Wednesday, February 1, 2017

Tweening aint easy

Cicily is really showing her age lately.  The tween stage of life.  Here's an awesome story to demonstrate:
Cicily's school was having a pajama day with a cute story time event back at the school in the evening.  Cicily was a little skeptical of wearing pajamas to school, but agreed to it.  She enjoyed going to school and wearing her pjs like so many other 4th graders and kids at her school.  So when it came time to go to the story time in the evening, I asked her if she'd like to take a Minnie Mouse stuffed animal and she gave me a skeptical no look.  Sophie (1st grade) assured Cicily that EVERYONE was bringing a stuffed animal to the story time so Cicily finally caved and wanted to bring a Minnie along.  She's happily holding her Minnie on her lap as we wheel in to her classroom.  Her teacher starts reading her story to all the kids and parents gathered and Cicily starts looking around the room.  Then Cicily stealthily and very carefully (she's not very capable of being careful, so this was unusual) moves her Minnie from her lap onto mine with her face forward looking all cool like nothings happening.  She saw nobody else her age had a stuffed animal and quietly got rid of hers!  It was hilarious!!

Also Cicily's getting more and more into the "big" rides at Disneyland.  She tried out and loved Space Mountain this time!

 Cicily inspires her big sister Maya to brave one of the "big rides" Thunder Mtn. 

But in true tween fashion, she can't give up her excitement at the little kid rides either as she demonstrated by giddily pointing to them as we walked by.   
She doesn't look too happy here, but I promise just before the pic she was laughing with delight!!

Answers - LOVE edition

So as I shared back in November, we finally know what's responsible for making Cicily's body the way it is.  The gene POLR1C (or PolarIce as I think of it).  Cicily inherited a recessive version of POLR1C from both Chris and I.  The details of how Cicily ended up with POLR1C are a romantic story actually.  (Brief DNA 101: DNA codes for genes in our bodies.  All living things have DNA changes or "mutations" that usually go unnoticed.)  So Chris has a complete deletion of a line of code in his DNA that makes it so he passes on POLR1C as a recessive gene that has the potential to create Cicily's body.  Janalyn has a change in her DNA that turned a C in to a G which makes it so she passes on POLR1C as a recessive gene that has the potential to create Cicily's body.  Having DNA changes is common, but having DNA changes that code for the exact SAME gene is ridiculously uncommon.  As a geneticist put it before we had our youngest Sophie, it would be mathematically impossible that Cicily's condition is genetic and would happen again.  It's virtually mathematically impossible that two people would find each other and unknowingly have the potential to pass on the same recessive gene that can create Cicily's body!  See, romantic in a weird way isn't it?!  Chris and I now consider ourselves DNA crossed lovers.  We were discussing our awesome/awful situation one night and Chris commented that we needed a DNA BFF necklace where each of us has a half piece of DNA that matches up just right.  So I searched for something like that and found this necklace - C and J charms representing us and a strand of DNA representing our girls, one who inherited the recessive genes, and two who inherited the dominant gene.   
So if you see me around proudly wearing this necklace, you'll know it's a really good, brave day for me. And on that day I feel like I have 3 miracle girls.  The first is a miracle because she was born with a perfect body.  And as I realized in biology class, anyone who is born with a perfect body is a complete miracle given everything that can happen.  The second is a miracle because she inherited recessive genes that enabled her to have her perfectly broken body.  As Chris and I believe, Cicily could only impact people in the way she does with the body she has.  And only our DNA could have created that body.  The last is a miracle, because she was born!  And she may not have been conceived had we known about this science at work in our family.  
Our answers have made us aware of the miracles in our lives.  It may be an unusual love story, but it's ours.

5 year Wish Trip anniversary

Last month our family enjoyed looking back and reliving fond memories of Cicily's wish trip to Give Kids the World in Orlando, Florida back in 2012.   

This year we were very fortunate to celebrate the wish trip with a trip to Disneyland with our whole family.  

We are so thankful we've been able to watch all 3 of our girls grow up in these last 5 years. 

Cicily's wish trip and Give Kids the World has meant so much to our family.  If you want to read our feelings about it go here: or to relive Cicily's wish trip yourself, click on "Make A Wish" under site features on the left.  
To commemorate the 5 year anniversary of our trip together, we decided to donate to GKTW and get a paving stone that can stay at the Village.  We decided to put the words of Cicily's scripture on our paver: "Works of God made manifest"  (from John 9:3).  We thought this sentiment had dual meaning for the works that Cicily and GKTW both manifest.   

When Sophie is old enough to volunteer at GKTW, we hope to spend
 a family vacation back there donating our time and being "volunteer angels"
and visiting Cicily's star and our family's paving stone.  
Our forever thanks Make A Wish and Give Kids the World!