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, April 22, 2012

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?

Wednesday, April 11, 2012

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 ♥

Friday, April 6, 2012

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 ♥