"Wait and See"

Because of the kidz blog, people -- complete strangers -- often reach out to me when they have a new diagnosis for their child, or no diagnosis for that matter. I'm glad to be of any help I can, although it's very limited. I've been corresponding quite a bit with one mother whose experiences with her child, so far, have reminded me a lot of our experiences of first learning about Chloe's condition and all the frustrations we had during that process.

This sweet mom keeps asking me what to expect.

"Will she do this? Will she do that? Will I be able to do this with her? What will people think? You don't think she'll need a wheelchair, do you?"

I find myself giving the response that used to make me cringe.

"You'll just have to wait and see."

Ugh, I remember thinking that was such a cop-out answer from doctors. I thought for sure they knew and they just didn't want to tell me the grim truth or were afraid to give me the hope I was seeking. But with a couple years of wisdom (provided by Chloe) and motherly experience under my belt, I realize it's the truth. You just don't know. No mother really knows those things about each of their children, but especially those children with special needs. And so here I am just a few short years later, echoing those words I used to dread, yet heard so often.

"Wait and see." To which I add, "She will be who she is and do what she does and you will love and simply adore her."

I understand now that there are so many things that a medical professional could never have guessed about Chloe. What a joy it has been to wait and see all the things that make her -- her.

• How much she loves to snuggle.
• The way her eyes flutter and her lips turn up in a smile as she drifts off to sleep.
• The way she loves to hug and kiss everyone -- teddy bears, dolls, family, friends, strangers, cartoon characters, pictures in books. She loves to give love. She IS love.
• How special her hugs are. We help her put her arms around our necks, but then she squeezes just as hard as she can and it feels an awful lot what I imagine heaven will be like.
• How just when I'm in that heavenly hug, she mischievously starts yanking on my hair and giggling because she knows she's not supposed to pull on mommy's hair!
• How she has the tightest grip imagineable and sweaty little palms from always being fisted, and so when she gets those hands tangled in my hair, it takes an army of about 5 adults to unravel the mess. I've asked for help from strangers in stores and in parking lots one more than one occasion just so I could go on with my day.
• How before I had Chloe, if I had known about having to ask strangers for help getting my child to unclench my hair, I would have DIED at the thought. But how when it happens, it seriously makes me laugh so hard!
• How much she loves to play dress up with funny hats and silly head bands. She'll fuss, though, if I dress her up and don't show how cute she looks in the mirror.
• How much she loves girlie things -- earrings, ruffles, pretty shoes, cute clothes, pretty bows, and even make up! I put blush on her while I'm getting ready almost every morning or she'll fuss. On special occasions I let her wear eye shadow too.
• How much of a terrible sleeper she is.
• I think she's a terrible sleeper because she wants to be with people, not alone.
• How when I hear her first cry at night, I actually wake up in relief that she's alive. No matter how hard I try not to, I worry every single night that she's going to pass away.... that she won't be able to get out of a position that restricts her airway and she won't be able to cry for help. Or that we haven't checked something in her heart and it will just stop one day. It's illogical. She'll probably live a long lovely life, but if she goes to heaven even one minute before me, it will be far too soon.
• How after the fourth or fifth time she wakes up in the night, I get angry. And then I feel guilty for being angry. And then I get over all of it as soon as I'm holding Chloe because she lets me know it's okay -- to not be angry or to feel guilty, because love is all I can feel when I'm with her.
• How much I love laying in bed with her at night and studying her face in the moonlight.
• How even though she doesn't "speak" very often, she still communicates very well.
• What a silly and fun personality she is. How she goes to give me a kiss sometimes, then when I'm swooping in for it, she turns away and giggles hysterically.
• How much she loves music.
• How much MORE I love her when she's sick or hurting.
• How I actually like to smell her farts or poopy diapers. Don't think I'm a sicko, I don't actually like the scent, but I like knowing that her digestion is working that day!
• How cute it is when she pouts.
• How precious she looks in her wheelchair and how much I love her wheelchair -- the color, the freedom it gives us -- I love it.
• How excited she gets when daddy comes home.
• How she never gives up when she's trying to accomplish something.
• How hard she works just to turn her head to the left. Or to the right. Or to hold her head up. Or to swallow. And never feels sorry for herself or acts frustrated.
• How much she loves to dig crayons out of a box just to throw them on the ground and dig more crayons out and repeat.
• How much I love to hear her giggling in the other room, just having fun playing by herself.
• How much I love to watch her playing with other children and not wanting me to come get her.
• How much she loves to be the center of attention.

Wow. I didn't realize what a Pandora's box this would be. I could go on and on and on and on.

My point is this. My list has nothing to do with Chloe's milestones (or lack thereof), test scores or physical strength. It has to do with the BIG SOUL she has inside that little body. It has to do with the person she is, that no physical condition could alter, and the special lessons she teaches.


She is smart and has tested very well cognitively. She has been able to accomplish many things physically that I once didn't know would be possible. But those things don't matter much to me. Not anymore. CHLOE is all that matters and I can't "wait and see" what other beautiful, special, funny, delightful and amazing things I get to find out about her and learn from her and love about her along this unexpected yet wonderful journey.

Christmas

Sweet Chloe was sick for all of Christmas. It definitely made for an unconventional time and missing out on many traditions, but it was a Christmas day filled with smiles, so it was still good!


For the most part, I kept Chloe quarantined in her bedroom. We didn't want to get anyone else sick and with Chloe's immune system shot like it is, we didn't want her to catch any secondary infections. Her bedroom was a fun place to hang, though. It's her favorite place to be because she loves to play with Teddy, Penguin & Snowman, she loves her tree and she loves her snow globes.


My sweet girl was fighting a fever and had a terrible eye infection all Christmas day. But she still had lots of Christmas joy despite it all!


The only traditions we kept were opening presents in the morning and hanging out with Grammy and Papa during the day. She got lots of fun presents from Santa and still has more presents to open when she's up to it from Nana & Papa! Her 6-foot piano from Grammy was definitely her most favorite gift. It plays such fun music when she kicks on it! I can't wait to see her play on it when she's actually feeling well!

About half-way through Christmas day, I realized that Chloe had given me a Christmas gift -- her sickness. My eyes were swollen and infected, and I had fevers, chills, body aches, sore throat, etc, etc. It was nice of Chloe to get me something, but to be honest, I hope next time she gets me something different! I was pretty much a mirror image of Chloe, but my pj's aren't nearly as cute as hers.


It was a major bummer to miss out on our typical Christmas traditions. Next year when we're healthy for Christmas (knock on wood), I won't take anything for granted. I love being with our families and watching the kids play with their new toys and eating yummy food and it truly made me sad to miss out on those things. But there's always next year, and we did have a blessed day filled with the true Christmas spirit of love and charity and gratitude for the eternal gifts our Savior brings. We hope you had a wonderful Christmas as well!

Merry Christmas!

To all of our bloggy friends:

We hope you have a happy healthy holiday!!!!

Family Videos 2010

Here are the videos I made for Christmas gifts on each side of the family showing the highlights of 2010. Chloe loves watching them, she blows everyone kisses while the videos play! I've actually been really glad to have these to help entertain her the last couple of weeks while she's been sick. I'm sure no one outside our families will watch these, and that's okay! (they're kinda long)....

Aren't we so blessed to have such amazing families and to be so close them?!?! I feel lucky every single day.

Anchor

For quite a few years, I have had a pivotal Christmastime moment when a song strikes me and becomes my "theme" for that season.

What's weird about these special songs is that I don't seek them out. Somewhere I'll hear lyrics that will strike a chord or I'll be listening to a song that I've heard a zillion times and suddenly I'll get its meaning more profoundly.

I'll share just a couple examples. Two years ago it was I Heard the Bells on Christmas Day. The reality of Chloe's diagnosis was setting in. Many members of my family were not speaking. I frequently had a heavy heart. But these lyrics brought me SO MUCH hope and faith that one day all would be made right.

And in despair I bowed my head;

"There is no peace on earth," I said,

"For hate is strong and mocks the song

Of peace on earth, good will to men."

Then pealed the bells more loud and deep:

"God is not dead, nor doth He sleep;

The wrong shall fail,

the right prevail

With peace on earth, goodwill to men."

Last year it was Oh Come Oh Come Emmanuel, because I had several loved ones dealing with significant health issues and even death, and these lyrics:

From depths of Hell Thy people save
And give them victory o'er the grave

Disperse the gloomy clouds of night
And death's dark shadows put to flight.

Rejoice! Rejoice!
Emmanuel shall come to thee, O Israel.

.... these lyrics would knock me to my knees almost every time I heard them. It was incredible and truly brought the Christmas spirit last year, realizing that the sorrow I saw all around me would one day be reconciled because of the baby's birth we were celebrating.

This year was no different, I have a song that has been so special to me. But, the weird thing is, it's not *officially* a Christmas song. It's been on my itunes for most of the year, and I heard it on shuffle a couple weeks ago, right after we got home from vacation. I was rushing, rushing, rushing around trying to get things done, getting everything in order, going above and beyond in some areas and totally missing other areas of my life, and actually resenting Chloe for being sick.... doesn't she know I have other things I have to do other than take care of her?

And then this song and its lyrics. And I knew. Chloe was sent to Oby and I for so many reasons, it's impossible to put down in words. But one reason I know for sure that I need her in my life is to bring me down to earth.... to keep me from aimlessly darting around working on projects and cleaning and folding laundry and being with friends and planning things for the playground and working overtime and working on projects (did I say that already? oh, well I always have 100 projects I'm working on so it's worthy of being mentioned twice).... I'm always doing things that might seem "good," but are actually completely unimportant.

But Chloe, sweet Chloe, she is my anchor. She is the epitome of unconditional love and a constant reminder to slow down, enjoy the simple things, and to focus on the only truly great thing ~ love. Chloe has been pretty darn sick for the better part of this month. She had croup on our vacation. It turned into Influenza B, and now she's got a terrible virus. And now when I'm rushing and feeling that caring for my sweet, beautiful baby is an inconvenience, or that her getting sick NOW during the holiday season when there's so much to do and so many places to be is terrible timing.... SHE anchors me. She brings me back to focus on the reality that LOVE and simply being with the ones you love is what matters. And because she's been sick, I've actually felt the Christmas spirit more than ever. To recognize that the greatest gift is having my family close and healthy, even with a minor virus to tackle.... well, that's more important than any of those presents wrapped under my tree. And because of my anchor, I've been enjoying the Christmas spirit more than ever by reading books about snow men and wise men to my angelic child in front of the Christmas tree lights, feeding her wassail and candy canes and singing songs about reindeer and seeing that magic in her eyes.

The past couple of months I've been dealing with some pretty significant anxiety. Until recently, I only had a short bout of anxiety during my pregnancy that I was able to manage and deal with pretty quickly. But this time, I've needed a little more help than usual. Okay, let's get real -- I've been outright crazy. But Oby has been so supportive. He's also my anchor, you know. He loves and accepts me and helps me however he can. He's pretty darn amazing, and if truth be told, I don't deserve him. He and Chloe love me so unconditionally, I can only hope to give that type of love back to them and live to deserve their adoration.

When all the world is spinning round
like a red balloon way up in the clouds

And my feet will not stay on the ground,
you anchor me back down.

I am nearly world renowned
as a restless soul who always skips town
But I look for you to come around
and anchor me back down.

There are those who think I am strange,
they would box me up and tell me to change
But you hold me close and softly say
that you wouldn't have me any other way.

When people pin me as a clown
you behave as though I'm wearing a crown
When I'm lost I feel so very found
when you anchor me back down.

There are those who think I am strange,
they would box me up and tell me to change
But you hold me close and softly say
that you wouldn't have me any other way.

When all the world is spinning round
like a red balloon way up in the clouds
And my feet will not stay on the ground
You anchor me back down.

So to Chloe and Oby, thank you for keeping me from spinning out of control, for anchoring me and helping me slow down and simply remember the true meaning of Christmas.... That a baby was born to show us the path of ~love~ and that because of his birth, life, death & resurrection, we will all one day be delivered from the sorrows, sicknesses, pain and frustration that come our way.

Christmastime Favorites

Chloe loves the tree.... the lights, the ornaments, all the presents wrapped underneath. We sit and look at it while we read Christmas stories and sing Christmas songs!

Chloe also really likes the little tree in her bedroom because she knows it's HERS. Every morning when she wakes up, she first wants to give Teddy a kiss, then she wants to see her Christmas tree. What a funny girl.

Izzy and Chloe are such sweet cousins and being with her is one of Chloe's Christmastime favorites for sure. It is so funny because every year, Izzy and Chloe always coordinate their outfits for the family Christmas party, even though we don't plan it. It's pretty amazing, actually! This year, they had identical hair bows, red shirts, denim skirts & tights. What special little friends they are!

Santa is another one of her favorites. She loves him, but is not so crazy about sitting on his lap, although, even though she was scared out of her mind, she still managed to give him a quick kiss. So sweet.

She much preferred Santa while she was in Dad or Mom's arms. Then she was smiling, blowing him kisses & giving him five!

Christmas presents is another favorite. Although, if truth be told, she'd be just as happy with an empty box... it's ripping that paper that really makes her smile!

Being all together with her cousins is another favorite thing. She loves them and they love her so much. It is so special and I hope that never changes!

I am SO happy to report that Chloe appears to be on the mend. Her sneezing, coughing, fevering days are coming to a close and we are so grateful (and a bit shocked!) that Oby or I didn't catch the bug. We're still keeping our fingers crossed, but it seems we're going to have a happy, healthy holiday after all! Yay!

A Little Catch Up

I am SO behind on life. Chloe has been SO sick ever since we got home from vacation. Actually, she was pretty darn sick on vacation as well, but with only one trip to the ER, one shot and one diagnosis of Croup, we actually managed okay. Unfortunately, though, since we got home, she didn't continue to get better, but progressively got worse. We finally figured out it was some digestion issues and influenza B. Poor little thing. She's been on Tamiflu for a day now and already making a comeback. As I type, she's playing with a punch ball in mismatched PJ's while she laughs, kicks, squeals and punches. I'm just crossing our fingers she continues to improve and is all better in time for all the Christmas festivities and that Oby or I don't get it as well. I'm so grateful my work has been understanding and allowed me to stay home with her. We don't want to have anyone else watch her because she's highly contagious.

Anywho. I finally got a little sleep last night and had time/energy to put up these pictures from our visit to Oby's sister's family in Vegas on our drive home from Cali. We had such a fun time visiting with them! I'm definitely going to have to think of every reason I can for a visit to Vegas in the next couple of years while they're there. And really.... seeing them is reason enough!

It was so fun seeing sweet baby Madison. We just haven't got to see her enough since she was born and of course she has changed and grown so much each time we do get to see her. She's such a good baby and has the sweetest little smile, though I never quite caught it on camera.





Chloe loves babies. I think they speak her sacred language, it's pretty darn special watching her interact with all babies. But of course pictures don't even begin to capture just how special it is.


And Mr. Zeke. Oh how I love him! He calls me Aunt Teera and loves to show me all his toys. Plus he's so darn cute with Chloe.



They watched Mickey Christmas movies and Polar Express together. He sang her this song from Polar Express and words wouldn't even begin to explain how sweet it was.




I feel so blessed to have such amazing families and such a special bond with each of them. It really is a wonderful life. :)

Dreams Come True

We had another fantastic week in Cali! Chloe LOVES being a California girl!!!

This week, my parents and my brother's family met up with us for good times in Cali! Since the weather at our homes in Utah and Montana is winter-y cold, we decided to start our getaway by soaking up the California sun the best way we knew how -- swimming in the pool!

Even though we would have had fun swimming and lounging around all week, there were a couple little girls who were DYING to meet Cinderella! Izzy & Aspen ADORE Cinderella!

But I was so nervous because we didn't see Cinderella during our 5-day Disney visit last week, so I was afraid we wouldn't see her this week and it would have broken the girls' hearts. I tried convincing them that seeing Cinderella's castle was just as exciting!

But cute little Aspen kept telling me she was going to see Cinderella. This little had a dream and she wished and believed and....

That's right, folks! During the last 5 minutes of Cinderella's shift, we ran into her and she was just as excited to meet the girls! I think their mom Katrina and I were squealing louder than the girls! We were SO thrilled they got their wish to meet the elusive princess!

When Aspen taught me that dreams really could come true, I realized how many dreams were coming true just on this vacation!

It's always been my mom's dream to be surrounded by grandchildren. My brother and I both got married a little older than she'd hoped, but alas, here she is with all grandchildren around who adore her!!!

And a dream of mine came true this week. My family was together. Not just voluntarily agreeing to be in close proximity with one another without fighting, but actually choosing to be together and enjoying it! There was a serious falling out a few years ago surrounding a divorce and custody battle. Feelings were hurt, angry words were said. It was SO hard and I truly believed that I would never have a true sense of family again. I only had one brother, so if he and my parents weren't on speaking terms ever again, then I thought my idea of "family" was ruined.

Somehow, wounds have been mended, hearts have been softened, bridges have been built, and here we are. Together and happy. A true miracle. These photos of a happy family are a dream come true for me.

Thank you, Mom & Dad, for a wonderful vacation filled with good memories and good laughs!!!

Grand Getaway

We are in the midst of a splendid vacation.... sort of a trifecta of three Chevy Chase vacation movies rolled into one: Vacation, Vegas Vacation & Christmas Vacation! A road trip with a stop in Vegas on our way to Wally World, or in our case, Disneyland!!!

Here we are watching the dancing water in Vegas. Chloe thought it was fantastic! She was mesmerized, then kept giving us kisses. She just LOVED it!!!

Oby, Chloe & Tara at the Bellagio

It was unseasonably cold the night we were in Vegas so we had to bundle the girls up! They looked so cute!!!

Izzy & Chloe keepin' warm on the strip

Then we made it to our destination. They claim it's the happiest place on earth and I'd say they're right, but especially at Christmastime! It's decorated so cute, Christmas music is playing in the streets.... This was my first time at Disneyland during Christmas and I have to say -- it's definitely my favorite time to come!

Our little family at Disneyland

The Bennett cousins had so much fun just being together, it was just a bonus to get to ride some fun rides too!!!

Tonio, Will, PJ, Izzy, Chloe & Henry in Bug Land

The kids at playing in Pooh's honey pots :)

The big kids had fun too!!!!

Mike, Oby, Aisha, Jamie, Taylor & Pete at Tower of Terror

More than anything, we all just had fun being together!

The crew in front of the castle

"Monkeys" is right!!!

The Bennett bugs ;)

Oby, Nana, Papa, Will & Chloe on the monorail

Chloe met lots of fun friends....

Izzy & Chloe meeting Minnie in their Minnie shirts

Izzy & Chloe meeting Sleeping Beauty

Pluto, Minnie, & Goofy came over to meet Chloe!
She was terrified, but I felt honored!

Chloe was a little scared to meet most of the characters -- okay, she was utterly freaked out to meet them. I left out the pictures of Chloe screaming bloody murder at Mr. Incredible, Woody, Buzz, etc, etc.

BUT she was THRILLED to meet Meeska Mooska Mickey Mouse! She was blowing him big kisses before she even got to meet him. Then when she did get to meet him, she was just smiling, laughing and happy as she could be! It was so adorable. The pictures do not do it justice to show how excited she was! Pluto scared her, so he stayed in the background, but snuck in the back for fun :)

She gave Mickey five (or is it 4 with him???) and it was SO heart-warming. I was teary-eyed for quite awhile afterward because it was so fun watching Chloe experience normal childhood excitement and interaction.

Chloe giving Mickey "five"

I tried taking Chloe on as many rides as possible. I was a little hesitant to take her on the ferris wheel with swinging gondolas, afraid it might scare her, but we decided to give it a whirl.

Chloe & Oby on the pier in California Adventure

I was SO glad we took her -- it ended up being her favorite ride! She laughed and kicked and squealed the ENTIRE time!!! The swinging made me nauseous, but I didn't care and took her on it numerous times just to watch her light up. :)

Chloe in heaven on the ferris wheel

One day we got the kids' faces painted. They all looked so dang cute!

William as a pirate, Izzy as a princess, Henry with a flaming baseball, Chloe with a sparkly flower & PJ with tribal war paint

Cute Sparkly Chloe

When they were done painting Izzy's face, she said to her mom, "Don't I look wonderful?!?" Then she stood in front of the mirror and said, "I am a princess. I am a princess." Soooo cute!!!

Izzy's mirror moment

Our two little princesses

All in all, it was a magical week for our little family. We have had so much fun together and truly enjoyed making some pretty special memories....

Oby, Chloe & Tara watching the parade

And to think, we've still got one week of fun and memories ahead of us with my side of the family! Chloe is one lucky little girl!!!

Chloe is all smiles at Lego Land

TTFN!!!