Two Years Ago Today

Claire standing in her stander, one of her favorite activities! 

There are moments in every person's existence where life changes forever. 

Sometimes, the moments are good, like the receipt of a promotion or the encounter of the love of your life.  Other times, though, they are not so good, like the loss of a loved one or the announcement that your parents are getting a divorce.  Good or bad, these moments almost always are memorable.  Years later, you can recall even the most insignificant details of the day, like what you were wearing or what you had for breakfast that morning.   

Two years ago today, Brad and I lived one of those moments.  During a prenatal ultrasound, a sizeable amount of fluid was detected on Claire's brain.  We were told on that day that Claire had  hydrocephalus and that given the amount of fluid present, her prognosis was grim:  She would be severely disabled and would never walk or talk, eat or breathe on her own.

Two years later, many of the doctor's predictions have turned out to be correct: Claire is severely developmentally delayed.  She can't walk, sit, or roll on her own and doesn't even have full head control.  She is still learning to reach and grasp things, and she isn't shaking toys or transferring them from hand-to-hand.  And although she loves to babble, we have yet to hear her first word.

But there are some things those predictions did not cover:  Claire is an incredible little person.  She is equal parts sweet and sassy, and sometimes she's just plain silly. 

• She loves to snuggle into your arms and put her hand on your skin underneath your shirt collar.  She loves to rub her face on your chest and will always tilt her head back to look up at you. 

• She has been known to pull food out of her mouth with her bare hands if she doesn't like what you are feeding her.  Any attempt to tickle her or give her too many kisses is met with an angry "meh!"  And if she tires of an activity, she will grump until she is picked up and held or given something new to play with.

• When she plays, she loves to hear the sound of her voice and will babble to herself nonstop, blowing raspberries intermittently and kicking her legs in excitement. 

The past two years haven't always been easy, and even now, there are days when the realities of Claire's condition stir within me a wistful sadness, as I think about some of the experiences we likely may never enjoy together here on earth:

• Her throwing her arms around my neck, and with a kiss, exclaiming "I love you, Mommy!"

• Her excitedly running towards the Christmas tree on Christmas day and furiously tearing open the wrapping paper on her presents.

• Her swinging all by herself at the park near our house or climbing up the play structure to go down the slide.  

On the day that my life changed forever, these scenes became a hope, rather than an expectation.  But beginning on that same day, Brad and I started to develop a deep sense of appreciation that continues to grow within us.

We no longer take anything for granted, and we are grateful for Claire just as she is.  For all the milestones, accomplishments and experiences we may miss, we would not trade the sweet, sassy, silly girl we love so dearly.

So, on this day of reflection, I feel humbled to be the mother of a little girl who is loved by all who know her and adored by some who have never even met her.  Claire has made me so proud to be her mother and has changed me for the better.

In the words of Claire's music therapist, Ms. Jacque:

Claire is Won-der-ful!

If you want to read my reflections from last year, click here.