Not Expecting This

Say whaaa???
(This was me on the phone yesterday with my 'Oh no you didn't' look.)
As most of you know, Anna has Gorlin Syndrome, and you can read more about that by clicking here. She's had close to 250 cancer spots removed from all over her little body; however, some of her other issues don't fit exactly with Gorlin. After some Googling extensive online medical research, we thought we had found the missing link! We mentioned it to our absolutely fabulous doctor, and she had already been working behind the scenes to have Anna's DNA tested for this exact syndrome. Brilliant! So we did the blood test and have been waiting for 4 weeks to hear back, really, just to confirm that she did indeed have this other syndrome tacked on to Gorlin (it's on the same gene, for pete's sake, so of course THIS is the missing piece!).

Welcome to Holland

Anna has been on my mind constantly these past few weeks. We think she may have another syndrome on top of her original diagnosis of Gorlin Syndrome, and we're waiting for her test results to come back. Any day now. (It's been 'any day now' for a week, which makes it frustrating.)

If she does have this new thing, I'll share more. (I've found that there's a fine line when you have a blog. How much should I share? Will my sharing help others? If the answer is yes, I try to share as much as possible with you.) 

I've wanted to write more about my journey with Anna, but it just hasn't been the right time. I've written posts in my head for weeks, and then days later I'm so glad that I waited. I was just about to go to bed a few minutes ago, when God told me to write. So, here I am. I don't have much to share right now, but Welcome to Holland is a good place to start. This poem is well-known in the special needs community, although it obviously is applicable to pretty much every life situation where our expectations differ from our realities.

c1987 by Emily Perl Kingsley. All rights reserved

Welcome to Holland

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

Usborne History Match-Up for ALL CC Cycles!

Encyclopedia... what images come to mind when you see that word?
For me, it's a dry, boring book with pages and pages of text of itty-bitty font.
Gag.

CC Day - Week 17

I updated my tutor tri-fold board the other night before our Week 17 CC day. My friend, Tammi, saw a board like this at her CC Support Manager training recently. When she told me about it, I knew I wanted to do it, too. What an awesome way to remind our students and their parents that God really is at the center of everything!

Anna Update

I haven't posted about my sweet baby girl in a while, so I thought I'd share a little Anna update.

If you've been reading the blog for a while, you know that Anna has Gorlin Syndrome, which is a rare genetic disease in which her cells don't know when to stop making more cells. She's had basal cell cancer spots removed and more are found each time we visit her dermatologist (11 last visit). No fun. Her condition has also affected her mental and physical development in different ways. And just this year we were told she has Sensory Processing Disorder; she seeks out sensations that she has trouble feeling on her own (and that's a whole 'nother post).