Thursday, November 07, 2013

An Especially Beautiful One

Preface: I've debated whether or not I should post this.  I wonder a lot about posting specifics regarding the challenges my children face.  But I have also found so much comfort in connecting with other parents via the internet, and particularly those who are on a similar journey.  So here goes.

A few weeks ago, our lesson in Young Women's was about Christlike love.  Mary, who was teaching, shared a lovely story of a woman named Mary Bartels who had eyes to see everyone she met as a child of God.  You should click through and read the whole thing (and the whole talk), but I found the end of this story particularly touching:

...Mary was visiting with a friend who had a greenhouse. As she looked at her friend’s flowers, she noticed a beautiful golden chrysanthemum but was puzzled that it was growing in a dented, old, rusty bucket. Her friend explained, “I ran short of pots, and knowing how beautiful this one would be, I thought it wouldn’t mind starting in this old pail. It’s just for a little while, until I can put it out in the garden.”

Mary smiled as she imagined just such a scene in heaven. “Here’s an especially beautiful one,” God might have said when He came to the soul [of the little old man.] “He won’t mind starting in this small, misshapen body.” But that was long ago, and in God’s garden how tall this lovely soul must stand! 

I wept as I listened and couldn't help but think of my sweet, sweet Betty.  Just a few days prior I'd gotten the phone call with results from her genetic testing, confirming a diagnosis for our darling girl.  Truly one in a million, Betty has a very rare genetic disorder called Potocki-Shaffer Syndrome.  There are roughly 40 reported cases. 
Because it is a syndrome (which inherently means symptoms and outcomes can vary greatly), and because there are so few cases, we are still pretty uncertain about what to expect for Betty.  From what we've been told and research we've done, we expect that pretty much every area of her development will be/remain delayed and impacted on the "moderate to severe" end of the spectrum - motor skills, speech, cognitive and social skills, etc.  The syndrome can also be associated with hearing loss, visual impairments, low muscle tone, autistic behavioral traits, and multiple exostoses (extra bone growths).

Since getting the news, it's interesting to me that I cannot stay in a dark place for long... my mind continues to go to the things I'm thankful for: wonderful friends and family who have reached out and shared hugs and tears and sent up prayers in our behalf, modern technology that has allowed me to connect with a few other moms who have children with the same syndrome, our proximity to a top-rated children's hospital and a great team of doctors, a syndrome that doesn't seem to threaten any vital organs or alter life-expectancy, our darling Clara who is completely in love with little "Betts" and will likely be an advocate for her throughout her life, sweet Spencer who adores our girls no matter what, and a wonderfully content, easy-going and sweet baby who is stretching out the snuggly "newborn" days far beyond what you'd typically expect.  Every time I reflect on the blessings that have come, Betty herself tops the list.  She is so much more than this syndrome. She brings us such joy and we feel so fortunate to have her in our family. 

Even though we've been blessed with a lot of peace and comfort along this journey so far, it still hurts my heart to think about the future and all of the unknowns.  I try to stay positive and think about today.  When thoughts of the future creep in, I remain hopeful that Betty could be one of the "best case scenario" outcomes that PSS has ever seen. But even if she's not, we are still wildly in love with her and know that she will refine and polish our family in ways that no one else ever could.  After all, she is an especially beautiful one.
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