A Better World: Rare Disorder Changes the Lives of this Family - WFSB 3 Connecticut
Monday, February 11, 2013
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Our journey without a map... Faith is not being sure where you are going, but going anyway. Seven kids.... Three with Prader-Willi Syndrome.. Life here is ALWAYS an Adventure!!!
"God didn't promise days without pain, laughter without sorrow,sun without rain, but He did promise strength for the day, comfort for the tears, and light for the way." -unknown
Our Journey With Prader-Willi Syndrome
Our journey with Prader-Willi Syndrome started on December 1, 1994 when our son David was born.
David is our 4th child. We had no idea that our world was about to change forever, that nothing would ever be the same... or what that would even mean...
"Your baby has Prader-Willi Syndrome"
The words seemed to float around the room, like they weren't really meant for me to hear. This couldn't be possible because we already had 3 healthy boys. I had prooved 3 times over that I could make healthy babies! That's what it was... a mistake... they had made a terrible mistake... they were talking about somebody elses baby, not mine. I didn't hear what they were saying... these words weren't meant for me. I looked at my husband who was holding David and he had tears rolling down his face, but he was in control, he asked the questions, he was crying... I'd never seen him cry, not like this anyway. I was just sitting there like a silent observer to this scene. I didn't belong here, this wasn't my life. We were taking our baby home today and they were wrong. I would proove it to them. We walk back to the NICU with David to pack his things from his 10 day stay. His nurse gave me a hug and I collapsed to my knees on the NICU floor sobbing... It hit me like a ton of bricks.. I am the mother of a baby with special needs. Some syndrome called Prader-Willi... not sure how we are going to do this, we pack our baby and head for home.
The firt couple of years were a blur. David was sickly and we were in and out of the hospital with illness and surgeries. There was endless physical and occupational therapy, it took forever to feed him.. he had an NG tube for almost a year and was on oxygen until he was 3. Jacob was born 13 months after David and we were busier than we ever thought we could be. We had 5 little boys and life was good. But we both had this feeling that something, or someone was missing. Then we are told of a baby who has PWS and was in need of a family and we both knew immediately that this is what we wanted to do. So in September of 1999, Ben joined our family at the age of 5 months. He stole our hearts and life was good. We were busy raising 6 boys, everyone thought we were either saints or just plain crazy for adopting a child with PWS when we already had a child with it. Life was good, Life was busy, we wouldn't change a thing.... but something or someone was missing.
In May of 2001 I was put in contact with a family who had a baby girl with PWS. They were making an adoption plan for her and long story short, Caroline Grace Elise came to live with us when she was 7 weeks old. We all fell completely head over heals in love with this baby girl! She was the missing piece to our family. Life is good, life is busy.. Our family is complete.
7 kids, 3 with Prader-Willi Syndrome, maybe we are Saints, maybe we are crazy, maybe we're a little of both! Either way, life is good, and we wouldn't change a thing.
David is our 4th child. We had no idea that our world was about to change forever, that nothing would ever be the same... or what that would even mean...
"Your baby has Prader-Willi Syndrome"
The words seemed to float around the room, like they weren't really meant for me to hear. This couldn't be possible because we already had 3 healthy boys. I had prooved 3 times over that I could make healthy babies! That's what it was... a mistake... they had made a terrible mistake... they were talking about somebody elses baby, not mine. I didn't hear what they were saying... these words weren't meant for me. I looked at my husband who was holding David and he had tears rolling down his face, but he was in control, he asked the questions, he was crying... I'd never seen him cry, not like this anyway. I was just sitting there like a silent observer to this scene. I didn't belong here, this wasn't my life. We were taking our baby home today and they were wrong. I would proove it to them. We walk back to the NICU with David to pack his things from his 10 day stay. His nurse gave me a hug and I collapsed to my knees on the NICU floor sobbing... It hit me like a ton of bricks.. I am the mother of a baby with special needs. Some syndrome called Prader-Willi... not sure how we are going to do this, we pack our baby and head for home.
The firt couple of years were a blur. David was sickly and we were in and out of the hospital with illness and surgeries. There was endless physical and occupational therapy, it took forever to feed him.. he had an NG tube for almost a year and was on oxygen until he was 3. Jacob was born 13 months after David and we were busier than we ever thought we could be. We had 5 little boys and life was good. But we both had this feeling that something, or someone was missing. Then we are told of a baby who has PWS and was in need of a family and we both knew immediately that this is what we wanted to do. So in September of 1999, Ben joined our family at the age of 5 months. He stole our hearts and life was good. We were busy raising 6 boys, everyone thought we were either saints or just plain crazy for adopting a child with PWS when we already had a child with it. Life was good, Life was busy, we wouldn't change a thing.... but something or someone was missing.
In May of 2001 I was put in contact with a family who had a baby girl with PWS. They were making an adoption plan for her and long story short, Caroline Grace Elise came to live with us when she was 7 weeks old. We all fell completely head over heals in love with this baby girl! She was the missing piece to our family. Life is good, life is busy.. Our family is complete.
7 kids, 3 with Prader-Willi Syndrome, maybe we are Saints, maybe we are crazy, maybe we're a little of both! Either way, life is good, and we wouldn't change a thing.
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