From Mother to Mother…

First and foremost I want to thank everyone for all the wonderful messages and comments that you have sent. The outpouring of love, support and best wishes has been overwhelming. I will address some of your questions later in my posts but for now I would like to share an experience that we recently had.

When I told my cousin about Spencer’s coronal synostosis she immediately told me that she knew someone whose daughter just had the same exact surgery and told me she would put us in touch. So the very next day I was given a phone number to someone named Deborah. At first I was really apprehensive about calling her as calling strangers is not something that I am comfortable with. But I quickly realized that I had to put aside my fears and pick up the phone.  It would probably be worth a phone call. Needless to say it ABSOLUTELY was. I could not believe how welcoming, supportive and forthcoming Deborah was. Our conversation flowed as if we have been friends for years. It turns out that her daughter, Chloe, has a different but similar condition. Her daughter had what they call Sagittal Suture Craniosynostosis (this is the condition where the suture running from front to back of the skull is fused) the surgery is not exactly the same however it is very very similar. Her daughter was only five months old when she underwent surgery. Deborah talked freely about the whole ordeal. She shared her fears, she shared information about the actual surgery and allowed me to go on and on with my questions, one after the other. It turns out that not only do both our children have similar conditions it turns out that Spencer will have the same surgeon as well, Dr. Phillips of Sick Kids Hospital. Deborah also shared many things that I wouldn’t have even thought about, like telling us that we should have clothes that don’t go over Spencer’s head for the first little while after surgery as it can be uncomfortable.  She told us that his sleeping habits (even though they may be great right now) will most likely change and that Chloe did not sleep well for about a month following surgery. She told us that I could rent a breast pump from Sick Kids and store the milk there for him. She told us that every single room has its own private bathroom, and bed for a parent to stay. The best thing Deborah did for me was send me a slide show of pictures she had taken of Chloe’s recovery.  I had some very scary pictures in my head of what Spencer might look like post surgery however looking at Chloe’s pictures was not so scary. She actually looked quite peaceful. Yes, she was very very swollen, and under heavy sedation but it wasn’t really quite as scary as I was thinking. I think she is a brave mother for taking and sharing these pictures and I hope I will have the strength to do the same.