Isabella Grace-ious

Isabella Grace
The story of the girl who changes my life

Wednesday, March 16, 2011

The Chase

I feel like I'm back in college, researching for a paper. I can't seem to unglue myself from the Internet, endlessly searching for something definitive to grasp onto, something that will give me that moment of clarity, that Kabuki is, in fact, the truth of Isabella.

I am back to my old ways, obsessing over different symptoms, writing my list of possibilities on my little purple pad of paper, only to later cross them off after thorough investigation on medical websites. She fits here, she doesn't fit there. Why am I so determined to put her into a category?

I want to know. I want to find it, label it, grieve it, thank it, and stop worrying that it will take her away from me. I want to scream it out loud for anyone who looks at her funny or asks me why she does this and doesn't do that. I want to make it a word that falls out of my mouth in a way that isn't horrifying, just like saying Isabella has brown hair. Isabella has blue eyes. Isabella has a genetic syndrome.

It used to haunt me like this before. At first I felt like I was running away from it, denying that it could be, hating doctors that suggested it, and believing that she would one day be what I thought my dream of my child would be.

Not anymore. What I thought I wanted in Isabella when she was born isn't who Isabella is today. She's so much better. I want exactly who she is. I want her sweet voice, her big eyes, her gentle nature, her perseverance and her determination. I want her chubby fingers, her overlapping toes, her clumsy run, and her social nature. I want her careful steps, her affectionate hugs, her love of books, and her twirling dance moves. I want her brown hair. I want her blue eyes. And I want her genetic syndrome.

I just want to know what it is.

So, the chase is on. I feel like it has always been winning, evading me by making me fear it, then hiding itself behind illnesses that took first priority of our attention. It runs from me and uses insurance companies, busy doctors, and unreliable, nonspecific, and slow advancing genetic testing to remain always out of reach. It plays games with me, making me want it one minute and not care for it the next. It uses my patience, my anxiety, my time, my money, my sanity, my marriage and my child to turn me into a someone I barely recognize anymore. And despite all of this, I am so thankful for it.

I fear it sometimes, but I don't wish it away.

I have already accepted that it is here. I'm not running anymore. I forgive it for making us worry, and for making my baby struggle. I accept that it is in control of her body. I will live every day of my life teaching my daughter, family, friends, doctors, teachers and society how to adapt, adjust, embrace and accept it. I just want to put a name to it, so I can say that finally, the chase is over.

Since learning of Kabuki Syndrome 6 days ago, I feel like I am getting closer. Like the hunt is intensifying as it reaches the final moments before revealing itself to me. But the harder I push to find it, the more I wonder if I will ever, for sure, know the truth. And if not, will I ever, really, be able to accept that and move on peacefully?

I do know that this child of mine has a spirit made of pure light. I have often heard that people who are blind or deaf use their other senses to overcompensate for the loss of the other. Isabella's body isn't perfect. It is weak and fragile and different. But her spirit is amazing. It is strong, it is innocent, it is powerful, and it is loving. It overcompensates for all that her body is unable to do. That little body is just the host so that her spirit can light up her corner of the world while she is here.

I can't believe the amount of love and support I have been surrounded by in this past week. So many of my friends and family are calling, texting, writing and visiting, checking in on us and loving up our girl even more than normal. I appreciate all of you for helping me, and for loving Isabella so much.

I have also found SO MANY wonderful people through Kabuki forums, blogs, and facebook. I have never before felt so uplifted by so many hands, accepting me and guiding me through this process. I can't tell you how good it feels to see pictures of each of your beautiful children, whom all look so similar to my own little love, and to feel like I have finally found Isabella's community. You all, who live so far from me, some of whom I have yet to even speak with yet, already feel like a kind of family to me.

My heart says Kabuki.
My brain says Kabuki.
The Internet says Kabuki.
But I'm still not sure.

So the chase goes on.


  1. so it took me a while for the tears to clear enough to be able to write something... i could barely even finish the last few sentences because everything was blurry.

    i love this post. you are right, she is pure light.

  2. yes, what Jen said :) and this is a great post! your a strong mama!