Wednesday, May 28, 2014

Sharing Sterling to save babies....

     I am always hopeful that by sharing our story, sharing Sterling's story, people will fall in love with him and be outraged that more research and more funding for that research isn't available. Sterling died from the #1 defect in the world! And yet most people don't know very much about it. Heck, I had two little boys with CHD's and I didn't know half of what I know now.

     My other two sons have issues with their electrical in their hearts. While this can be dangerous, theirs were caught and have been monitored closely. One even took medication for his entire first year of life to help him stay "healthy". I watched them grow and was assured their issues would not interfere with them growing up or their quality of life. I was actually given the impression that I shouldn't worry. That murmurs and certain issues weren't a big deal.

     That is why, when Sterling was born and was given a clean bill of health, I let my guard down. He had signs, subtle signs that something may be wrong. But those signs could also be seen as other more "normal" baby issues. He grew. He played. He laughed and loved. I didn't know that a baby could have defects in his heart and they could go undetected. I thought he would look sick. I thought he would give us clear signs that something was wrong. I was wrong, so very wrong.

     So when Sterling stopped breathing that day. When I was asked over and over again by police and medical staff, "what happened today? Would anyone want to hurt him?" I was left thinking it was my fault. Clearly, the doctors didn't know why my son stopped breathing so it had to be my fault! While we waited nearly eight months on his autopsy results, I blamed myself. What else could it be? Clearly, I missed something. When that call came and I heard the words "your son had multiple congenital heart defects that we believe stopped his heart that day which resulted in lack of oxygen to his brain which led to his brain death", I let out a moaning, deep cry much like I heard come from me when the doctor called his time of death.

     How in the world could such a chubby, happy and seemingly healthy baby boy be so sick? Research would lead me to story after story just like ours. And I started realizing just how deceptive CHD's are. How "good" our babies look. That leads to people not realizing just how deadly they can be. That also leads to people not wanting to know. I too wish I could go back to before I knew. But I cannot. And so I will continue to share. To hope that people will read the things I write and maybe become outraged that more isn't being done. More funding for research. Better testing.

     I write, I share our story so that no other parent has to hear from the coroner about their child's congenital heart defects. I always tell people that I don't know if we had known of Sterling's defects if he would still be here. But our family and Sterling, we deserved to know that we had a monster lurking. A monster waiting to take a piece of our family forever. We deserved to know so we could have fought. So I will share our story and keep sharing our story. And if anyone out there wants to share our story or use our story, please let me know. I feel like this is all I have left to do for Sterling, that this is his legacy. Education. Research. Better testing.

    

Sunday, May 11, 2014

Mother's Day......


     Another day that is a huge reminder that a piece of my soul is not here the way I want him to be. I have four little boys who are growing up with a mom who is forever different. I fell asleep last night thinking about Sterling. Thinking about who he might be today. Praying for a visit in my dreams. I miss him every single day, but holidays? They can cut like a knife.

     I have said it before, when I held Sterling in my arms as he took his final breath and that doctor called his time of death, my heart shattered. It felt like he physically reached in and took a piece of my heart with him, shattering what was left. As time goes on and I do the work necessary to heal, my heart slowly heals. Kind of like a scab at first. Still painful but I can function. When a holiday comes along (a birthday, Christmas, Halloween, his birthday, Mother's Day, etc.) the scab is ripped.

     Sometimes its slow and I don't even realize its happening. Other times its a bit harder, more painful. When that happens its all I can do to just get through the day. I notice I am on edge, the boys are on edge. There are more tantrums, more crying (from all of us). It then takes a few days or weeks for the scab to come back.

     I am on my third of everything since Sterling died. I don't remember the firsts very well. The seconds are still a bit hazy. This year I am realizing that while I thought I was doing "well" before, I was in shock and merely going through the motions. I still am coming out of the shock. Which I know some people will just not understand. To those of you who have lost a child, I think you will get exactly what I am saying.

     I am so very grateful for my five children still living on this Earth with me. Even when they drive me a little crazy. Even when I have to be firm. Even when I want to momentarily run screaming from my home and go sit somewhere alone, just for a moment. I am always aware how fragile life is and how quickly it can all change and be lost. I am aware more then most.

     Yet, I miss Sterling. A part of me is forever missing from my arms. I will never get to watch him grow up. I will never get a handmade card or dandelions he plucked from the yard because "they are just so beautiful mommy! Just like you!" So no matter what joy life has in store for me. No matter how grateful I am for the five souls who call me Mom. One little soul is missing.

     Its enough to make me not want to get out of bed. But I do. Every single day I get up and I care for and love on my children. I just miss Sterling while doing it. There is a sadness that I am getting used to. A missing and longing that is becoming just a part of me. I am learning how joy and sorrow can coexist. Its ok. They can do that.

     My life is so different then I ever dreamed it would be. And that is ok. Sterling has taught me so much in death about life. We don't all get the miracle of life. I don't understand it. But I don't have to. God does. And I have to just trust that Sterling lived and died exactly how he was always supposed to. And so am I. We are all living just as we were always meant to. And that is enough. I have lived three Mother's Days without my littlest love. Those days may not have been what they used to be. But that is ok.

     To all my friends who are mothers. Mothers to children who are here, to ones who are not. Whether you got to hold and know your child or are grieving a baby you never got to hold. I want you to know that I am thinking of you all. My hope is that we can all find some joy along with the pain.

     And to my sweetest Sterling, Mommy loves you and misses you, Always and Forever......May you always remember that I am your Mommy and I would never willingly give you up....I know you are safe in the arms of Jesus...I know you don't feel the pain that we do in missing you...I am so grateful for that...I promise that I will never take a moment for granted with your bubbas and your sissy...I promise to raise awareness in your honor...I promise that you will always be loved...Until we meet again sweet boy...what a wonderful day that will be....