Tourette's Syndrome

I’ve been given a new diagnosis. 

 

Actually, my daughter was given a diagnosis.

 

Being a mom, though, means that this diagnosis is actually my world now. This diagnosis will be researched, feared, reviled, loved, and ultimately owned by me.

 Because I’m a mom.  And my imperfect self loves in a perfect and unconditional ferocity this girl that I gave birth to eight years ago.

So I researched. 

I read about the statistics, famous individuals with the same diagnosis, and joined the support groups and newsletters.

I read about the natural remedies and holistic approaches. I bought essential oils, made terra cotta diffusers, found glass roller bottles, droppers, fractionated coconut oil, Epsom salts, magnesium supplements, and made potions with drops of ingredients I’d previously only associated with the Nativity.  I lovingly created these treatments, anointing my baby’s flawless skin with antique hopes and prayers, as mothers have done for thousands of years.

I feared.

I imagined the worst.  I envisioned the tears on her face, the peers who may be unkind, and the future broken hearts she may experience.  I imagined her being ostracized, ridiculed, and left out.  After reading about anxiety, depression, and emotional highs and lows, I feared a future that would hurt her and bring her to those places in her soul where even her Momma might not be able to shine a light and help her find her way out.

And I reviled.

I hated this diagnosis and how it seemed to be an attack on my strong and vibrant daughter.  I hated that tics will follow her emotions, twisting and contorting her features with every stressful thought or rush of adrenaline, making her want to hide her face from the world, her emotions naked before all in her presence.  I hated how there was nothing to fight, no enemy to drive away for relief. I hated how she has no choice and no control.  After telling her so many times that only she is the master of her body, in an effort to raise a little girl free from the notion that she needs to please others with beauty, physical touch, or by succumbing to societal pressures, it turns out that I was wrong. She doesn’t have full control of her body.

But then I loved.

I loved it because this is a part of her, and therefore I must love it.

 I loved it because I can see her being an instrument of awareness.  A beacon of information and acceptance.  An intelligent and lovely spokesperson.  A fighter. An advocate.  A strong voice in a world that sometimes needs strong voices to drown out ignorance.

She will shine. She will conquer. She will thrive.

She will do beautiful things with her life, and this diagnosis will only refine her, make her more compassionate, more intentional, and more tenacious.

And because I’m the Mom, I will own this diagnosis. I will have Tourette’s with her. I will walk with her and feel the pain, experience the sadness, and brush it off like a champion – by her side. I will grow in this diagnosis, educate, advocate, and be proud of this diagnosis. 

I will Love her.

Everything will change…..But Nothing will change.

The road stretches out before her and I can see that it’s full of adventure…

 

Perfect Parent

Before I was a mom, when I wanted to succeed at something, I always knew what to do. You do the research, or you put in the miles, or you buy all the latest equipment and put on your game face and Go For It. 

I wrote lists, posted goals, stayed up all night, read, memorized, struggled, and persevered –and it always led to the finish line, to the degree, the long term goal, or the job that I had in my sights.  Goal setting was something I did that would reliably get me where I wanted to go.

It turns out that being a parent doesn’t work this way. 

It turns out that you can take all the birth classes, eat the rainbow of foods and take the prenatal vitamins. You can breast feed, attachment parent, and use BPA free products.  You can research and love and provide like a champion.  

You can make sure you child is never hot, or cold, hungry, or exposed to too much sun or screen time.  You can teach them to read, to write, to think and create. You can have a mental check list of all the things a good parent does, and try your very hardest to cross off the list like it’s magically going to lead to parenting sainthood. 

But, as all veteran parents are sure to know, parenting doesn’t work like that.

As we weather the first of many future parenting storms, I look around and hope that it’s all “normal” and “ok” and that all my struggles with my children are not foreshadowing of scarier problems to come. 

Because it turns out that you can’t prepare for or prevent hardships that touch your childrens’ lives.  No amount of teachable moments or baby-wearing, green smoothies or fluoride or even the most Pinteresty of birthday parties can prevent your child from experiencing life just like we all did.  Life is hard.

And isn’t that a crappy lesson to learn?

In fact, I almost take it personally when my daughter has a “nervous” tic when she reads.  As I set up the eye appointment, I irrationally start to wonder, “Was it something I did? Did I do something wrong?  And if not, was it something I passed along to her through my own predisposition to worry / read too much / tense my muscles in my neck….” etc, etc, etc.  

The same goes for her decalcified molars from a genetic condition, her geographic tongue, and her tendency to have trouble falling asleep.  Is it all my fault? Was there any way to prevent it?  Probably not. But I’m a mom, so of course I have to ask myself.

I was horrified last night when my daughter very matter of factly informed me that she was ugly.  When I asked her about this, she tells me that it’s a fact, that she’s uglier than her friends. And then she starts to list a series of traits that make her ugly compared to these other girls, which makes my heart cry and the tiny voice in my head say mournfully that “it has begun.” 

Because as I look at my gorgeous daughter and see perfection and beauty and strength, I also see that she is now self-aware and doubting.  As much as we have protected her, it has begun. She wasn’t looking for pity, or even asking for help. She just told me she was ugly and when I begged to differ, while trying to work magic and also make her realize that looks don’t matter, she had a very grown-up, almost cynical tone of voice.  In an odd compliment of sorts, she said, “If you want to see gorgeous, look in the mirror,” her voice sounding hard and old. 

So, what do you do about this? 

And other than putting her in a bubble and spiriting her off to live in the woods like fairies….

How do I protect her from this?    Should I? 

The constant body love messages obviously didn’t to the trick. The effort to hide my own insecurities failed to sink in.  Attempts to send messages of skin deep beauty may have been heard, but not loud enough to drown out what she hears from society every day. 

It feels like a big failure – being the mom of a girl who can say such things about herself.  But I guess that’s what being a mom is going to be like.  It’s going to be heartbreaking. It’s going to be difficult, and when they are teenagers, I’m sure there are times it will be terrifying.  Ultimately, though, I wouldn’t trade it for anything.

 They are everything I had hoped and more than I had dreamed.

  I just hope the children I’ve been blessed with can forgive me for not being the perfect mother I had set out to be.

Revisiting myself

 

Recently, out of the clear blue, I thought to myself how very lucky I am.  While I’m creeping further from “young” and closer to “middle age,” and while I’m aware of the sticky hands of mundane and practical things, I am a traveler in time, ceaselessly visiting my most magical moments again and again.

And this must be why God gives women daughters.

Favorite books that occupied my elementary years are growing tattered in my daughter’s hands, while the characters, lovely friends of my youth, are making her acquaintance after slumbering for decades on book shelves and memories.  Like the Velveteen Rabbit, they are alive again, brought back from the brink by her love and attention. 

There are spunky fairies with pink hair and blue jeans, pioneers with their long dresses and aprons, faithful native friends who make bird calls outside our windows at night.  There are horses, and housekeepers, mysterious neighbors and friendly bears.  A wild family tree from my own youthful psyche.

My beloved stuffed cheetah, shelved after I came of age, is now pampered and cuddled and traveling once again, the companion of a child who treats her like an aged queen – her importance to me lending her a regal distinction in my daughter’s eyes.

As she skips through the meadows and the mountains of her daydreams, Addison journeys into my own and brings me along with her. How I’ve missed these magical places and familiar faces, and how lucky I am to see them again.