eSpecially Parents July Edition: Natalie's Story

When Mark and I first starting thinking about having another child, we were hoping to have a diagnoses for Sophia so we would know what to test for during the next pregnancy. Despite seeing many specialists and having her DNA tested in the Netherlands, we had no answers. At that point we realized we may never get any answers. Mark and I believe that it was a spontaneous genetic change that occurred at the very beginning stages of development. There is a one percent chance that it can happen to anyone. We decided not to wait for any answers.

The decision to have another child was very easy for us. We were scared but we knew we wanted more children. We had several high level ultrasounds and at 16 weeks pregnant we found out that Alex was a healthy baby boy. The picture was clear as day. The moment the 3D image of his face popped up on the screen a ton of fear was lifted. As time would go by, I would start to get scared again. My doctor let me get an ultrasound anytime I felt nervous or just needed reassurance that everything was ok.


Before Alex, caring for Sophia was all I knew, hard work doing therapy to build strength, doing small medical procedures, major surgeries, recovery and long feeding sessions were our normal. When I had Alex everything was a piece of cake. Alex is an amazing baby. He has been so easy to care for. Alex has always been a good sleeper, eater and transitions have been effortless. He is the exact kind of baby we needed in our lives. Mark and I feel so lucky to have Alex. He seems to balance everything in our lives perfectly.

Life has definitely changed since Alex was brought into our world. We feel so lucky to be able to experience a typical child. At times there are two sets of emotions for me. As I watch things come so easy for Alex I feel so much happiness but at the same time I feel sadness for Sophia. I wish she didn't have to work so hard and experience so much pain just to be able to do simple things. When I take Alex out and about I feel guilty that Sophia cannot always go with us since she is medically fragile. I feel great when strangers come up to me and tell me how adorable Alex is. I also feel angry at times, thinking if I had Sophia with me instead, that same person would just avoid us, stare or make a rude comment.

These thoughts and emotions have gotten better with time but I know they will always be there. It is only natural for me to want Sophia to have the same experiences Alex does. Majority of the time I feel happiness for both children. They are lucky to have each other.

Alex gives his sister daily kisses and will cry if he can't get to her. Alex is such a sweet and funny boy. He entertains Sophia and makes her laugh. Her talking, strength and mobility have increased since Alex has been moving around and talking. I think he motivates her to want to do it too.

Sophia has been great for Alex too. He doesn't look at Sophia in any other way than his big sister. He will grow up a sensitive and compassionate human being. He will not think twice about another person because of their differences. We think he is going to be one amazing person because of Sophia.

I feel so lucky to have two amazing babies. The experiences have been very different but the thing that remains the same is the happiness and joy they bring me.

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