Tuesday, July 25, 2017


Two nights ago, I dreamt that Claire spoke her very first word ever. It was not my usual type of dream because I didn't dream she was radically different or more advanced. I dreamt she was exactly as she is in "real life." During the dream, Claire was mad and arching as she sometimes does when she is laying on her tummy in her beanbag and her g-tube is tilted in the stoma or rubbing on her belly in an uncomfortable way. She will almost do what looks like a push-up in her beanbag, arching her upper body wayyyyy off the beanbag to alleviate the pressure on this sensitive area. 

In the dream, she was doing this very thing. And as I always do in reality, I walked over to her in the dream and said, "Here, baby! Let me help flip you over. Does that feel better?" to which she replied with a smile, "Better!" (It actually sounded a little bit like she said "butter!") My eyes widened, and I said, "What did you say?" She grinned and again said, "Better!" I kept asking her to say it again, and every time she would repeat "better," grinning with pride. I tested her to see if she could say any other words, and my sweet girl just wanted to say "better!"

After she had said this word maybe 20-25 times in my dream, in complete disbelief, I grabbed my phone to video it, and she immediately clammed up and gave me her best RBF, just as she does almost every time I try to take her picture now, in true diva fashion. Don't get it twisted, I totally dig her 'tude, but it is becoming increasingly difficult to get a real nice pic of my girl these days. And if you know me, I like my pictures, so she & I have been butting heads about this very thing lately!   

I was left feeling confused when I woke up, always trying to seek meaning from the things that life throws my way. And I also felt a little bit wistful for the things she is still unable to do. I love her for the way she CAN communicate with the world and for the progress she HAS made in her therapies and so forth. Do I wish she could do more? Absofuckinglutely. But do I value who she is and love where she's at currently? Damn skippy. These highs & lows, you guys... these far extremes... the many polarities in my thoughts and feelings... they're very real, and they hit me hard sometimes, these last few months especially. 

Today Claire turns 16 years old. Sweet 16... holy shit. How is that even possible?! I look at her with such admiration and awe at all she has fought through to stay. My child who wasn't supposed to live to age 1 is SIXTEEN today. I bow to my knees and pray to every God/angel/protector/magician in the whole Universe for wrapping their arms around my precious girl and giving us the gift of time. 

The more I think about my dream, the more I wonder if maybe Claire just needed me to see things from a "better" angle. Perhaps she wanted me to remember the most important thing in life -- that I am in control of my own happiness, and life can be "better" if I so choose. I'm not gonna lie, it has all felt pretty heavy lately... pretty sad... pretty out of my hands. Not just Lola's rash, but nearly every other area of my life as well. 

Leave it up to my best little teachers to help me see things from a different vantage point. That's generally how it works. They give me such perspective and always bring me back to a place of love. 

I wish you the happiest of birthdays, my sweet Mimi. You shook my soul to its core 16 years ago, you showed me what love really is, and you simply made.  me.  BETTER.  I love you with all of my heart, soul and being, my perfect girl. 

Kerby, Cal, Claire, Christina, Lola & Elisabeth

If anyone ever spots these ostrich socks in grown-up ladies sizing,
I'll give you a million bucks if you buy them for me.
Just kidding.  Sort of.  Tee heeeeeeee!  I NEED THESE!

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