I am wired tonight. I haven't been wired in 10 years, but I am wide-awake tonight. I just had a conversation with a stranger on the phone. Now before you go getting all judgemental, it wasn't someone I met in an illicit chat room on-line. (I talked to that person last night.) A mother called me from Minnesota; she is the Mom of a 3-month old baby girl with Pfeiffer syndrome. And she has a cloverleaf skull.
Pfeiffer syndrome is a very rare condition. It affects about one in 250,000 babies. And a cloverleaf skull - in which the skull is formed in 3 bumps instead of round due to premature fusing of the skull sutures - is the rarest type: odds are close to one in a million that you will have a baby with a cloverleaf skull. To say there are not many of us out there is an understatement.
This Mom had been sent some pictures of Ava as a baby by a friend on our on-line support group. She then contacted me, wanting to know all the things I wanted to know about Ava when she was a baby. Would she be Ok? Would she be brain damaged? Would she survive the many surgeries she needed to endure? Would she be mentally disabled? Would we ever feel normal again?
It was funny to be on the other end of this conversation. It took me back to a time, almost 7 years ago, when my little girl fought for her life in the NICU at CT Children's Medical Center. In truth, I don't like to think about those days. They were scary and dark. Even 7 years ago, there wasn't alot of info.on cloverleaf skulls, and what was out there was just frightening. I recall one day in the NICU, Malcolm came in holding an e mail from a woman whose daughter had a cloverleaf skull, or at least had been born with one. She had had many surgeries, but was a happy little 7-year old, doing most of the things she should be doing. Her mother wrote me often during the early days...encouraging me and giving me true and honest information. I still have her emails printed and tucked away. They are very special to me and always will be. This woman, whether she knew it or not, was my lifeline. She was my hope. I still keep in touch with her and her daughter is almost 14 now.
This Mom asked me a lot of questions and we "talked shop": surgeries, craniofacial docs, brains, doc appts., home nursing, trachs, G-tubes, shunts, child development...you name it. We didn't know each other, but we knew each other very well. She was in a place where I was...she felt the things I felt and saw the things I saw. She was so happy when she saw Ava's pictures because she said she could see a future for her daughter.
Imagine that. A few pictures, a 90-minute conversation and we were friends. She said so many of the things I used to think. She said exactly what I used to think. I didn't feel the need to let her in on my neurotic way of worrying about everything and anything on earth that could be worried about when it came to Ava; she will learn soon enough.
However, I did assure her that it would get easier and better and that she would come to accept a new sense of normal. i don't think about what I do each day for Ava...I just do it. It wasn't always that way, but after nearly 7 years it is. The constant worry and the stress never go away, but I've learned to battle them (with the help of wine and Xanax). This woman said it was refreshing to talk with someone who understood her, and I couldn't have been happier to be that person.
