One year ago Lily was one month old and it was time to take her in for a check up. It was a beautiful warm summer day and everything was perfect. I still remember thinking that morning how wonderful everything was. The older kids were out playing on the trampoline, Lily was sleeping in her swing, and I was folding laundry in the kitchen. It was exactly how I imagined having three kids would be. I also remember thinking that I was finally there. I was finally at that place that I had always envisioned for myself. A house full of kids, laundry folded on the dryer, and a blissfully happy family life. Things would soon unravel...
Later that afternoon I strapped Lily into her stroller and walked to our doctors office (I would later regret this). Everything was going as usual during the visit. Lily was gaining weight, the nurse said she was looking great, and all seemed normal. Then the doctor came in and asked lots of questions about how Lily was doing and if I noticed anything unusual. My response was of course no. Everything seemed on track except her breathing was a little labored at times.
I guess this is when the doctor saw his opportunity because he immediately started talking about a condition called "blah blah blah" (at the time I could not remember what he called it). He told me that this condition affected the vocal chords and that might be why her cry sounded the way it did. As he was saying this, I diligently took in this information thinking that she might need a surgery on her vocal chords when she got older? No big deal, she would probably out grow it anyway. Then he went on to say that this condition also caused severe physical and mental delays as well. Then I thought, "she doesn't have this". Things started to just go down hill from there. I can't remember what was said in our conversation, but I do remember that the doctor left the room and left me in a complete panic. As I held Lily and looked at her, suddenly she changed. Suddenly she seemed different, suddenly she looked different. When I looked at her face I didn't see my child anymore, I saw a baby that had something wrong. I wanted to flee, I wanted to get out of there, I wanted Mike to be there with me. I wanted to go back to the life I had earlier that morning, more then anything I wanted this to go away!
The appointment ended with the doctor telling me that we would have to take Lily to the children's hospital and get a blood test done. He also told me that we couldn't know if Lily had this condition without a test and there was nothing else we could do but wait. I practically ran out of that office and proceeded to walk home... sobbing (see why I regret walking). I walked into our house still in tears and Mike was immediately freaked out. As I struggled to tell him what happened, he began googling things like cat cry (because I could not remember what it was called). He soon found something on Cri du Chat and the news only got worse. We read things like "severe mental retardation" and "short life span". I felt like I was in a nightmare and I couldn't believe this was happening.
Mike and I made phone calls to our family, I cried some more, and then we tried to act as normal as possible. We didn't have any answers yet, maybe this was a mistake? Maybe her cry and her size could be contributed to something else? I still had hope, I could still believe that this would go away.
We ended up having to wait a few weeks to even get an appointment at the hospital and this waiting period was torture...