Days of Darkness
On February 16th, 2012, my life was changed forever. Not only because I added a new son to my life, but because I added a new phrase to my vocabulary: Down's Syndrome.
Hunter arrived to this world with a few pretty severe issues. Hunter had PPH (Primary Pulmonary Hypertension). He was not breathing effectively, and because of this, it was determined that he needed to be admitted to the Neonatal Intensive Care Unit in Wausau.
Not only was Hunter not breathing effectively, he was also arching his back. While no one actually said it out loud to us, they were very concerned that aside from the probable Down's diagnosis, that he may have something wrong neurologically as well.
I remember being in a fog. They allowed me to see him, but I could only hold him for a short time, because he needed to be ready once the transport arrived to take him to Wausau. It was the last time I had the opportunity to hold him for over a week. When I held him, I didn't know what to think. My perfect little boy wasn't perfect. I felt like I was holding someone else's baby. There was no sense of attachment, no feeling of overwhelming love, no anything. The only things I felt were emptiness and fear. When the team of nurses, respiratory therapists and physicians came to transport Hunter, they stopped by my room with him in an incubator. He was intubated, had an IV, and several monitors hooked to him. Again, things were so surreal, that I didn't have any emotional response. I didn't cry as they wheeled him away.
Dr. McFadden came in later that morning after Hunter was transported. He asked how I was feeling, and said that if I wanted to leave to go to the NICU, he would be willing to discharge me. To be perfectly honest, I didn't want to leave. Leaving was terrifying, because it meant that I would have to face Hunter and his issues head-on. But, I felt that a real mother would leave, so, I agreed to go. Six hours after delivering my baby boy, I was out of the hospital and on the road. What a road it has been.
In the 13 days that Hunter spent at the NICU, I was emotionally unavailable. I was consumed by anger, fear and guilt. Everything I spent months looking forward to never happened. This birth was going to be different. Skin-to-Skin contact immediately after birth. First time breast feeding. Spending six weeks at home learning how to handle two small children. None of this happened. Hunter was ripped away within seconds. His inability to suck efficiently kept me from breastfeeding. 13 days in the NICU took away two full weeks of my leave. I had to FORCE myself to pump for as long as I did. My milk supply couldn't keep up with his needs, and my heart broke. I had to FORCE myself to go up to the NICU every day. I didn't want to see him lying there full of tubes and struggling. I didn't want to see my "broken" baby. The only thing that kept me going back there was the fact that I was his mom, and I wanted to seem like a good mother. Even though I thought I was horrible.
For a full month, even after Hunter arrived home, I had no bond with him. He was just there. I had no desire to hold him, to feed him, to care for him. Looking at him was excruciating. The only thing I saw when I looked at Hunter was Down's Syndrome. My eyes would be instantly drawn to his slanted eyes, his floppy limbs, and his wide-gap toes. I went through the motions of a mother, but there was no heart behind it. I put on a show for friends and family. Those closest to me knew that I wasn't all there, but when they would try to talk, I refused. I cried every night, mourning the loss of the son I dreamed of. The little boy who would look just like his daddy, the handsome teenager who become a high-school basketball star, and drive a jacked-up pickup truck. I sobbed for the 6'5" man who would marry his college sweetheart and give me brown-eyed grandchildren.
Everyone would say, "Down's children are special, sweet and good-natured" or "He is a gift from God" and "God only gives special babies to special parents." Bullshit. People with Down's Syndrome looked funny. They talked funny. They lived with their parents forever and were shunned by society. I wanted no part of any of this. Every fiber of my being wanted to just run away and never look back. The doctors promised me he would be OK. The swore there was nothing wrong with him. THEY LIED TO ME!!
When Hunter was a month old, something magical happened. As I was moving his little legs doing strengthening exercises, he looked me straight in the eye, and smiled. Not a gassy grimace. A full, bright, eye-crinkling smile. My heart melted. He knew I was his mommy, and he loved me. He loved me for everything I was, and everything I wasn't. He loved me even though I didn't know how to love him. Hunter loved me and all my imperfections. Who was I to not love him for his??
In that instant, I decided to become the best mother, therapist, friend, advocate and champion for that little boy that I could possibly be. I made friends in the Down's community. I researched Down's Syndrome. I learned that he DID look like me and DID look like my husband, but I had been blinded by my own self-pity. I learned that he can do anything anyone else can do. He can play sports. He can drive. He can go to college. He can get married someday. Hunter will have no limitations. The only limitation Hunter had was ME!!
Our life continues one day at a time. Some days I do have my pity parties. I see other people's babies that are perfect, and will not have the same struggles Hunter will have, and I'm jealous. I'm angry that I didn't get the experience I hoped for when he was born. I worry every day that I will fail him in some way. But these issues become less and less as the days progress. I'm learning how to cope, and though I am not perfect, I am trying. My heart has been fully invaded by this gorgeous little man, and I couldn't be happier that it has.
Love, Happiness and Pethair!!!
Shannon
Hunter arrived to this world with a few pretty severe issues. Hunter had PPH (Primary Pulmonary Hypertension). He was not breathing effectively, and because of this, it was determined that he needed to be admitted to the Neonatal Intensive Care Unit in Wausau.
Not only was Hunter not breathing effectively, he was also arching his back. While no one actually said it out loud to us, they were very concerned that aside from the probable Down's diagnosis, that he may have something wrong neurologically as well.
I remember being in a fog. They allowed me to see him, but I could only hold him for a short time, because he needed to be ready once the transport arrived to take him to Wausau. It was the last time I had the opportunity to hold him for over a week. When I held him, I didn't know what to think. My perfect little boy wasn't perfect. I felt like I was holding someone else's baby. There was no sense of attachment, no feeling of overwhelming love, no anything. The only things I felt were emptiness and fear. When the team of nurses, respiratory therapists and physicians came to transport Hunter, they stopped by my room with him in an incubator. He was intubated, had an IV, and several monitors hooked to him. Again, things were so surreal, that I didn't have any emotional response. I didn't cry as they wheeled him away.
Dr. McFadden came in later that morning after Hunter was transported. He asked how I was feeling, and said that if I wanted to leave to go to the NICU, he would be willing to discharge me. To be perfectly honest, I didn't want to leave. Leaving was terrifying, because it meant that I would have to face Hunter and his issues head-on. But, I felt that a real mother would leave, so, I agreed to go. Six hours after delivering my baby boy, I was out of the hospital and on the road. What a road it has been.
In the 13 days that Hunter spent at the NICU, I was emotionally unavailable. I was consumed by anger, fear and guilt. Everything I spent months looking forward to never happened. This birth was going to be different. Skin-to-Skin contact immediately after birth. First time breast feeding. Spending six weeks at home learning how to handle two small children. None of this happened. Hunter was ripped away within seconds. His inability to suck efficiently kept me from breastfeeding. 13 days in the NICU took away two full weeks of my leave. I had to FORCE myself to pump for as long as I did. My milk supply couldn't keep up with his needs, and my heart broke. I had to FORCE myself to go up to the NICU every day. I didn't want to see him lying there full of tubes and struggling. I didn't want to see my "broken" baby. The only thing that kept me going back there was the fact that I was his mom, and I wanted to seem like a good mother. Even though I thought I was horrible.
For a full month, even after Hunter arrived home, I had no bond with him. He was just there. I had no desire to hold him, to feed him, to care for him. Looking at him was excruciating. The only thing I saw when I looked at Hunter was Down's Syndrome. My eyes would be instantly drawn to his slanted eyes, his floppy limbs, and his wide-gap toes. I went through the motions of a mother, but there was no heart behind it. I put on a show for friends and family. Those closest to me knew that I wasn't all there, but when they would try to talk, I refused. I cried every night, mourning the loss of the son I dreamed of. The little boy who would look just like his daddy, the handsome teenager who become a high-school basketball star, and drive a jacked-up pickup truck. I sobbed for the 6'5" man who would marry his college sweetheart and give me brown-eyed grandchildren.
Everyone would say, "Down's children are special, sweet and good-natured" or "He is a gift from God" and "God only gives special babies to special parents." Bullshit. People with Down's Syndrome looked funny. They talked funny. They lived with their parents forever and were shunned by society. I wanted no part of any of this. Every fiber of my being wanted to just run away and never look back. The doctors promised me he would be OK. The swore there was nothing wrong with him. THEY LIED TO ME!!
When Hunter was a month old, something magical happened. As I was moving his little legs doing strengthening exercises, he looked me straight in the eye, and smiled. Not a gassy grimace. A full, bright, eye-crinkling smile. My heart melted. He knew I was his mommy, and he loved me. He loved me for everything I was, and everything I wasn't. He loved me even though I didn't know how to love him. Hunter loved me and all my imperfections. Who was I to not love him for his??
In that instant, I decided to become the best mother, therapist, friend, advocate and champion for that little boy that I could possibly be. I made friends in the Down's community. I researched Down's Syndrome. I learned that he DID look like me and DID look like my husband, but I had been blinded by my own self-pity. I learned that he can do anything anyone else can do. He can play sports. He can drive. He can go to college. He can get married someday. Hunter will have no limitations. The only limitation Hunter had was ME!!
Our life continues one day at a time. Some days I do have my pity parties. I see other people's babies that are perfect, and will not have the same struggles Hunter will have, and I'm jealous. I'm angry that I didn't get the experience I hoped for when he was born. I worry every day that I will fail him in some way. But these issues become less and less as the days progress. I'm learning how to cope, and though I am not perfect, I am trying. My heart has been fully invaded by this gorgeous little man, and I couldn't be happier that it has.
Love, Happiness and Pethair!!!
Shannon
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