Tag Archives: 5p- syndrome

Alone for the First Time

**To catch up on this Flashback Series, click the link at the top of the page**

Before She knew it, Monday morning came. He was student teaching and had to go back to work. She was going to be alone with Baby Girl for the first time since she was born 6 days earlier. She was still reeling from the diagnosis, let alone just learning how to be a Mom. But She could do it. He felt terrible that He had to leave; He didn’t want to go and leave his new baby or leave Her alone. But He had to.

The day before her father-in-law had stopped by with all the information he could find on the internet at the library. He was thrilled to be able to tell them that there was an 80-year-old woman in Australia with Cri du Chat. Apparently one could live longer than a year. Interesting. The doctor didn’t know everything apparently.

She was so unsure of what to do. She had this little girl with this syndrome and She knew Baby Girl would need extra help…but what should She do? The doctor hadn’t told her anything and this was completely uncharted territory and She surely did not know how to navigate it. Her Mom happened to have a friend whose son had Down Syndrome; Mom called her to see what she could find out. This angel of a woman told Mom to have Her call the local board of mental retardation first. They would be able to help Her navigate.

As soon as the clocked turned to 9 on that first alone morning, She called the board of mental retardation. She didn’t even know exactly what to say. When the woman on the other end answered, She just began to cry and tell Baby Girl’s story. The woman was so kind; she told Her she was brave and strong for calling so soon after Baby Girl’s diagnosis. They scheduled an appointment for Baby Girl to be evaluated in 4 weeks; until then, the woman encouraged Her to find support groups and to try to contact the national society for Baby Girl’s syndrome. With a plan, She felt slightly better. A little.

As the day went on, She fielded calls from well-wishers and extended family. She managed to get through them all; for some reason She couldn’t tell. She couldn’t get the words out to tell all of these people that there was something wrong with Baby Girl. They wouldn’t come out of Her mouth. So She faked Her way through the phone calls and pretended as if everything was ok.

Later in the day when Baby Girl finally slept, She decided to brave the internet. It was 2001 so the internet was still fairly new, but there was still quite a bit of information out there. She searched for Cri du Chat. The first website that came up was written by a woman who had given her baby up for adoption after finding out the baby had the syndrome. The woman felt guilty but was sure that this was the right decision because she couldn’t possibly raise a baby with such severe needs. That was not was this woman signed up for in life.

The second website she clicked on was about a little boy with the syndrome. He wore a helmet; he couldn’t do much; his Mom went on and on about all of the things he couldn’t do; she also included many details about his inability to eat and how he would bang his head against the wall all day long.

She lost it. She started sobbing uncontrollably. She dialed Mom.

“I can’t do it. I can’t be Baby Girl’s Mom. I can’t. I’m not strong enough. I can’t, I can’t, I can’t…” She said.

“I’ll be right there,” Mom said.

Mom came right over after taking the afternoon off from work; Mom held Her while She cried and helped with Baby Girl and tried to assure Her that She could indeed be Baby Girl’s mom. She could do it. She had to.

That day, She decided that if there was ever a time when She felt better and stronger, She would make a website of some kind. She had no idea how anyone made a website but someday She would figure it out. At that moment She knew that someone had to put some positive information out there. This journey couldn’t possibly be all negative. There was, after all, a Baby Girl here on this Earth who was beautiful and who was loved. That was positive and that would be what She would write about someday.