Sunday, February 16, 2014

Not Synonyms


It’s almost rare disease day.  Does that mean anything to you?

It doesn’t actually mean much to me.  I do not connect to the observance of this day.  I understand the point is to raise awareness of uncommon conditions.  And would venture that there is most likely a fundraising component to it and a detailed mission of some kind, though what I see shared on social media is centered only on awareness of rare diseases.   

My daughter has a condition called Rubinstein-Taybi Syndrome, and while it is rare, for her it does not manifest as a disease.  For us, her family, teachers, friends, neighbors -we do not treat it like one, we could not. One would never look at her and see illness.  And while I can see that wider understanding in the medical world should help with diagnostics and possibly treatment, unless you are a medical professional involved in her care, your awareness of RTS doesn’t really do much for Addie.    I’m just not sure how the average joe knowing the symptoms of RTS makes a place for my girl in the world, how it informs a friend, teacher, neighbor, roommate, coworker , boss…about who she is and what she has to offer.  There are a lot of words I’d like to come to your mind when you encounter my daughter – smart, limitless, witty, resilient, confident, generous, hilarious… disease isn’t 10th on the list or 300th or even on the list at all.  
 
Disease and disability are not synonyms.  They do not refer to the same things. One can have both, one can have either or one can have neither.   Rubinstein-Taybi syndrome is a disability, not a rare disease.  An RTS awareness campaign is of questionable value for my daughter.

Parents have asked what resources to give their young child’s teachers to inform them about RTS.  This is a natural question, but one I can only respond to with more questions to consider.  Why is it important for a teacher to know the possible manifestations of one part of who the child is before knowing the child himself?  Does an understanding of what could be involved in RTS help or hinder a teacher getting to know that student for who he is as an individual learner? Will knowing what RTS may look like in a range of children help his teacher teach better, will it help raise expectations and assist in envisioning his future as a contributing citizen of many communities throughout his lifetime?  Will it guide the teacher and administrators in setting a tone of academic expectations, dignity, friendship, and daily leaps of faith within the school culture?  Or might it unintentionally limit or even thwart some of these things altogether if it comes before that teacher internally chooses faith in his potential and in his place in her classroom?

We work very hard on ensuring people see our daughter clearly for who she is as an individual without limits.  She is indeed rare – her always-amused demeanor is uncommon, her way of showing her joy and appreciation is incredibly original, the 24/7 interest in science and experimentation is not something that seems typical of all 10 year olds, the way she declines to show incremental steps of progress towards a goal, but rather waits to unveil the entire new talent or skill when it’s complete is something you don’t see every day, her extreme love of dogs but complete lack of desire to actually pet them throws people for a loop almost daily, her memory  and attention to the details that matter to her are unparalleled, she has a one of a kind adoration of water in any form, any vessel, the fact that she has complex feelings and thoughts, but feels no outside pressure to elaborate on these is singular.  Yes, she’s rare.  And these are the things her family and teachers and friends need to know.   We spend nearly every waking moment ensuring others do not filter their view of her through a lens of patronizing pity or general “otherness.”

To see this flurry of activity on social media asking for the general public to consider RTS a disease contradicts some of this work.  It can turn dignity to pity, belonging to merely tolerance. So while I understand our circumstances are not an exact match to others’ and that people don’t make the same choices as we do, we do not remain silent when those choices may negatively impact our own rare children.

<<<<<<whisper>>>>>>>
Pssst. There is no sickness in my home.
No illness. No disease. Disability, yes.

Disease, no.
<<<<<<whisper>>>>>>>
 
(This t-shirt and many other awesome empowering designs is from The Nth Degree )

Saturday, October 12, 2013

We Are With You

He ran his 6th marathon, 5th one raising funds for the Special Friends Foundation. To cheer him through the end of his training and across the finish line, Rubinstein-Taybi Syndrome (RTS) families from all over the world participated in the surprise video of cheer for Addie's dad below.

This may be his last marathon.  We'll see - I'll believe it after a few registration deadlines pass, I think.  To end with a flourish, we will also be hosting a fundraiser party locally on Tuesday evening at a popular restaurant.  If you live in town or close and would like to come Tuesday night, drop a comment and we'll figure out how to get you the details.

Until then, enjoy these smiles and cheers from some of our RTS family around the globe.  And may you find in it the power to cross your own personal finish line:

Thursday, August 15, 2013

10, Her Way

My girl -

You are a wonder.  You defy expectations every minute of every day.  I have never met anyone so much her own person, not bothering with what others might conclude, just making your own way, in your own way.

Your beauty, strength, confidence, power, intelligence, compassion, humor, love and limitlessness will always be a wonder to those who love you and those who learn to love you.

Happy birthday, my sweet.
~Mom




Wonder by Natalie Merchant:

Doctors have come from distant cities
Just to see me
Stand over my bed
Disbelieving what they're seeing

They say I must be one of the wonders
Of god's own creation
And as far as they can see they can offer
No explanation

Newspapers ask intimate questions
Want confessions
They reach into my head
To steal the glory of my story

They say I must be one of the wonders
Of god's own creation
And as far as they can see they can offer
No explanation

O, I believe
Fate smiled and destiny
Laughed as she came to my cradle
Know this child will be able
Laughed as my body she lifted
Know this child will be gifted
With love, with patience and with faith
She'll make her way

People see me
I'm a challenge to your balance
I'm over your heads
How I confound you and astound you
To know I must be one of the wonders
Of god's own creation
And as far as you can see you can offer me
No explanation

O, I believe
Fate smiled and destiny
Laughed as she came to my cradle
Know this child will be able
Laughed as she came to my mother
Know this child will not suffer
Laughed as my body she lifted
Know this child will be gifted
With love, with patience and with faith
She'll make her way

Friday, August 2, 2013

Your Eyes

Child,

Fourteen years ago I first looked into your eyes. I could not yet name what I saw, I didn't know what you saw. Since that time, I catch the light and the heat daily. You see without judgment, you see with love, always looking for connection, for amusement, for what it good. You see the power in others first and you make certain they see it clearly themselves.

In your eyes I do see joy, love, hope, change, power, justice, promise, light, heat.

Happy birthday, sweet.

(Full screen view recommended)