Don't get me wrong, I loved *EVERY* step of Cal's childhood. But looking back, knowing what I know now, I wish I had savored each & every thing he learned so much more. And while I am in complete and total awe of our girls and all they are capable of doing (given their situations), it is just DIFFERENT. No question. Their development is quite limited. I got the "privilege" of reading their IEP's this year which reiterate to me on paper once again how INCREDIBLY far behind they truly are. Their goals are sometimes laughable. I often wish to add my own sarcastic, smart ass goals just for my own sanity benefit. (My first occupational therapy goal will be for them to learn to properly extend their middle fingers at appropriate times to assholes who ask, "What happened to her?" Grrrrr...)
Anyway... I know my girls rock. I know their very lives are miracles. I know they have FAR outlived their prognoses. I know they have accomplished more in their lives without ever having spoken a word or taken a step than most "normal" people do in a longer lifetime. But still... sometimes I have these moments where it hits me just how far behind they are, and I won't lie, it does hurt. And I DO cry sometimes. And I feel sorry/sad/frustrated for them, for Cal, for me/Scott, and even for our own parents (because they too don't get a "typical" relationship with their granddaughters). Then I get pissed at myself for having these "weak" moments where I'm not all positive & smiley & beaming & shitting rainbows & all that jazz.
So... you can imagine how AWESOME each accomplishment truly is with our girlies. And this particular one a biggie. Both of my girls have extremely limited use of their hands. They have had their thumbs tucked into their tight fists since they were babies, and that has not changed. I remember hearing that was a sign of an underdeveloped brain, and there are no words to describe just how much that crushed me. I prayed their fists would relax, their thumbs would come out, they would be able to grasp objects, possibly hold them for an extended period of time, and mostly just interact more with the world around them.
PART of that has happened! Claire's fists have opened over the past few years (though Thumbkin remains solidly inside still, dammit), and she is now able to use her hands to touch switches and start to make choices. It is just so precious seeing her able to tactile-y (is that a word?!) enjoy her surroundings with her sweet little hands. This is my new favorite thing she does...
In just the past week or two, Lola has started to open her fists & hang on to things! Observe my girl in action recently...
Gotta touch her Daddy's arm while she sleeps... xo |
She put her hands like this all on her own. |
Helping Daddy play Tiny Wings before bed (pretty sure her skill level at this MF game is higher than mine) |
In just the past week or two, Lola has started to open her fists & hang on to things! Observe my girl in action recently...
I could not be more proud. I love you girls.
“Do not spoil what you have by desiring what you have not; remember that what you now have was once among the things you only hoped for.” ~Epicurus
xo