Sunday, December 28, 2014

Clara's Friend Birthday

Clara turned four! We haven't quite figured out a defined frequency for friend parties, but I figured that since I was feeling up for it and Clara wanted it we'd go ahead and do one.  Clara has been obsessed with Joseph and the Amazing Technicolor Dreamcoat for several months and we listen to the soundtrack several times a day.  A few weeks ago, she woke up in the morning and came running out of her room announcing that she wanted to have a Joseph party.

We decided to go with a technicolor theme (I use the word theme loosely), and had lots of fun getting everything ready. First up, invitations.  For me, this part is the most fun. I designed the invites and Clara designed the envelopes.

Decorations consisted of crepe paper and balloons. Easy peasy, and when you're four, balloons double as entertainment.


I had an idea for the kids to color Joseph's coat as they came in the house.  I was going to sketch a cartoony Joseph on butcher paper.  But my mom had an even better idea - make Clara her own little dreamcoat for her friends to color as they came in.  It was darling!  I sketched out a quick pattern and my mom serged the edges in one quick afternoon.  It turned out so cute and the kids had a great time coloring it.

For activities, we did a little bowling for rainbow pins game, and painting technicolor masterpieces.



Then we had a quick snack, some birthday cake, and opened presents.  The cake didn't work out how I had hoped, but I was totally fine with it (and Clara was too!).
 



Andrew didn't want to be in the picture, but here are Clara's cute little friends from Primary.  She was a little anxious about opening presents.  She told me later that she was nervous because she "didn't want to be disappointed."  I'm pretty sure most children that young aren't so in tune with their feelings, but Clara's always had a lot of self awareness.

Clara had a lot of fun and is so lucky to have a great group of sweet friends to grow up with! We love our little four year old!

Christmas 2014


We had a really wonderful Christmas this year.  We had about 10 days of staggered illness up until Christmas Eve (lots of vomit), but the when we woke up on Christmas morning everyone was [pretty] healthy.  A Christmas Miracle!
Spencer and I woke up around 7:30 and just laid around waiting for Clara to come in and get us.  It was finally about 8:30 when she did.  I was surprised that her footsteps were so typical.  The door opened from her bedroom and she scampered right into ours - no pause to look at the lights, no dash straight out to the tree.  I wondered if she had forgotten that it was Christmas morning, but she remembered.  We opened a few gifts, had a nice breakfast, opened more gifts and enjoyed the first snow of the season. Yep - we had a White Christmas!

Clara was super excited to find her trampoline (from Grandma Margie and Grandpa Brent) and ran straight to it saying, "Mom!  Look!  A trampoline for Betts!"  It was super cute.  She was completely enthralled with all of her gifts and gave enthusiastic shouts all day long like, "This is AWESOME!" or "My robot is just FANTASTIC!" She was thrilled at the orange in the bottom of her stocking and shoved it in my face, "Mom, just smell it!" Christmas Oranges has become one of our favorite Christmas books this season and she actually fell asleep as I read it to her on Christmas Eve (dare I say, another Christmas Miracle?!).

Betty was pretty zoned out for most of the morning and didn't really engage with any of her new toys, though she did enjoy some of the mylar wrapping.  Clara was great to help Betty unwrap her presents, and offer to let Betty unwrap some of hers too.

In the late afternoon we joined both sets of parents and Aunt Carol at the Evans' home for a lovely Christmas dinner and more presents!  We definitely feel blessed this Christmas to have all of our needs (as well as lots of wants) met - to be warm, healthy, safe and comfortable. And to have this sweet little family to share it all with!

Friday, December 12, 2014

Betty. Right Now.

I've always wanted to be good about documenting my children and their development.  I wrote each week for Clara's first 52 about what she was doing at that time and I took weekly photos, then monthly photos after she turned one.  I knew that a second child could prove a little harder to keep up with, so I settled in to a monthly summary with a monthly photo shoot.

But then, after a few short months with Betty, things got kind of hard.  The months started to look so similar.  Progress was so subtle.  So I stopped recording.  And now, of course, I totally regret it.  Betty has come so far in the past year, and I've hardly written a thing about all of her growth and development!  I make myself feel better by noting that we have summaries of her development from every early intervention visit (a few a week), but still.  I'm here to give a hearty update.

At 22.5 months Betty:

-Can SIT unassisted for several minutes!  So many minutes that I don't even look at the clock anymore.  And I even feel comfortable leaving her for a few minutes to grab something from another room. She can sit and manipulate toys with both hands, reach across her midline for a toy (with some coercion), and reach up for a toy.  She can't get herself into or out of sitting position by herself, but very cutely braces herself for a fall - squinting her eyes, tucking her chin and going to the side as much as possible.
-ROLLS everywhere.  She's been a solid roller for a few months and can reliably roll tummy to back and back to tummy.  Her most favorite destination currently is the Christmas tree, where she can bat at low hanging ornaments with hands and feet.  She also loves to roll herself under furniture and get stuck there.

-Takes a few STEPS and BUNNY HOPS in her gait trainer.  We work on gait training every day and the progress is slow, but it's coming.  We have all the inserts and handle bar (for me) in right now, and if I push her, she'll do some reciprocal stepping or bring her feet back in front of her in a bunny hop, but it's not at a "walking" pace yet.  She wears cute pink DAFOs and Converse All Stars.  We're hoping to wear out the tread a bit on the shoes some day. She loves to untie her shoes.

-Can BEAR WEIGHT and enjoys supported standing.  We do lots of stander time, and I think it's really helping!  She can't stand (at a couch for example) without some help yet, but she's getting there.  Her braces really help with this too.

-EATS like a bear!  I'm so thankful for her hearty appetite!  She eats just about everything without hesitation.  Her oral motor skills have come a long way and she's chewing foods really well now.  She feeds herself with her hands and does NOT like being spoon fed.  She wants to do things herself.  Drinking is still a struggle.  She drinks from a straw or a cup, but either way most of the liquid comes back out.  We've been working on this for many months.

-Wakes up HAPPY! Betty's happiest time is when someone comes in her room to get her from her crib.  She squeals in delight, kicks, claps, and smiles!  It's so rewarding.

-Has ZERO stranger anxiety.  She'll happily go to anyone for any period of time.  This probably sounds like the dreamiest thing ever to any mom who has struggled to have anyone watch their kids or drop them off at nursery.  But it can be kind of hard.  I know she knows me and our family, but sometimes I want her to show me a little more. (I may regret saying that)

-CLAPS and gets excited when other people clap.
video

-PUSHES UP on her arms when on her tummy.  Those little arms are getting stronger all the time.  She will also push up on hands and knees and rock front to back.  I couldn't dream of her doing these things a year ago.

-VISUALLY TRACKS objects and reaches for them.  She still doesn't use vision to find dropped objects (her sense of touch is pretty incredible though and her hands often go straight to the things she drops without missing), but she is using her vision so much more.  She will track side to side, up and down.  There are definitely still times that she zones out visually (especially when tired or overstimulated), but her vision has improved by leaps and bounds.

-TURNS PAGES in books.  She still has a hard time sitting and listing to and looking at books during a story, but if we give her a book of her own, she enjoys turning the pages.

-SLEEPS pretty well most nights, wakes fairly early (usually b 6:00).  A lot of PSS kids have erratic sleep patterns, and Betty's no exception.  We wonder a lot just how much she actually sleeps. Sometimes we'll go in before bed to check on the girls and Betty will be laying there quietly sucking her thumb (eyes open).  She'll also typically have 1-2 good weeks of sleep and then 1-2 weeks of disrupted sleep.

-Is getting a lot more VOCAL.  She's getting more opinionated (especially about food.  Mostly wanting it.  Right. Now.) and finding her voice.  She does some "singing" and makes lots of great sounds "bee, bo, bah, mau, fffff, mama, da, ra" are some that come to mind.  Plus she's a squaker extraordinaire.

We LOVE Betty so much.  I'm so thankful for the joy she brings to our family and the progress she is always making.  She's a sweet, snuggly, content little girl!  I really feel so blessed to be her mama.  Her cute personality is shining through more all the time and we just love her to pieces.


Sunday, November 30, 2014

Never Suppress a Generous Thought


I think I first heard the words while I was at BYU.  "Never suppress a generous thought," attributed to Camilla Kimball, struck a chord with me as words to live by.  I have tried to implement this wise guidance in my life, but still find myself setting aside inklings to do good or getting too distracted to sit down and write/call/text that friend who came to mind.  More impressive than my efforts, are those of so many people around me, who have heartily been aware of and responded to needs, seemingly without giving a second thought.

When I was first married and "officially" entered the world of taking in meals, those occasions were pretty scarce - limited to assignments for funerals or new babies.  Now, at the ripe old age of 32 I have had numerous encounters with the harsh-yet-subtle realities that leave each of us needing help - or even just love and encouragement.  Friends and neighbors have had children in the hospital, spouses work insanely long hours, miscarried babies, lost children, dealt with unemployment, depression, anxiety, hit rough patches in pregnancies, marriages, and relationships with other family members.... the list goes on. Elder Eyring counseled, "When you meet someone, treat them as if they were in serious trouble, and you will be right more than half the time."

Aside from being kind and sensitive, I have come to recognize the need to act.  People all around are carrying heavy burdens, many quietly.  But when we find out about the needs and struggles of others, how tempting it is to hang back, to give them space to mourn, to grieve, to work it all out on their own.  Understandably, we are easily paralyzed by the encompassing nature of certain trials we watch our friends wade through.  We think, "There's no way I could fix that," and so we do nothing.  Mortality is full of challenges that are beyond fixing, but I've learned that loving is better than fixing.

In The Church of Jesus Christ of Latter-day Saints, we believe in covenants.  The first covenants we make as members of the church are at baptism, and they include a promise to "mourn with those that mourn" and "comfort those that stand in need of comfort."  Those covenants not only bind us to Christ, they bind us together.

In the past two years, our family has been on the receiving end of so much good.  To be honest, it's a little more than I am naturally comfortable with (how many of us really want to need help?), but I have been so grateful to wonderful friends and family who have simply acted on those generous thoughts.  We've received hugs and prayers and tears.  Meals and cupcakes and flowers.  Texts, notes and phone calls. Boxes of creamies and loaves of homemade bread. Visits and chats providing guidance and assurance.  Countless offers for babysitting.  Countless hours of babysitting.  Earlier this year I casually mentioned (on facebook) a new technology that would be cool for Betty to have, and friends and family members - some I haven't seen or spoken to in more than a decade - lined up asking if and how they could help provide it.  I couldn't believe my eyes, when later that day I checked my email and found a gift card covering the cost.

When Betty was two months old, she had to have a brain MRI at Primary Children's.  Because she was just a small baby, she had to be sedated for the procedure and we spent several hours at the hospital getting her prepped and then waiting in recovery.  The procedure itself was relatively quick, but all told it took more than half of our day.  When Betty came out into recovery we waited at her side until she woke up.  While she slept, a text came and my phone buzzed to notify me.  It said simply, "I'm bringing dinner."  I hadn't thought about dinner, or the fact that we would even need dinner.  But there my friend was stepping right up to help.  Not asking if she could help; not asking if she could bring dinner.  But doing.  Acting.  Being.  Not suppressing that generosity.

In this season of Thanksgiving, we often focus on our thanks.  But this year my gratitude has more than ever to do with giving.  And the people all around me who do it so well.

Saturday, November 29, 2014

A Little Family Getaway


This summer, when for a few short weeks Spencer's work schedule became manageable and we started having dinner together as a family again, we started talking about taking a family trip.  Other than trips with extended family and little overnighters in Park City or downtown, we hadn't taken a good, old fashion family vacation since Clara was just over a year old.  Actually, that was kind of a quick weekend trip too!  I guess we aren't very good at taking trips, but it's something we're working on.  We debated spending a weekend at the beach, but as work started to pick up again we settled on a local-ish destination: Moab, Utah.

We hadn't been to Moab since our first anniversary, but it's a great little getaway.  Clara loves to hike and explore the mountains and canyons close to home, so we were pretty sure she'd love it too.  Betty qualified for an Access Pass (free entry to all National Parks for life), so we wanted to take advantage of that since there are two great parks in Moab. Plus, Spencer's cousin generously offered to let us stay at their vacation home there.  Everything came together pretty perfectly.





  

  
All told, we went on four great hikes together as a family.  Spencer carried Betty on his back in the Ergo and Clara pranced along happily, throwing rocks in rivers, enjoying the natural sand boxes between rock crevices and basking in all of the beauty of Heavenly Father's creations.  More than once she said, "Wow, Heavenly Father did a really great job making this!" She was a real trooper on some of the longer hikes!



Because a "polar invasion" blasted most of the country while we were there, it was on the cooler end of November's spectrum of temperatures, but the high 30's with sunshine proved perfect hiking weather.  Clara refused to wear a coat, but we all ended up removing several layers along the trail, once again authenticating the wisdom of a three year old. A three year old who also happens to be a great photographer!


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.

Sunday, September 15, 2013

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. 




 
  



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