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, November 22, 2014

The heart of a grieving mother

As Thanksgiving is approaching, Kayden's birthday, Christmas and a new year I feel I need to write this...

Society keeps quiet about child loss, like it's a disease and if you speak about it then you'll catch the disease. Well I'll shut them down quick and say it's not a disease, my son lived, and my son passed on, I speak his name daily, and sometimes I want others to talk about him too.

Since I lost my little love bug, life has been a struggle. It's a daily walk as a grieving mother...I never understood the importance of life, I took things for granted and didn't have a care in the world. I had my perfect kids and perfect life. And then in 2010, my world came crashing down around me, I heard the words congestive heart failure from a doctor talking about my 2 1/2 year old son. I was scared to death, and for the next year I was in the fight for his and my life. Though then I didn't know I would only have a year left with him. Any little thing got him put in the hospital, ear infections, simple colds, or just his heart failure. In June 2011 Kayden was put in the hospital, evaluated and listed for his heart transplant and then in the early morning hours of July 14, 2011 my life, and my world was shattered. Kayden James Barnes went to Heaven that morning while waiting on a heart transplant, Kayden was 3 years 6 months and 23 days old.

Since that day my life became different. I felt different, I talked different, I loved different, I was like a completely different person. At first I was angry God took my son, I was mad at the world that my son was gone and everyone else had theirs, I couldn't even look at a 3 year old without being sad. People always said everything happens for a reason and I have always been a strong believer in that. But at that time in my life, I asked myself HOW could there be a reason for taking my sons life? Where is the reasoning behind that? I couldn't find the answers, I shut down away from everyone. I couldn't talk to people without tears in my eyes. People say the first year is the hardest, well I tell you what every year since he's been gone it's been hard and honestly every day since has gotten harder for me because it's been longer and longer since I've seen him, held him, or heard his sweet voice.

Here I am 3 years 4 months and 8 days later since I lost my baby and I admit I'm in a better place in my grief. I still miss my baby every day, I still think each day is harder, I don't believe it'll ever be easier. Every holiday seems to get harder without him, though I'm happy for my other kids. I love different, I love with all of my heart now, when I give it away I expect you not to break it, handle it with care because it's a fragile heart. My heart has been beat, broken, and shattered. It's been pieced together and scarred over. I look at the world and life in a different perspective. I care more about others and their feelings. I appreciate simple things more and I'm in church and doing great, though that is a walk all on it's on. I'm angry much less, though some days I get angry and yell and scream, WHY ISN'T MY SON HERE?! I'm now on a mission to help other families who are affected by congenital heart defects and child loss. I am doing all I can to keep my son's memory alive and tell his story.

Kayden is no longer here on earth with us, but he lives on through me and his brothers and sister. He lives on through his pictures, stories, and the memories he left behind. My heart hurts so much for my son, though I've learned to cope and handle the emotions. They come in waves by the way. I'll be happy in the morning but be a screaming crying mess by night some days. This Thanksgiving will be our 4th without that sweet handsome little boy. Kayden would be 7 years old December 21, I wonder what he would look like now, how would he be with his sister and his brothers, how much would his personality have grown. He had one heck of a personality anyways. I also wonder if he would have gotten his new heart and been okay.

The heart of a grieving mother is a mystery. You have to handle it with care, because she has lost the most precious gift anyone could ever have, she has seen and heard things that no one ever wants to. The words no mother ever wants to hear, 'I'm sorry your child died'. No they didn't put it that way to me at least but that's pretty much how it sounded. I had one doctor say, he was doing great a couple days ago what happened?! I had another say he was a very sick little boy, I'm so sorry for your loss. That has to be one of the hardest jobs for a nurse or doctor to tell a mother and family that a child is gone. Kayden had a few favorite nurses so they gave him his last bath that morning before their shifts ended. The nurses and doctors who came in our life with forever hold a place in my heart and I'll forever be grateful.

At the end of the day when the world is quiet and no one is moving in my house, I sit and think how much life would be different had Kayden lived. I cry, I miss him, I close my eyes and just go back to those days I held him, the days I watched him sleep, the days he played before he got really sick. I fear I'll forget what he sounded like so I'll sit and I'll think back to his voice and his cute little phrases and some days when my memory fades, I'll watch his videos just to hear him and see him, because I know at that moment in time, my sons heart was beating, he was here and was alive.

All I want is the world to know CHILD LOSS HAPPENS. It's not a disease, you can't catch it by listening. Say our child's name, don't tell us at least you have other kids. That is one of the worst to ever say and you'll get your head bit off, my other kids do NOT fill the loss, they do NOT heal the wounds from the battle I faced and am facing forever. They are their own people and are not Kayden. No one will ever take Kayden's place. Just listen to a grieving mother and you'll get a look into her heart....

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