Why Post on Facebook and Have a Blog?

I thought awhile about whether or not to post information about Jesse’s craniosynostosis on Facebook or create a blog. I didn’t want people to think I’m feeling sorry for myself or wanting pity from them (It’s not about me anyway. It’s about Jesse). I didn’t want people to see me as one of “those” people who only post negative things about what’s going on in life. But I wanted a way to keep my friends and family (who mostly live in Missouri) updated on Jesse.

If he were my grandson or nephew, or whatever, I’d want to know what’s up. That’s one of my favorite things about Facebook. I get to see a little glimpse of the lives of my friends and family who are so far away.

What about privacy for Jesse? There are only 4 people on my friend’s list that I have not met in person. Every other one of my friends are old work colleagues, teammates from Team In Training, running buddies and friends, family, etc., etc. I know them now, or they were part of my life at some point or another. The 4 that I haven’t met in real life? They are women that I “met” on a support board for invitro fertilization over a year ago. We’ve supported each other through our IVF cycles and beyond and as far as I’m concerned, they are my friends.

But the blog is public? I never want to exploit Jesse and I truly hope that I am not. But awareness is so very important. Craniosynostosis is rare and many babies go undiagnosed. There is a window for the best time to operate for the best results and this is before the child turns one. And the older they get, the harder the operation is on them. And if they get too old, not much can be done. I don’t want that to happen to anyone.

Craniosynostosis is rare, but is easily diagnosed. People only have to know what to look for. What the characteristics are. I diagnosed Jesse and I have no medical degree or medical background. Craniosynostosis causes predictable shapes to the skull depending on which suture is closed. You can easily feel the ridge on Jesse’s forehead and tell that the suture is closed. Anyone can look for these characteristics, feel for the ridge and know when it’s time to go to a specialist. The issue is that most people have never heard of it. When I first found out about it, I was thinking, "crane-ee-o-syn-os-WHAT?". I had no clue that such a thing existed. If I had, Jesse most likely would have been diagnosed shortly after birth.

And if at any time I feel it’s necessary, I can password protect the blog or remove it completely.

Thank you to everyone for your thoughts and prayers. We are very grateful to have so much support.