Pages

9.26.2010

So Much More

Have I ever told you about the hiatus I took from life when we first found out Chloe had brain damage? Of course I haven't. I don't even think I've told my husband about what went on during those monumental days, so why would I share it on a public blog for all to read? Oh well, here I go....

You've read the story. We found out in the ER that Chloe had brain damage and many tests would follow. I was working full-time back then (wow, life really does come full circle, eh?) so I immediately called in "sick." I told them my leave was indefinite, so I filed for FMLA and planned on at least taking two weeks so I had time to get to all the appointments that suddenly filled my calendar.

Time. I suddenly had time that I wasn't used to. Time to take in Chloe's goodness (hooray). Time to research the internet (oye). My search of the internet was so bittersweet. I wanted to understand and be informed about what was wrong with my baby and what could be wrong. I wanted to be prepared with questions so I could get answers. But all the information that kept coming up was doom and gloom about the prognosis of a child with the type of damage in Chloe's brain. It was good to armor myself with knowledge, but it was also very discouraging. So when I got feeling too depressed, I would take a break from all the medical websites and search uplifting/inspiring quotes. One stood out to me in particular:


Courage. That was what I needed. I knew it and I prayed for it because courage wasn't going to come easily to ME. My initial reaction was to think of all Chloe would miss out on and our family would miss out on because of the type of diagnosis I knew was forthcoming. Yet, when I read this quote, something inside of me whispered, 'If you have courage with Chloe's diagnosis, you won't miss out on anything; in fact, your life will be filled with so much more than you can now imagine.' Now, I have quite an imagination, so to think that there could be more in store for us than what I could dream possible..... Wow. And so this became my own personal motto as I soaked it all in.

When Chloe was born and I instinctively believed something to be wrong, that was hard. But to see the actual brain CT scan and know for sure that the road ahead was going to be filled with question marks and difficulties, wow. To read things online about short life spans, children who don't have a personality or smile, children who don't walk or talk.... I just wanted to curl my knees up to my chest and lay in the fetal position.

That's not what I did, though. I prayed for courage. Then I acted. It wasn't easy. It still isn't easy, but I pray, then I go and somehow the courage comes.

I first needed courage to face the doctors, to get answers, to start therapies, to allow Chloe to have tests done. Then it took courage to start a blog and start talking about things that were hard to talk about -- our unexpected life and all that went with it -- the good, the bad, and everything in between.

Then something occurred to me. I was sure others had probably been through something similar as what I went through when I first knew something was wrong with my daughter and started researching the internet. All those discouraging sites and cold, factual information about what life is like with a child who has special needs. And I realized I could do something about it. I could create a site where people who actually lived with a special child could share the positive and inspirational stuff, not just the discouraging stuff. The name came to me almost instantly, kidz -- like most kids, but just a little bit unique!

The thought overwhelmed me. This would take so much courage, more than I thought I had. I was scared to reach out to others and ask them to read my blog and participate in this concept. Believe it or not, shyness is my natural instinct, but with courage, I've learned to reach out. So I started searching blogs, trying to find all my special needs friends. There were more than I ever could have imagined and they gave me more than I knew was possible -- so much more! The more I searched the more I found that there were many amazing people, from all walks of life, living a life very similar to mine. It was comforting. Until then, I thought I was so alone and isolated. But to discover all these incredible people and their incredible stories and perspectives and never-give-up attitudes. Wow. I was so grateful that courage had led me down this path.

But then I thought that there were all these blogs out there about people with children who have special needs.... there didn't need to be a kidz blog. So I put it out of my mind (or tried to, anyway). But something kept nagging at me. It would not leave me alone. The kidz blog had to be.

And so I started it. It started small. It's been through ebbs and flows of popularity, getting many hits a day to only a handful. Initially, I was obsessive about it and it was top priority in my life, second only to Chloe and Oby. But then when I've been busy with things, I've put it on the back burner and even considered deleting the blog altogether a few times. But still, something always nags at me to keep going with it. To connect with people. To be courageous and keep reaching out. And every time I take a courageous step forward with the kidz blog, I get so much more than I was ever looking for.

The friendships I have made because of this blog truly defy description. I have been spiritually uplifted, my heart touched and my soul healed on more occasions than I could name. So often it seems a person shares a post on their blog that was written just for me in that moment and it gets me through. I initially thought I would start the kidz blog to do something good, but I never understood that it would give something so positive to me. I thought I could help other people, but they have helped me. It's been incredible.

Turns out the quote is right. Having courage truly has caused our lives to expand and has brought more blessings and joy than I could have imagined.

Which brings me to the actual point of this post (wow, TMI is NO exaggeration around here!)....

I'd like you to meet the new 'Kidz Krew.' They are some of the elect friends I have made on this journey. Their stories, their beautiful children, their courageous spirits, their uplifting attitudes - it is more than I could ask to just look at their blogs and read about them. But to know them and call them my friends and count on them to help me with a project I started, it's more than I could ask for -- so much more!

Go here to meet them. You will not be disappointed!

9.25.2010

Unexpected Outing

"- great accessible boardwalk into the Preserve!"
"- four story glass observation tower with elevator!"
"- accessible trail along border of Preserve!"


That's what the website said about the wheelchair-accessible hike they recommended that isn't far from our house. (Okay, they didn't have the exclamation points, I added those for dramatic effect.) So when we had all day today without other commitments, we jumped at the chance to check out this allegedly awesome hike! Okay, it actually isn't very close at all to our house. It took over an hour to get there, but we figured it would be worth it for our family to finally get to go on an incredible hike!

Then we got there to find that the "boardwalk into the preserve!" was 25 feet in length, if that. And the "accessible trail along the border" was also the sidewalk along a street of shops. No lie! We were laughing so hard that anyone had tried to class this place under the "hike" category. We were thinking of all the places that could be put on the "accessible hike" website if this met the standard..... malls, parking lots and office buildings were mentioned, just to name a few. We made the most of it, though, and once we got over the fact that it wasn't going to give us the fantastic hiking experience we were longing for, we realized that it actually is a pretty cool place....


The observation tower had views of Olympic venues, gorgeous mountains and a meadow of some pretty beautiful flowers and birds. Plus there was a perfect breeze, so Chloe loved it!....


Inside was some amazing artwork....


We took the scenic route home through East Canyon. The leaves are already starting to change and it was just lovely!....



And so the life lesson continues. Things don't always turn out how you expect them to, but it's usually a blessing in disguise.

9.19.2010

Life. Elevated.




The first time I saw the new Utah tourist slogan on one of the 'Welcome to Utah' signs -- Life Elevated -- I thought it seemed like such a conceited thing.

But, ya know what, I love this state. Yes, it does come with some crazy quirks from some very conservative folk who don't know how to have a light-hearted laugh. Like the people who insisted these hilarious commercials be taken off TV because they are "too suggestive"....





But it is a beautiful place, and I truly can't imagine living anywhere else! Case and point: pictures from our scenic drives the last two weekends. (Keep in mind, I'm no photographer and have one of the lamest cameras to come out of the 21st century)....

Today: view from the top of Alpine, Utah


Last Sunday: View from the top of Farmington Canyon
(where we almost died, by the way,
holy narrow roads and steep drop-offs!)

I found this pic on Google Earth just to show you how truly narrow and freaky the Farmington Canyon road is....


I don't think the picture actually does it justice, I thought surely we would die.... But in the midst of clutching the dashboard for safety and telling Chloe to hold on, especially when we were passing cars so we had to scootch to the very edge of the narrow road with zillion-foot drop-offs, I would still take moments to pause and note how beautiful it was up there. And that I was glad we were seeing it this one time because it would be the ONLY time I would go on that road! Yikes!!!

And just in case you're wondering, no this is not a promotional ad from the Utah Tourism Committee. Just me rambling about how much I love my HOME.

9.13.2010

My New Everyday

Today was the first official day working at my new job. For a few months, I've been working part-time at a party store, Zurchers. It was a lot of fun and I met some AMAZING people working there. But now that Chloe is in school, I'm able to work a more routine day job so I can have evenings with my family! Now I'm doing something that relates more to my education in Health Administration, and I think I'm going to love it! A company that manages different medical clinics all over the Salt Lake valley is switching from paper files to a paperless system, and I'll be doing some training and data entry of medical records. That might sound insanely boring to most people, but it's kinda my thing! So far my co-workers and the staff I'll initially be working with have been above and beyond nice and fun, so I'm really excited for this new stage in my life!


9.09.2010

Another Big Day!

Chloe's 2nd day of preschool went perfectly! This morning when I was getting her ready, I asked if she was excited to go to school again and she just smiled, squealed and kicked in delight. She got a little freaked out for about 5 seconds on the bus lift, but once she was in, I went to check on her and she was already doing fine, smiling and giving the bus aide kisses. She had a super fun day at school and squealed and giggled during the entire bus ride home. I think this girl is going to LOVE school! Yay!!!....



This evening while I worked almost my last night shift, Chloe went with Daddy and Nana to the state fair. It's starting to feel like fall around here, so they bundled up and went to enjoy the animals and yummy snacks. Chloe loved it!....







9.08.2010

First Day

Today was Chloe's first official day of preschool. My little caterpillar is shedding her cocoon and learning to fly....



Many of my feelings, thoughts and emotions about this BIG event in our lives are best summed up in the lyrics of the song When You Come Back Down by Nickel Creek. (playing)



You got to leave me now, you got to go alone
You got to chase a dream, one that's all your own
Before it slips away
When you're flyin' high, take my heart along
I'll be the harmony to every lonely song
That you learn to play

When you're soarin' through the air....



I'll be your solid ground
Take every chance you dare
I'll still be there
When you come back down
When you come back down

I'll keep lookin' up, awaitin' your return
My greatest fear will be that you will crash and burn
And I won't feel your fire
I'll be the other hand that always holds the line
Connectin' in between your sweet heart and mine
I'm strung out on that wire

And I'll be on the other end, To hear you when you call
Angel, you were born to fly, If you get too high
I'll catch you when you fall
I'll catch you when you fall

[Bridge:]
Your memory's the sunshine every new day brings
I know the sky is calling
Angel, let me help you with your wings

When you're soarin' through the air
I'll be your solid ground
Take every chance you dare

I'll still be there
When you come back down
Take every chance you dare,
I'll still be there....



When you come back down
When you come back down





Let's just say it was a day jam-packed with emotions. We started with a big send-off party at our house. She had balloons for good luck and lots of kisses and hugs from Mom, Grammy & Papa. She was excited to go on the big yellow bus and to use her new back pack (she loves that thing!)....







When the bus pulled up to our house, I thought I would be nervous, but I was so excited for her. I thought she would get scared on the lift, but she actually really liked it!....



I decided to ride with her this first time to let her know the bus is a good place and learn to feel comfortable. I sat by her side and explained that this is the bus whose wheels go round and round, like we've been singing about for all these years! We sang the song a few times while she looked around and took it all in, grinning and laughing every second! Grammy was right behind us to give me a ride home (and I think because she needed to see for herself that Chloe was okay!)....



Chloe rode the bus with two new friends, Noah and Marissa. They were so cute....



Then we got to the school, got off the bus and (whew!) the bus ride was over. That's what I had been most nervous about....



What I didn't realize is that THIS would be the hardest part of the day....



The teachers were now responsible for my little girl. I felt lighter, but I missed the weight. Does that make sense? It was SO hard watching them walk away with my little girl. My non-verbal little girl who depends on me and her dad and her grandparents to figure out what she wants and make her laugh, not these people!

I gave them about 5 minutes to get settled in the room, then I secretly snuck in the hallway and peaked through the door. Chloe was meeting some new friends and being put in a chair in a semi-circle for story time. She was smiling. She was happy. It was okay.

It felt like a zillion years that she was gone. I got my house cleaned, got most of the laundry done, then I still had several hours to kill that I didn't know what to do with.

It was nice.

The welcome home crew consisted of Nana, Grammy and Mommy. Us three crazy blond ladies jumping up and down and blowing horns at a big yellow school bus was probably quite a sight to passers by!....



Chloe was so happy to be home!



She was thirsty and very "talkative." She wanted ME.

It was nice....



I talked to her teacher on the phone. She said Chloe did great in class; she was either happy and smiling or quiet, observant and just taking it all in.

I always wanted my little caterpillar to experience flying and now she has. Enjoy it, little girl!

9.07.2010

Brand New

Today we had a brand new experience. Chloe and I went in our brand new van to her brand new school for her brand new preschool class. It's a brand new experience for us to take her wheelchair with us so easily. We love our brand new van!....



We met her brand new teacher, Miss Meegan....



Chloe loved showing off her brand new back pack to her brand new friends and brand new therapists. She also loved the brand new experience of playing the marimba at the school's playground!....



Tomorrow is the big day when Chloe has more brand new experiences: the bus ride, her first time being in the care of someone outside our family, and her very first official day of school. Then next week I start working at a brand new job. Oh boy!

All these brand new things are making my old heart kind of sad, but mostly excited. I know Chloe is ready to experience all these brand new things, so hopefully she will help me adjust.