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.

11 comments:

Mollie said...

She is an especially beautiful one! I think you will find great power and support in sharing your story. We are all here for you guys, ready with a listening ear, prayers, and open arms. We are so lucky to have sweet little Betts in our family. And on a side note, Olivia has that same little dress that Clara is wearing in the picture with Betty, so someday, they can have matching dresses!

Jackie said...

Betty is so beautiful! You are such a strong Mama and she is so lucky to have you. I love how much Clara loves her. Thanks for sharing.

Nga said...

Thank you for sharing Betty's story! Keep staying positive!!

Katie said...

Sarah, this is so well written. Betty is a beautiful little girl, and your positive and eternal perspective will be a strength and support to other families throughout your life. Love you.

Cindy Madsen said...

Betty is so blessed to have you and Spencer for her parents...and especially Clara for a big sister. Plus lots of extended family who love her no matter what! That's just what families do...thanks for sharing your beautiful TESTIMONY.

Jess said...

She is so precious! My kids saw me reading this post and saw her picture at the end and kept saying, "awww, she is sooo cute!" She is so blessed to be a part of your family and to have you as her mother. She will achieve great things because she has wonderful parents and a great big sister! I'm so glad you shared Betty's story. It is never easy to watch your children struggle, but you have amazing perspective and faith. I will keep your family in my prayers.

LV said...

From a long ago teaching friend,
My heart and prayers go out to you. Quite the journey life is. You have always radiated love and light and although it's been awhile, I feel it again through reading your inspiring post. Your girls are beautiful!

the House of Payne said...

God bless you all.

Alicia said...

We are saying prayers for Betty and for your family at our house!

it's me, andrea. said...

She really is absolutely beautiful. She's so blessed to be in your family. I'm praying for continued strength for you, her, all of you. I love your perspective and attitude. God bless!

Annette said...

Thank you so much for sharing your story! I will continue to pray for you and your family. What a beautiful explanation and pictures!

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