The Beginning

Nothing can ever prepare you for the journey of parenting a special needs child.  It is a journey of grief and celebration.  Sadness and joy.  Anxiety and peace.  Most importantly, it is a unending journey of love and learning that will take you to some amazing places. It also can take you to some dark places, but we ultimately have to choose whether we want to dwell in the darkness, or keep searching for the light.

Reece was the perfect text book baby. I had a great pregnancy and enjoyed being pregnant. Reece was born a healthy 8 lbs exactly.  He did have a short NICU stay for Meconium Aspiration, but came home after a week. He ate like a champ and slept like a champ. My sister had her first baby 6 months after Reece was born. He had horrible Colic. I knew how lucky I was to have a calm sweet baby. Now ask me about that calm sweet baby that is 14...better yet, don't :-) One word; Teenager.

After Reece, we weren't in a hurry to have another since we were pretty young as it was. 6 1/2 years later Mason came along.  My pregnancy with Mason was just as easy as it was with Reece. I enjoyed being pregnant and felt great. My OB was a bit concerned that the baby was measuring small, but regular Ultrasounds showed no significant issues. I even opted for all the prenatal genetic testing. All came back negative. Needless to say, I was a bit shocked when I went into labor at 34 1/2 weeks. I was scheduled the very next morning for a cesarean section.  I remember so vividly the exact moment Mason was pulled from my belly. There was no cry and the doctors and nurses were very quiet. I just waited and waited to hear that cry.  Nothing.  It felt as if hours had passed.  I'm not sure why I didn't speak up or ask if everything was OK.  I just waited.  My OB finally spoke.  He then told me these exact word; "Megan, they are taking your baby to the NICU. They are checking him for a syndrome." What? A Syndrome? I was so confused. I wasn't even really that worried at that point.  I'm not sure why.  Maybe it was because I had great prenatal care, felt great, and that all my testing came back fine.  A few hours later, my world came to a screeching halt.  I was told of all the anomalies they had identified in Mason's physical features.  That he had a "distinctive look" to him that children with syndromes possess. I felt frozen and numb. Since I just had surgery, I couldn't even go see my baby.  The baby that was only being described to me and referred to like some sort of Science project.  Later that night I was taken down to see Mason.  I didn't know what to think.  He was so tiny.  He was different.  He didn't look like other babies.  The geneticist told us that he would be severely delayed.  His hearing tests told us that he was profoundly deaf in both ears.  And finally, the diagnosis. Cornelia de Lange Syndrome (CdLS). "What the heck is that?" I thought.  No one really knew or what exactly it all entailed, but the Neonatologist remembered in his residency (thirty-some years ago) a child with this syndrome and sure enough, he was right.  Mason was born with Cornelia de Lange Syndrome.

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