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4.07.2016

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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4.15.2015

Always Learning....

I feel as if life has brought me to where I am at for a reason.  I like this place a lot.  No, I love this place.  Although I love this place, the journey up to this point has had many bumps.  I think these bumps teach us many lessons. Weak, strong, happy, sad, angry, indifferent....all of these emotions help to shape us into who we are.

If you don't know me, My name is Megan. I'm a soon to be 35-year old and mom to two boys. I'm also a new step-mom to three teenagers which can be very challenging at times. My husband and I married this past January, and I'm so grateful to have met such an accepting man to have in my life. When I showed my husband my blog, he quickly pointed out that I spelled the word "patients" incorrectly. It's actually a play on words. I'm a Registered Nurse and after taking a year off work, I am returning on a very part-time basis. I love my job as a Nurse. Caring for new infants and mother's is exciting and rewarding. Although it has its bad days, there is nothing like watching new life emerge into the world to grow and thrive. Every patient, big or small can teach me something that can be beneficial in both life and career. I have a few patients that I hold near and dear to my heart. A few that have left a lasting impression. There is this one little patient though. My most favorite little patient. This little patient teaches me so many different things every single day of my life. Most importantly, he has taught me the very important virtue of patience. He is my sweet little patient, my son, my hero... and he just happens to call me mom :-)

Welcome to my little world. My great big little world!


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