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.

Sweet Sisters

I cannot get enough of these two!  Clara loves to hang with little Betty, do tummy time with her, give her hugs and kisses and squeezes.  If she's awake and Betty is napping she'll often ask, "Where's Betts?" She always wants to hold her, although lately she only lasts a few seconds before saying, "I'm all done!  She's too heavy!" They share a room happily and wake up singing to each other.  Such little sweethearts.  I can't wait to watch their relationship continue to strengthen as they grow up. 

 

  

Clara - 32 Months

Clara is so much fun right now!  Sadly I forgot to do a monthly photo shoot with her (one where I made her put her hair in a clip or something out of her eyes!).  But since I take photos almost every day, here are several from right around her 32 month birthday. :)
-Her favorite ways to move are twirling, running, and hop-hop-hopping.

-She is starting to LOVE pretend play.  She packs all of her guys in her little truck and tells me they are going downtown to see daddy at work, or visit Grandma Margie.

-Teddy and Baby are still her favorite side-kicks, though we do include puppy, bunny, sheepy, and "pec-a-lin" (pelican) once in a while. We're super creative with names for our stuffed animals (and our real ones...)

-Clara has a ridiculously good memory.  It really amazes me all of the people, songs and events that she remembers.  During "school time" I wanted to help her start memorizing some things and the first poem we tried (Little Things) she had down in a week!

-She has so much energy and is so bright and excited about everything.  I know little ones usually have a lot of energy, but I think her constant enthusiasm is a bit more unique and I just love her for the light it brings to our home.

-Clara's getting more and more independent.  She loves to put her shoes on by herself.  And take them off.  Usually the minute she gets outside, or in the car.  When she puts her shoes on the wrong feet, and if I tell her, she'll quickly take them off and put them on the right feet.  She'll ask me to make sure they're right.

-Clara is always aware of others and eager to heal wounds, offer hugs and kisses, or come up with solutions to make people feel better.

-She's so tuned in to how people are feeling.  When I get frustrated with her or another situation, she'll tilt her head to one side, look at me wide-eyed and say innocently, "Mama, are you a little bit upset?" (she's usually right!)

-We painted Clara's toenails for the first time this month, which she was super excited about (and I think I forgot to take a photo!), but I would not say she's girly about hair or other things.  Do you think she could be my child?  Ha.  She never wants me to do much of anything to her hair and only endures a morning comb through because I've convinced her that it's "just something big girls have to do."

-Clara does NOT like to experiment with trying new foods.  As much as she sings the Daniel Tiger song ("we try new foods 'cause they might taste goo-ood"), she will cover her mouth and protest if we ever attempt to get her to try something new (pretty much everything at dinner every night)

-If her hair is in her eyes and she's refusing a "pretty" (a hair elastic) or a "clippy" (clip), she'll push her hair to both sides of her face with both of her hands and say, "See, now you can see my pretty eyes."

-Has a strong aversion to dinner in general.  When I tell her it's time for dinner, she'll say, "no thank you! I want to have LUNCH!!"  I think it's because I tend to cater lunches towards what I know she'll eat (sandwiches, crackers, smoothies, apples, carrots, cheese, yogurt, etc.)

-She is in love with McDonald's.  YIKES!  How did this happen?  My little vegetarian, who otherwise has never even tasted meat (her call) will gobble down a chicken nugget happy meal in minutes.  If this is not a testament to the fact that those things are not made of meat, I don't know what is.

-Clara loves to wear "tie-tie" clothes... I made her a few shirts at our Bear Lake family reunion in July and they are her favorite "comfy" clothes.  I also did a pair of undies just for fun and they have turned into her favorites!  If she's wearing a tie-dye shirt, I better have those tie-dye undies clean and ready too!

-Still LOVES to sing and learn new songs.  Her favorite right now is "Mother, Tell Me a Story."  We sing it every night.  Multiple times.  And when we get to, "and gently speak," She says, "Stop.  This is my part."  And sings the rest in her darling little voice.

-Loves to build with her blocks and play with her train tracks!  Everyday for a good month we've been doing tracks and blocks and she never gets tired of it.

-Must be growing a lot because she takes 3-4 hour naps every afternoon. :)

-Is so aware of her baby sister and loves her SO much.  She always wants to give her hugs and kisses and make sure she is happy and warm and knows what's happening in the world.

Father's Day 2013

I had seen those cute little interview worksheets all over pinterest and thought it would be fun to do one in video form.  Here are Clara's thoughts on daddy this year.


Father's Day Interview 2013 from Sarah Evans on Vimeo.

The password is: clarajane

Easter Egg Hunt

On the Friday before Easter, we had a fun Easter egg hunt at my parents' house.  My sister Amanda was in town with her kids on Spring Break and they were headed home the next day.  Emma made signs early in the week to let everyone know of the upcoming event.

Before the hunt we enjoyed one of those rare, lovely days in March with a picnic outside.

Before the hunt, each kid was assigned a color.  They could only find eggs of that color.  My mom had cute little containers for the kids to keep their eggs in.

 Clara really enjoyed the hunt and finding all of her pink eggs.

 The of course, they all dug right into the loot after the eggs had been found.

 Clara wasted no time digging out her chocolate. And stuffing it right in her mouth.

 And she loved hanging out with her cousins. She and Josh are good buddies.

Betty Smiles

Even though Betty is a super sweet baby, it is tough to get a smile out of her.  It's getting a little easier, but that first "real" smile didn't come until she was 11.5 weeks old.  Thankfully when I got my camera out a few weeks ago, she obliged.  We just love this little muffin and all of her puffy cheeked expressions!

Betty meets Betty

On Mother's Day we hosted our families for dinner and my Grandma Betty was finally able to come meet our new little Betty.  What a sweet and special day.