My niece is a totally unique individual.
Not in that “everyone’s a snowflake” kind of way. She’s truly unique.
Because of a wonky chromosome, each cell in Anna’s little body is different from every other cell in the world. There is no one else like her.
At birth, she was given less than a week to live – she surpassed it.
At three months, she was in so much pain from simply trying to digest nourishment that my brother and sister-in-law had to make the unbearable decision to have Anna undergo a surgery that she most likely wouldn’t survive – but she did.
Since that first surgery, she has had at least a dozen more. I can’t begin to imagine the pain she has endured simply to live, but somehow she has.
We were told she’d never live past six months, a year, then every subsequent year since – but she has.
We were told she would never eat without a feeding tube, but she does.
We were told she would never walk, but she does (and climbs and dances and shoots hoops).
We were told she’d never be able to communicate, but she does.
She’s developed her own special sign language, yet still shows her love to us mere mortals in ways we can understand. With a quick hug or a pat on the head.
Anna is determination embodied.
Since the day she was born, I’ve learned from Anna.
She has a grace that I will never have. No challenge in my life will ever come close to what she has taken on.
And through it all, she has maintained a wicked sense of humor. When we want to hear her beautiful laugh, all we have to do is rap a knuckle, trip over a toy, or get bonked with a rubber ball.
Life with Anna is like a Three Stooges movie (my sister-in-law vows to never allow her to see an actual Three Stooges movie, she’s sure Anna would literally die laughing. I should add that S-I-L is the best mom I know).
Anna has done what I could never do – flip pain over and spank it on the rear.
David and I wrote a lot about what a great time we had in St. Louis, but nothing could compare to the joy we had celebrating Anna’s 20th birthday on our visit.
Yep, 20th birthday.
Thinking long and hard about how to celebrate this blessed occasion, we decided to take Anna on her first bumper boating adventure.
What could be more fun than bashing into unsuspecting strangers in a rubber boat?
Happily, our suspicions were confirmed.
Still, having never bumper boated ourselves, we didn’t realize how perfectly equipped they were for pure Anna pleasure.
Yes, there was bumping (double Anna-laughter points for bashing into her older brother and dad!), but there were fountains to splash ourselves under and, best of all, a trigger to push that launched a super-soaker stream for long-range drenching.
Trust me, there aren’t many things greater than being able to push a button and watch your Uncle David get annihilated by a high powered stream of water (not gonna lie, I found pleasure in that aspect too!).
Anna has taught me to live in the moment and find joy in the unexpected.
To laugh when things aren’t going my way.
She tells me that every day is a blessing, Aunt Roni, so quit yer whining.
And that it really is funny when Uncle David forgets to duck and hits his head when climbing into BAMF.
Veronica, GypsyNester.com
YOUR TURN: You’ve met my sweet niece, isn’t she the greatest? Who do you have in your life that inspires you like Anna inspires me?
Best wishes!
Best wishes!
Beautiful.
Yes she is!
Veronica,
So honored to have “met” Anna. Thank you. I shall remember her and her struggles. (and her mom’s)
Sweet, sweet story.
Josie
Thanks Josie, we are honored to have her in our lives.
Happy Birthday to Anna. Good for her and all those who have supported her and enjoyed her company and learned from her. All my best to Anna and her loving family members.
Thanks Karen, she really is special.
I’m inspired by doing volunteer work in developing countries and meeting others so different yet so similar-they love their children and care for their family the best way they know.
So true Phyllis, thanks for all you do.
I also have a niece with special needs. My sister, her mother, inspires me. My sister is the quintessential middle child–kind of all over the place EXCEPT when it comes to her now 17 year old daughter. For her, my disorganized sister is organized. For her, she will advocate like a pit bull with any bureaucracy or medical professional. My niece enjoys a rich, full life.
Sounds a lot like my sister in law.