os-disneynature-bears-trailer

My youngest pixie, 5 years-old, is currently obsessed with the Disney Nature movie Bears. She runs around the house pretending to be a cub escaping danger and my job as the Mama Bear is to open the basement door when she roars– saving her from the wolf. Don’t I wish it was that easy to save my girls from harm, simply open doors and let them dash through.

My little cub is having heart surgery next week. We have been watching her murmur, Subaortic Stenosis, for most of her life and we suspected this day would come. Her heart has a small membrane in the lower left vertical that should not be there. As she grows, it is causing her valve to leak. Her surgeon will remove that tissue in a routine procedure. We love her Cardiologist and have absolute faith in our local Children’s Hospital. Simple, right? Yes, until I picture her little frame on that surgical table, which causes some sort of deep panic I’ve never encountered before. I will hold her bitty hand and tell her that it will be hard, but we can do this.

Adding to the fun, my oldest was diagnosed with Chronic Fatigue Syndrome this past year. Ultimately, we are okay. We will be okay. This is what our family does really well, what we’ve practiced at through years of medical adversity. The three of us girls have founded our own Unicorn Club, no one with “normal” health allowed! We do puzzles, obsess over crafts on Pinterest, watch Cake Wars and bake insane chocolate chip cookies. We mix the reality of pain and anxiety with hope and determination. We trust that their extraordinary dad will never join our club, remaining the anchor in our ever changing tide.

Along with watching Bears, we are listening to the movie theme song “Carry On” constantly in the car, like 5 year-old constantly. It is suitable theme song for the Freckle Girls:

There’s always gonna be some canyon in the way
There’s always gonna be a river I cannot cross
Somewhere along this path that’s chosen me
I know I’m gonna fall down, feel lost, feel weak
But wherever it leads

No one said this would ever be easy, my love
But I will be by your side when the impossible rises up
We will travel this life well worn
No matter the cost, no matter how long
We will leave our footprints behind
And carry on
Carry on…

Our boat is going to take on some water next week. We have our paddles ready. We will be okay.

2 thoughts on “Mama Unicorn

  1. I hope your daughters surgery was a success. I have enjoyed reading your blog. I have sphincter of oddi as well. I also have fibromyalgia and have had my fill of pain.

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    1. Hi Shelly, Thanks so much for writing! Her surgery was very successful and she started Kindergarten a few weeks ago. I’m very sorry to hear that you are dealing with SOD and Fibro, it is always a challenge. I’ll be keeping you in my thoughts.

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