the time until his heart got worse then his appetite was the first thing to go...So just some extra prayers please.

I know praying doesn't help everything. I don't care how many people say that's not true, but I have proof. I prayed every night & day over my son for God to keep him here. We had people all around the world praying for Kayden...& God still chose to take him home. So I know praying doesn't always help. Some say they are thankful for unanswered prayers. But that is one I will NEVER be thankful for. I will not wish Kayden back because I know he's better off in Heaven BUT I would love to go back in time and pause it for a little longer so I could have more time with him. I miss everything about him. Sometimes I go open his drawers in his room just to see his clothes, I can feel him and see him in everything still.

Until next time loves, have a great Friday & have a GREAT Easter Sunday & enjoy it with your family ♥