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, June 8, 2014

I'm not who I use to be....

Today at church got my mind thinking. Not only did our pastor's wife sing one of my favorite songs ever, 'Redeemed' but the message really spoke to me. Spoke to me enough to blog about tonight and hopefully inspire someone. I have a lot of ghosts in my past as we all do, a lot I've done I'm not proud of. A lot that still haunts me by people I've known from long ago. They always bring up well I remember when you did this Misty, and I am like yea I don't even know who that person is anymore. It frustrates me that they bring those times up because I have pushed them to the back of my mind and forgotten them. I have asked for forgiveness I have gave my heart to God and I am doing my best to live right and stay true to him. I do need renewed sometimes in my walk and relationship with Jesus. When I feel like I'm failing him I pray about it and I will tell him Lord if there is anything I'm doing  wrong and not realizing it show me so I can change that. I mean I don't do much anyways stay home with the kids, go to moms and go to church lol. Facebook and blog. That's practically my life anymore. I don't go and drink and I don't do drugs. I'm not out here killing people, so yea I'm believing I'm doing what I'm suppose to yes we all can do better. Look what he did for us. So I know I can do better....

Honestly, I can't tell you when my relationship with Jesus Christ actually started. Maybe from the moment I was born or maybe it was not until 9 months ago when I started going to church regularly? I know I've always believed. I've never doubted there was a God. I thought I was invincible as a child and teenager as most do. But when I look back, our God is powerful, he is just amazing, he heals and he protects. Few people know unless you have known me forever know that I almost died at birth. I was born with a diaphragmatic hernia, I had a hole in my diaphragm so all of my stomach contents were in my chest cavity, I had to have surgery at only hours old. The doctors told my mom I probably wasn't going to survive...but I beat the odds and did make it. I was stubborn and a fighter but I had a God looking over me he knew I would be someone someday. I had another surgery at 10 years old due to scar tissue growing on my intestines and they had shifted, I probably could have died then if I wouldn't had went to the doctor. Since then I haven't had any issues out of that, though I'm reminded of that all the time, I have a huge scar going up my stomach from it. Again in 2002 I got hit by a pick up truck, luckily again I had a God watching over me and it fractured my back. I remember the impact and I remember hitting the ground. I remember trying to stand up and felt like knives poking out of my side. That could have been much worse...I continued to live my life as an invincible teenager though. Didn't change anything I was doing. Though you'd think by then I would have learned.

At 17 I had a miscarriage, that opened my eyes a lot and when I got pregnant 2 months later I was scared to death something bad was going to happen but 6 days after my 18th birthday I gave birth to a beautiful baby girl. She was healthy as could be and a gift from God! But then at 19 my life took another drastic turn and this I believe is when my faith actually started getting tested finally, I believe now this is when God wanted me to start my walk with him, though I guess I was completely oblivious to it. I gave birth to my second child, another wonderful gift from God, a miracle. A son this time, Kayden James Barnes who was born with some health conditions and I wasn't sure of how his future would turn out. I did start praying then more than ever before. Most of you know Kayden's health conditions but if you are reading for the first time he was born with a bilateral cleft lip and palate, dilated cardiomyopathy and what then they though was ebstein's anomaly (later said to be a displaced tricuspid valve with severe regurgitation). Anyways as months went by Kayden had surgeries, we had many doctors appointments seems like every day we had one. Kayden ended up growing like a normal boy, besides taking 2 meds for the first year of his life for his heart condition, after that first year he only took 1. His heart function was almost normal by the time he was 2 years old. So we just lived our lives. I had Tavion in May 2009 who was completely healthy as could be and had more spunk in him than any child I'd ever seen! Life couldn't have been more perfect for our family.

But then in June 2010, Kayden had to have another surgery he was 2 1/2 years old and this was his 5th surgery. This was suppose to be a simple one to remove a cyst that had formed beside his ear. It was the first outpatient surgery he ever had. So I was nervous about it anyways. The morning of his surgery his ear was draining, but the ENT said oh no he is fine to go on with surgery, he didn't consult the cardiologist. I don't know what I was thinking, all I know now is I keep screaming to myself WHY DIDN'T YOU JUST SAY NO NOT UNTIL YOU CALL HIS CARDIOLOGIST!! But I guess with his heart function being almost normal at his last appointment that was back in September of 2009 I thought oh he'll be perfectly fine......So surgery went on. After that surgery my son came out a different child. A month later my faith was put to the test again, Kayden went in congestive heart failure. I tell you his journey with heart failure I think my eyes cried more tears than they had ever cried until the day I lost him. I didn't know what would happen after that. I prayed daily for my son to be okay, though I never gave the situation fully to God, I thought I could handle it on my own. Though now I realize it was not in my control, it never truly was. It was always in his control. I witnessed a miracle with Kayden, when he had his open heart surgery they had to stop his heart and put him on the bypass machine. All the months prior and all the hospital stays his cardiologist would tell us how sick my sons heart was and how if his heart were to ever stop it would be hard to resuscitate him. I had the doctors at UVa tell me that he would probably not make it through a valve repair or replacement. When I left Kayden in that room in Boston I wasn't sure if I'd see him alive again. My heart fell to the ground and I broke down in tears outside the room because I didn't want him to see me upset. But Kayden came through that surgery, his heart took right over after that repair and come off the bypass fine. His surgeon in Boston was the best surgeon he could have ever had. Boston's Children's Hospital is the #1 hospital for pediatric heart patients. The surgeon who did the surgery from what I've heard is the best of the best, he told us after surgery they were surprised they figured Kayden was going to give them more problems then he did. So when my son came out of that surgery that well, yes ma'am or sir I witnessed a miracle, I witnessed God heal my son that day. Though he was not cured and not out of the woods, he brought him through that surgery and recovered perfectly fine.

Unfortunately it didn't last and to make the long story short and get to my point, his surgery didn't take but for about a month and it just had gotten worse. My heart was broken, I didn't know what to do or where to turn. All I knew is that the best surgeon couldn't fix my son's heart then who would be able to. So we knew he needed a transplant. He was admitted to UVa June 14, 2011 to be evaluated and listed for his new heart, his gift of life. My faith was running low, I always said ALWAYS said, why would God put Kayden through all of this from the beginning just to take him away. Why would he? What kind of person would do that? So that kept going through my head the whole time he was sick and in the hospital when he had a hard time coming off the ventilator so they left him on it a few more days. Though I continued to pray, I asked God to make him better just help him. It was totally out of my control, I couldn't give him medicine or put a band-aid on it and make it all better anymore. All I could do is hold his hand and talk to him, whisper in his ear and kiss his little head. Tell him everything was going to be alright. That is all I kept telling him, bubby everything is going to be alright, you just keep on fighting you hang in there. And he would just shake his head and if he was sleeping I'd still tell him the same thing, hang in there bubby it'll be okay, I love you. The night I got that call that we were losing him, I had never in my life fell to the floor in prayer but that night while rushing around the house trying to get thoughts together get in touch with someone to come pick me and the kids up to get me to the hospital because I was advised by my mom not to drive. I fell to the floor on my knees and begin to pray to God out loud to not take him from me, keep him here I needed him, I was talking to Kayden too and told him you hang in there baby I'm coming. Just keep your little heart beating. When I got the call back that Kayden was gone, I couldn't help but ask God WHY WHY DID YOU TAKE MY SON, WHY WHY WHY?!
...............................................Fast Forward to today..................................

Today June 8, 2014, it has been almost 3 years since I lost my son and I have been regularly going to church now since I think September of 2013. So many times I can not tell you how many or how many people have told me, Misty I admire you for going to church for all you have been through. If I lost my child they would have had to put me down I wouldn't have been able to go on.

You know I can't really put into words how I feel daily, yes I do agree I have been through a lot just in the last 4 years. I did try going to church after I lost Kayden, and honestly I couldn't I cried EVERY time I went into the church no matter what the message was, I cried. I cried because I still blamed God for taking Kayden, I blamed him for putting me through this I blamed him, he was in charge HE was the one who was suppose to keep my son here. HE made Kayden how he was and put him through all those surgeries 6 total in 3 1/2 years. So yes I did blame God for taking him and putting him through all of that and I was ANGRY I was very angry. But as time went on I kept thinking different things and looking at it different. I asked God to make Kayden better, and Kayden is better now he is in Heaven, he has a new heart in Heaven. It takes my breath away sometimes and brings tears to my eyes when I think about how his face looked when he woke up in Heaven and saw Jesus for the first time. Children that age, they go to Heaven, they don't know the difference between right and wrong, they still have that innocence in their selves. When I look at all the things God has allowed me and our family to do to honor Kayden and help other families dealing with hospital stays out, I feel Kayden with us. From the first toy donation we ever did for his birthday back in 2011 until last years in 2013. Each year it gets bigger and bigger, and I tell you God has big plans for our mission. I have been called and I believe in my heart to help these families out, I feel there is more he wants me to do and I'm not sure what it is, but I am hoping soon I will realize what that is. I have dreamed of also telling Kayden's story in real life giving people a sense of hope after loss. Life as a grieving mother is hard. Losing you're child, there is no worse. You don't get over that loss, it's one that will stick with you until the day they lay you in the ground. But you don't have to life in the grief, you can be happy also and smile. You can still walk with your child, maybe not physically but I carry Kayden in my heart every single day of my life and that will never change. The loss of my son really hit me harder than anything ever has and it made me a new person. I don't know who I was before I lost him, but now I am a better person and I have turned to God to help me get through those trying days when I feel like I don't have the strength to get out of bed. Because I know with him ALL things are possible. I do believe in my heart I will one walk in the Kingdom of Heaven with my God, with my grandparents, with my mom, and especially with my son.

So on your most difficult days, I want to challenge you to stop what you're doing clear your head and pray about your situation, but after you pray about it I want you to make a change, a change that will help better that situation for you. Because he hears us but still sometimes we have to do things for our selves to make things better.