Excerpts from my Mommy Heart

Never underestimate the compassion of a child...

I have always said that Preston is incredibly sensitive and aware when it comes to Gracie. In the last five or six weeks, he has taken over the role of caregiver... or at least he tries! If Gracie cries, he does everything in his power to make her laugh. He will instantly go from busy little climber to be next to her... he becomes quiet, concerned and ever the entertainer. He will go through his repertoire of sure-fire "get Gracie happy" tricks until one works. It is the sweetest thing to watch.
When she coughs, he runs to her suction bag and grabs the large wash cloth we use to "mop her neck up" and puts it on her trach. SO cute... although I always have to tell him that, "Mommy will help Gracie." He has also taken to stretching the suction tubing and pointing the catheter at her. Again... not something I actually want him doing, but it is the sweetest gesture. When she coughs harder than he likes (if he feels she is distressed) he runs to me, all the while signing her name... as though I didn't hear what he did! He is already her protector and guardian.
Wherever she is in the house, he has one ear tuned only for her noises. He knows her various sounds without looking at her... her laughs, frustrations, cries (which to an unknowing ear can sometimes sound quite similar through her trach) and reacts appropriately. His greatest joys seem to be hearing her laugh (in which case he promptly laughs, too... even when he doesn't have a clue why she is laughing) and making her laugh. I LOVE how much he loves her. It makes my heart soar with pride, joy and pure love.

Bumps and Bruises...

Gracie has been far more active as of late... and it's been such a joy... and has brought some interesting challenges. She wants to "go, go, go" all the time - - which is such a change (and not always can we "go" - - try helping her understand that!). She wants to stand and try to walk so much more than ever before. And... she now tends to be more "in the line of Preston's fire." So when he throws a toy (because boys throw things... we are working on what to throw and where to throw it!) sometimes it bonks Gracie. This is a big "no no" and causes great distress... mostly for me! I worry constantly about her only sighted eye being injured - - so obviously, that's a huge concern. Gracie often laughs when something comes flying at her - - not exactly helpful in teaching Preston that he is "hurting" his sister, and obviously not the most appropriate response to pain (although I wonder if, despite the instant bruise or bump, it doesn't hurt her...?). But, what happens after the incident is too cute! Preston signs "sorry" the minute said object makes impact. Then he signs "hurt" and says "Ow ow ow" in the cutest little voice. He then makes his way to her and gives her big love... hugs and kisses. I have to get this on video... but really, I am too busy playing referee! His whole routine is super cute... however, I don't want him to know I think so! And, I need him to know that just because he does all that, doesn't mean that it's okay to use her for target practice! (He usually isn't bonking her with intent to injure... but does have intent to throw stuff at her (or anyone) when he is overtired.)

A Secret Language...

Gracie has about 90+ expressive signs. (Not including counting - - she counts to ten in sign, but doesn't understand the concept of counting. Also not including the alphabet - - she can sign the alphabet and knows most of the order of the letter signs... but not the concept of the alphabet.) She doesn't sign these signs all the time and on a good day is very connected and will even sign two and three-word utterances. These days are very sporadic.
Preston has nearly 70 expressive signs and about a dozen words (all words he says are words he also signs). His list grows daily when I say a word and he signs it, much to my disbelief. I am thoroughly shocked at his ability to pick-up ASL. The other day, I asked him if he wanted bread and he signed "bread." This is not because I worked on that particular word with him, but because he learned it from "Signing Time." (I'll briefly explain - - I diligently work on ASL with both kids and we also have the entire collection of DVDs. When I need to have Preston on "lock-down" to do Gracie's trach care or a bath and I am alone, I have to make sure that Preston is safe and entertained. So, he takes a seat in Gracie's Rifton desk, all locked in and secure. I give him a sippy cup, a book and put on "Signing Time." This allows me to get the things done for Gracie that are absolutely necessary without having to worry about my curious climber.)
Anyway... my dream is that one day (I am hoping sooner than later) they will communicate with sign. In the meantime, they seem to have this secret language - - gestures that often resemble some of the self-stim actions that Gracie has always done, but almost in a rhythmic pattern. It's like they are doing a dance... a secret dance. They do it in the car, in their seats in the kitchen... and if I make a big deal, they stop. I have yet to sneak the camera on them... and have a feeling they'll never let me. I just know they are communicating with each other... and I know that because I am the mommy, I will never obtain rights to their secret language decoder ring.