January 14, 2012

Sleeping Beauty

Subtitle: Starting to live again.

Bertrand laughs at Victoria. "You don't play the piano upside down, silly sister!"

The past 4 years of our family have drawn a parallel to the story of Sleeping Beauty. In our case, the handsome prince Bertrand was our sleeping beauty. And, the unexpected hero has been the fearless little queen Victoria.
Of course, Bertrand is a hero. He is the protagonist of this blog and is always in the spotlight. But in this story, we discover that a tiny imp of a sister can be a hero too. :)
You see, when we moved to Utah we learned that Bertrand had medical issues, the extent of which were unknown at the time. Our lives in many ways became frozen. In a state of suspended animation, we focused solely on Bertrand's condition, diagnosis, treatments, quality of life.

With the exception of Bertrand's room, our house was frozen in the state it was unpacked in. Our hobbies were squelched and our habits became entrenched, in spite of concerted efforts to kick start life again. It was Groundhog Day. We were living in the moment... to a fault.

The birth of Victoria has changed all that. The thawing started with baby-proofing, but has extended much deeper. We're living each day to the fullest, but like we have a future too. Bertrand's special needs trust bank account was opened. Matthew lost 40 pounds and got in shape--to be able to care for Bertrand and walk Victoria down the aisle. (Which will be difficult as I may never allow her to date.) I've started to rediscover my hobbies and work on my own health--again for Bertrand as much as Victoria.

The biggest eye opener for me was the holidays. For the first time in 3 years, I didn't burst into tears at every catalog and commercial depicting happy, able-bodied children opening presents, decorating gingerbread houses, or engaging in snowball fights. I was able to smile as I witnessed Victoria enjoying those things and Bertrand enjoying them in his own way! The joy I found in his accomplishment wasn't forced. She managed to take the unintentional burden off of Bertrand to conform, and for that alone I am grateful.

Bertrand's life has gotten infinitely richer because of his little sister. Before Victoria, we paid lip-service to the concept of childhood, but our world revolved around therapy. Post Victoria, we play for playing's sake! We laugh together--a LOT! Bertrand's sense of humor has really come into focus, and I've come to know him even better than I did when he had my unwavering attention.

As with anything, there are ups and downs. Victoria's progress has opened a lot of old wounds and grief. But, the experience, I think, is a healing one. The pain has been akin to breaking a bone to set it correctly rather than just rubbing salt in a wound for no reason. It frees us.

All that to say, we are extremely grateful for both our wonderful children! We know that "happily ever after" isn't guaranteed, but at least it's possible. :)

Happy 9-month birthday, Victoria!


  1. Isn't it amazing what hope can do for everyone. Hope in your family's future, hope in outcomes, just plain hope! This post made my heart smile and brang back many happy memories♥ I will miss seeing you weekly!

  2. Victoria lives up to her name :) (dare I think that was partly why you picked it?) I'm glad you're having a second spring.

  3. I love this post! You guys are the most amazing parents and I am glad both of you are starting to make time to take care of your selves. That is actually one of the things I am currently working on also! The Chiropractor told me that I needed to take care of my self...it's easy to forget about our selves when it comes to our children. That picture of Victora and Bertrand is just PERFECT! I love how much he loves his sister :)

  4. Inspired and soooo happy for you!