In the medical world, you'll often hear doctors tell their patients to never use Google.
It's true, you shouldn't.
And I'm bad, because I did.
Upon hearing Jett's diagnosis over a year ago, I wanted to find out EVERYTHING about Pontocerebellar Hypoplasia. It wasn't a pretty picture and I remember crying every time I would look it up. The reports that I read were very straight-forward. Of course, there isn't a whole lot of information on PCH, but what I read would always state the following: List of symptoms (too many to list here), treatments (a bucket-load of medication), and the prognosis.
The prognosis.
This got me EVERY.SINGLE.TIME. In fact, I remember Cody walking in on me crying many times as I read the prognosis over and over. And guess what? It was only one sentence long.
"Most children with Pontocerebellar Hypoplasia live only into infancy or childhood."
How could the author of the reports just state this so simply and matter-of-factly? It was like a slap in the face every time I read it and I wanted more details. How was it going to happen? How do I know when his time is up? Why? Why? Why?
So I stopped.
I stopped Googling. I stopped researching medical records. I had too many questions and not enough answers. It was a relief to make this decision. I felt that I had dug myself into a deep, dark hole and that each time I read a medical report, I would dig myself deeper.
I began to appreciate the here and now. I began to look at Jett as an individual, not a "case" or a "patient". I realized that even within the PCH realm, each child is different. I also began to look up blogs that were informative, positive, and written by real human beings with real human hearts! No offense, doctors.
Anyway, one day in my searching, I came across this website called "This Little Miggy". The author is a mother of two girls, one of which, was born with limb differences. You can read all about her HERE. What I really liked about her blog was that each week she highlights a child with special needs. As I would read through each story, my love grew for these precious children. Each of their circumstances is so different, yet I felt a connection to them and their parents.
Last week, I had my chance to write about my sweet, little Jett man. As I wrote about our situation, I became overwhelmed with gratitude for the precious spirit that I have in my home. I need to fall back on this more often. There are times where I get too caught up in the bad moments. I get caught up with the medical side of things. I get frustrated and angry. It's not fun for anyone involved. My goal is to write out my thoughts more often. If I don't do this, I may end up making more crafts (refer to previous post)...and then become a hoarder...and then get kicked out of my house because of it.
Let's not go there. I promise to write out my thoughts more.
If you are interested in reading the post about Jett, go HERE.
OH! I almost forgot, we have new family pictures. Exciting, right? Getting family pictures, in itself, is a whole other story that I will have to write about sometime soon. For now, I'll show you the "ummmm...yeah, this picture turned okay I guess" picture.
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