It was 2003 and the conversation with my husband went like this, “Hey, Aaron. If you buy me an iPod, I’ll run a marathon.” (Silence)
“Are you serious?” he asked.
“Yeah. Why not?” I answered.

Within a matter of days I came home and found a brand new iPod on our bed. He took the bait… and I had something to shoot for, plus I had a promise to fulfill.

I need motivation. I do. I need deadlines, and registration fees, and pressure. I need accountability. I ran a 10K once, but other than that, when I started training for that marathon I had never participated in any other sporting or racing event, by choice, in my entire life. I don’t even have one of those soccer trophies that seem to come with a good American childhood.

As a kid, I hated physical education. I thought it was torturous. Really? Can’t we just skip my turn at bat, or do I have to go through striking out and total humiliation in front of my peers?

In Physical Education at school they had this miserable idea of “treating” us to a different sport each month. (Oh, joy!) So, shortly after discovering I was especially terrible at softball, I was able to discover that I was equally as bad at volleyball. After volleyball, there was basketball, and I was miserable at that too.

Now, may I pause here and ask why anyone thinks it is a good idea to play dodge ball in junior high school? Really! Do we need to huck rubber balls at one another? In case you were wondering the person who always gets picked last for the team, is also the one that gets creamed first in dodge ball. It’s a reciprocation thing. Trust me.

I noticed one girl in my PE class who seemed to sit out every single day. I asked her how she got so lucky. She told me that she had a doctors note… she had ringworm. I wondered how I could get ringworm, too.

Never in my life was I called “sporty” or “athletic.” That was not me.

I got married when I was 21 years old. By the time I was 26, I had Leah and Lucy, and all of the surprises that came with them.

And then… in 2004, with my new iPod strapped to my arm, I ran the Inaugural Salt Lake City, Utah Marathon. My finish time was 5:27:22. Within the first 5 miles, my iPod gave up the ghost, but…

I COMPLETED A MARATHON!

I crossed the finish line and hurried home to shower and get dressed, because I had a presentation to give later that afternoon. I was booked to deliver a presentation to parents who have children with special needs. As I was running the race, I kept thinking, “You’d better hurry up if you want to shower, put on make-up and do your hair before speaking this afternoon!”

After that goal was crossed off my list, I didn’t think much more about racing. I did “the big one.” I knew I could do shorter distances if I felt like it…and I never felt like it. Life went on.

Not too long ago I came across Athleta, a company who makes some pretty fabulous women’s athletic clothing. While shopping on their web site, I read that they sponsored female athletes. I thought, “That is AWESOME! That would be amazing!” I continued to read about their sponsorship and then I heard this little voice saying, “Rachel, that is not you. You have never won a race. You’ve taken a yoga class, but you are no Yogini. You ran a half marathon in April, but you didn’t win it. You weren’t even trying to win. You have a couple of finisher’s medals. You are not an athlete.” So, I did not apply.

I bought their clothes and wore their clothes and since I really do love the stuff, there are photos on my blog of me wearing Athleta. My friends started buying clothes from Athleta too and we would chat and shop and tweet about it. We even race together all “matchy-matchy.”

Then, one day I got an email from someone at Athleta’s corporate office. The email said that they had seen my blog and were inspired by my story. They asked if I would apply to be one of their sponsored athletes!

I applied. But, when I spoke with them on the phone I was sure to reiterate how I had never won a race and how I was a mom, doing my best to be strong enough for Lucy… strong enough to be able to tell Lucy, “Yes” when so many other people, roads, and terrain would tell her “No.”

So…last month I signed an endorsement agreement with Athleta. I am one of their 2010 Sponsored Athletes! Most of the time, when I tell people about it I blush. I really do, because that “not sporty” “not athletic” 15 year-old version of myself is just bracing to get smacked with a rubber ball again. I’m waiting for someone to call my “bluff”, even though I ran two half-marathons last year. Even though I’ve hiked through Yellowstone with Lucy on my back, even though I took Lucy to Disneyland and transferred her countless times from her wheelchair to the rides and back to her wheelchair over three days… even though I had been training four times a week with a trainer to become strong enough for my daily life, training for my daughter Lucy and her wheelchair… even though I am 30 lbs lighter than when I ran 26.2 miles in 2004… even with all of that, there is still that little voice that says, “Rachel, you are not an athlete. You are just a mom.”

They said they felt my story was important to share because most women are like me; they are simply trying to find a way to balance their lives. You know what else I found out? Most women do not have a wall of medals either. They have children. They have jobs. They have circumstances that get in the way, too!

I feel really lucky, you know. Every day, my inspiration to be healthy and strong is looking right at me. She’s been living under the same roof for almost ten years. It just took me a while recognize how strong I could be. It feels so good to be able to see it in myself and know that I did it. I became what Lucy needed me to be.

Every time I lift that slippery 9 year-old out of the tub and wrap her in a towel, I feel like I am winning. I’m winning because there’s no concern in her eyes. She’s not worried that I might drop her or hurt my back, and I’m not worried about those things either. She knows that I am strong enough. I know that I’m strong enough. In those moments I smile.

And now I know – it’s one thing to reach for a goal just for me and no one else, and it’s quite another thing to strive for something on behalf of someone you love.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

And then…

It was 2009 and the conversation with my husband went like this:

“Hey Aaron, if you buy me a road bike, I’ll do a triathlon…”

I don’t care much for statistics- I’ve shared before that one in one thousand children are born profoundly deaf AND one in one thousand children are born with Spina bifida. Aaron and I got one of each… go figure. I am no expert in statistics, but from what I hear the likelihood of getting two – one in one thousands is actually- one in a million. There’s something about that that makes me smile. (Dear stat experts, if it’s not true, don’t burst my bubble… just keep it to yourselves)

I do like to think we have somehow beaten the odds. But, I don’t want to lead you astray either. See, it has not always been pink and rosy. No actually there were years… YEARS and YEARS where when we were asked how we manage it all, the answer was this, “Well, neither one of us wants to do this alone.” (Not super inspiring is it?) Even three years ago, if you had asked how Aaron and I “keep it all together” I would have told you, “Neither one of us wants to do this alone.”

A few years ago, I was sitting outside with Lucy on my lap. It was night and I was pointing out the three constellations that I actually know. As we sat under the stars, Aaron’s shadow was cast along the wall as he walked through our house. “I love that man.” I said.

Lucy quickly responded, “Well you sure don’t act like it.”

I was stunned. My first thought was to start listing all the ways Lucy was entirely wrong. But then I realized, maybe I could learn something here. I mean, Lucy lives with us and I was curious to know what her experience was.

I took a few breaths, then I tried to act a little disinterested, still looking at the stars above, “You think so Lucy?” I said, “Tell me about that.”

“Well. You never hug or kiss him and you never say ‘I love you’ to daddy.”
(Ouch! No, really- OUCH! She was right! That was bad news right there!)

“Hmm. You know what Lu? You’re right. Those are things I am going to work on. Thanks for helping me see that.” (But, still… ouch!)

We came inside the house. Aaron was doing dishes. I put Lucy in her chair at the kitchen table and walked up to Aaron, put my arms around his waist and said, “Hey, I love you.” (Was that surprise I saw in his face? Worse yet, was he shocked?)

“What did I do to deserve that?” He asked… (Oh great, he’s actually suspicious of me!)
And before I could come up with an answer a little voice from the table said, “Good job, mom! That was much better!”

I started thinking about what happened over the previous ten years. What happened? How did I go from falling madly in love with this guy, to having a fairly casual relationship based on a division of responsibilities?
You do the wash. I’ll put it away.
You do the dishes. I’ll cook.
You’re in charge of soccer. I’m in charge of art class.

Our marriage was not about loving each other or even enjoying each other’s company. Nope. For a very, very long time, our marriage was about survival. It was easier to deal with the day to day together than it would be alone. We had our kids and we both loved them very much.

Since I am not raising typical kids, I cannot speak to how it is for those of you who are. What I know is this, once we discovered Leah’s deafness, and then Lucy’s disabilities followed, well, it seemed that Aaron and I were engulfed in a spin-cycle of drama and survival.

With Leah it was assessing and doing our best to assure her “survival” in the education system. Contributing all we could to ensure that she would come out on top, or at least ahead of the very low expectations set for deaf children. See, we had been told to expect her to graduate from high school with a 3rd grade reading level. (Not on my watch!)

And with Lucy, “survival” was quite literal. Starting with our 18-week ultrasound, we did not know if Lucy would survive the pregnancy. Would the hydrocephalus (water on the brain) impede her brain’s growth too much? Then we had fetal surgery at 22 weeks. If Lucy had accidentally been born during the procedure we would have to make THE decision. And then post-op, she was (incorrectly) diagnosed with holoprocencephaly AKA Cyclops disorder. They told us her brain was missing the corpus callosum. We were told that she would not likely survive her birth.

But she did.

And then Lucy was diagnosed with cerebral palsy at nine months. And around that time there was a night where she seemed very lethargic and unresponsive. I rushed her to the ER in the middle of the night and the doctor told us if I had waited until morning, we would have lost her. Her entire system was septic. Her body was poisoning itself.

After that, month after month she had life threatening infections that would require daily shots of antibiotics in her thighs, one shot a day for 10-14 days in a row. I would pull into the hospital parking lot and she would begin whimpering. She wasn’t even a year old.

Aaron and I were ever watchful. We became experts in things no parent imagines. On the frequent ER visits, I would rattle off her medications, past procedures, daily procedures, hospital stays, surgeries and all of her doctor’s names. The nurses and doctors would ask, “Are you a nurse?”
“No” I answered, “I’m a mom.”
“We know you’re her mother, but are you also a nurse?”
“No,” I answered impatiently, “I am not a nurse. I am just a mom.”

But operating at such a high stress level changed the relationship of the “grown-ups” in the house. We were always focused on the girls. Always.
We didn’t even realize it.
If I had been aware of it, I don’t think I would have done anything differently. Would I sacrifice my marriage for my children’s well-being? Seems an odd question, since you could argue that a divorce would also affect their well-being. But, I already know the answer because for years we did just that.

And then one of the little girls I was so focused on, turned the tables and showed me that she was focused on her parents. She had been watching us. Her words, “Well, you sure don’t act like it” stung, but they only stung because I knew that Lucy was right.

We had allowed ourselves to fall into a default relationship in a default life. We were just reacting to the things going on. We were not choosing and creating what we wanted!

That year we sat down and as we planned out our year, we decided it would be: The Year of No More Somedays
And it was! We knocked off our biggest “someday purchase” and bought our pop-up camper, a camper we had talked about buying for 10 years, and we immediately started camping in it.
That year we also shot 13 new Signing Time shows and brought Signing Time to public television.

The next year, we sat down and created: The Year of Fun & Adventure
We went to Ghana, Africa.
I was nominated for an Emmy.
We went to Cancun and had the “strong enough” moment that would change all of our lives.

The next year, (last year), we sat down together and decided it would be: The Year of Health & Fitness
Need I say more? There was SCUBA, Aruba, Disneyland, and Yellowstone, plus two half-marathons!

We haven’t created 2010 yet, but I have some good ideas.

The Year of Yes
The Year of Disappearing Debt
The Year of New Heights & New Experiences
The Year of Miracles & Dreams Coming True

I encourage you to create 2010 for yourself, especially if you’ve never created a year and then lived into it. Create your theme with your family and loved ones. You don’t have to know what you are going to do to fulfill on the theme you pick, just pick a theme that makes you smile. Make up a theme that’s worth getting out of bed for each morning, and then, throughout the year you will start seeing opportunities to fulfill on your theme. I’ll let you know which theme we choose and I’d love to hear about yours!
P.S. Feel free to steal other peoples themes (or any of mine) if you see one that speaks to you.

From Rachel: Happy Birthday Emilie!
I was four years old and she was eight when we decided that we were best friends.

“You’re my best,” she said.

“You’re my best, too.” I answered.

And that’s how it was.

In some ways it was a simple rendition of the reality-TV show Survivor – Emilie and I had an early alliance. We had to, you see; in a family of nine kids, there were ongoing battles with the other siblings, and even though it seemed that it might be easier at times to join forces with the stronger ones, Emilie and I instinctively stuck together.

I was good at flying under the radar. Emilie was not…

(Seriously! Click now!)

The last time I sent out a Christmas card, it was 1996 and it looked like this—

First Christmas

Yes, that is Leah. She’s a week old… well, not any more. She’s actually 13 and that photo just got me thinking that I should probably send out a card JUST so people know we don’t look like that AT ALL.

I am terrible at sending out Christmas cards. The worst part is, I WANT to be good at it. Every year I buy cards. Sometimes they even have the sticky place to put a photo, because I fool myself into believing I might really pull that off too!

Good Intentions

My cousin Jen has it down. Hers is always the first card I receive each year. She must do them while we are all taking our turkey induced nap on Thanksgiving.

Perhaps, I should pride mine in being the LAST card people receive… or as reality would have it, the last card they don’t receive. (sigh) I am not good at the Christmas card thing and I should accept it.

Please don’t suggest I email a card, because really… emailed Christmas cards don’t even count! That’s all I am going to say about that.

This year, I sat down with Aaron and mused at the possibility of writing one of those AWESOME Family Christmas Letters. Now there’s a commitment!! I secretly believe some marriages end over those annual productions. I opened the 2009 calendar to see if I could remember what we actually did this year. GAH! First of all, my calendar is 4 feet wide and 3 feet high. The boxes are crammed full of appointments, flight numbers, and the school holidays are highlighted, so we don’t forget and accidentally drop our children off. I could hardly decipher the information, let alone organize it and make it sound lovely.

Be Very Afraid

I tried to conjure something up from the top of my head but the good was TOO good and the bad TOO bad. Here, I’ll show you. Pictures and all. This is like a Coleman Christmas Letter test-drive.
“Lucy’s rabbit, Snowball, died the week before Christmas. We all cried. Leah found the dead rabbit and brought it into the house as she cried her eyes out.
Lucy: “This really hurts!”
Leah: “Sissie, I am so sorry. I will buy you a new rabbit in the spring with my own money!”
The timing was terrible! I had just told Leah to check on the rabbits, because Aaron and I were leaving for the airport. (Now you know why my babysitters quit! “Bye kids! Oh, by the way, Lucy’s rabbit just died. She’ll probably cry for days. Have fun!”)
I hate seeing my children in pain and not only were they in pain, we had to abandon them right in the middle of it. My great-aunt died the week before, but she was 89, so that’s ok.”
(See! That just came out weird. Let me try something else…)

Lucy and Snowball

Ummm. “We all did a liquid diet with Lucy before her bowel and bladder surgery. Please don’t ever use the words ‘jell-o’ or ‘broth’ in front of us, because we will dry heave… The surgery was Hell went great but it has taken months to figure out how it all… never mind.”
(Note to all- Leave bowel and bladder updates OUT of Christmas cards. P.S. No one wants to see your scars. No one.)

Pretty Good for 5 Hours of Surgery

“Aaron and I went to Aruba twice this year!”
(Enough said. No one wants to hear it how you were all warm and tan and visiting exotic locations. Leave gratuitous bikini shots out of Christmas letters, unless there are screaming children in the shot. If you must comment on the beach vacay, look miserable or REALLY put together. Put children in matching outfits and we will all know they are miserable- especially if they are smiling!)
NOT THIS:

Wish You Were Here

Who Wears a Dress to the Beach

So far, family and vacation segments were terrible. I know! I’ll tell you about work!

“Signing Time has music videos on Nick Jr.!”
(Just sounds like you’re bragging. I could try, “We haven’t been on public TV for a year.” <---But that sounds like whining. How 'bout "I didn't get nominated for an Emmy this year." But really, who did? How many people get nominated for Emmy's? I really blew it by NOT sending out a Christmas card that year.)

SEE!

Do you see my dilemma?

In a perfect world. I would have a stack of photo-perfect Christmas cards ready to go in the mail with shiny Christmas stamps and all! Each card signed by each member of my little family.

But it’s not a perfect world. Is it?
Or... is it? Somewhere along the line I must've decided that sending out Christmas cards equals Having It All Together. <----Which I don't even pretend to do.

There is no perfection. It’s all imperfection, so that must be perfect!

Instead of a card, (because we’ve already been through how you are NOT going to get one) I’m going to let you peek in through our snow frosted windows and see three of my favorite Christmas moments. I may suck at cards, but I can safely say that I’m pretty good at videos.

Lucy’s Christmas Gift
The giant box with red ribbon had been under the tree for a week. Lucy kept eyeing it. She knew her name was on it. But, since she can’t hop down and shake her gifts, she didn’t know it was empty… until I put something in it on Christmas day.

I Can’t Believe You Are Crying!
It took me a little while to explain to Aaron why this gift made me so emotional. It’s one thing to buy gear before leaving for a trip. It’s another thing to buy it when there are no trips on the calendar. It was received as a promise of warm weather and good times to come.

Let’s Go Out With A Song
A few years ago, for Christmas, my dad gave me and my sisters some new arrangements of Christmas songs, with 5 part harmonies. This is the first one.
“Sleigh Ride/Jingle Bells” arranged by Lex de Azevedo
Performed by Rebecca, Rachel, Julie, Emilie, and Carrie

Here’s to 2010!

Love~
Rachel, Aaron, Leah, Lucy, & Jack (the rabbit)

Ransacked Beach

We had come back from a chilly, rainy day at the ransacked beach to find that something was different. The sliding glass doors that open to the hotel room balcony had been taped, not taped shut, but taped with giant asterisks of packing tape.

While you were out we taped your windows

The wind had picked up. It had rained daily. (At least it was consistent) Of course we were hoping for better weather. But, since this was supposed to be a business retreat, maybe it was best that it was cool and windy and pouring rain.

Then there was a knock at the door. FYI- I don’t speak much Spanish. I opened the door and was handed two styrofoam “to-go” containers. “Gracias.” I said. It sounded like a question coming out of my mouth.

“Did you order room service?” I hollered to Aaron. He walked out of the bedroom and Leah followed. I held up the containers. We all sat near Lucy and opened them. They each contained a croissant, a box of orange juice, a bottle of water, an apple, a baggy of frosted flakes, a package of jam, a triangle shaped hash brown and a small danish roll. None of the food was hot. Each was wrapped in plastic-wrap.

My children looked at each other and said. “Ew!” I closed up the boxes and went down the hall to see if Emilie’s family and my dad had received the same. They had. FYI- They both speak Spanish. “They are rations, emergency food supply. The storm is becoming a hurricane.” Em explained.

Emergency Rations

I returned to my room to batten down the hatches, so to speak. Noticing, as I went, that doorways were now blocked by bags of sand. The same bags of sand we had seen earlier on the ransacked beach. “Stay back waves! Stay back!” but the waves didn’t listen. The waves just washed over those sandbags, laughing and mocking as they rolled.

Sandbags in the Doorways

“Why are those inside?” Leah asked, pointing to the patio furniture that had been on the balcony. Two chairs and a small table were now positioned at the foot of her bed. “I guess they brought them in so they don’t blow around and break the windows.” I suggested.

Those Are Supposed To Be Outside

That night the wind HOWLED. The tops of the palm trees danced HORIZONTALLY against the sky. Lightning LIT UP the room in spite of the blackout curtains. Thunder THREATENED to break the sky in two.

Aaron, Leah, Lucy and I all snuggled together in the king sized bed. Leah slept like a rock, nothing wakes her… nothing. Lucy startled at each sound, her legs pulling up to her chest. I tried pinning her legs between mine. It didn’t help much.

Finally we slept. No windows were broken. No cold hash browns were eaten.
The storm passed quite uneventfully.
~~~~~~~~~~~~~~~~~~~~~~~~~~ THE QUIET ~~~~~~~~~~~~~~~~~~~~~~~~
Before arriving in Cancun, Aaron and I had been using “swimming with dolphins” as bait for Lucy to improve her behavior at school. Lucy took the bait… well, at least she took it just enough that we had to keep our side of the deal. We went to the concierge to make the arrangements. Leah and everyone else had been able to swim with dolphins the year that Lucy and I went on the submarine.

The concierge was soon on the phone, scheduling a van to pick us up the following morning. He covered the receiver and said, “I am sorry, I know this is taking a long time, but… well… asking them to pick up a wheelchair… it’s sort of a… it’s a special request. You understand?” I smiled, “Oh, we understand.” And then I added under my breath, ” You might say our whole life is ‘sort of a special request.’”

The following morning, the van picked us up. Lucy and I would swim with dolphins… rain, or shine, or hurricane.

Lucy Pets the Dolphin

Kisses on the Cheek

Shaking Hands

May I Have This Dance

Happy Girls

We were finishing up math, only 2 pages left of a week’s worth of homework. This was our flight home from Cancun and the last chance to wrap it up before she returned to school tomorrow. We did the first problem together. Lucy was doing the math, I was writing in her answers… and then… well, to be completely honest, I have no idea what set her off. “What makes Lucy cry and scream?” <—that my friends is the million dollar question.

Something happened… or maybe nothing happened. Someone coughed? Cleared their throat? Slammed a door? A baby cried? The wind changed? Everything. Nothing. The tirade began. Ear piercing, high pitched, screaming, that went something like this, “I HATE YOU! YOU NEVER HELP ME! YOU’RE STUPID! STUPID! YOU’RE A TERRIBLE MOMMY! YOU NEVER LISTEN TO ME! I HATE Y-OOOOOOOOU! (Repeat, non-stop… for 45 solid minutes)

She started her rant before they closed the airplane door. She continued through the safety announcements and hadn’t let up by the time we were allowed to use electronic devices and were free to move about the cabin. 10,000 feet of screams.

There is nothing I can say to stop her, no threat. No look. No words. My response or reaction just makes it escalate. I put on my sunglasses and my headphones and am surprised at how the music drowns out my daughter’s screams. I pop one headphone out and announce loudly, “I hope you all brought headphones!” What else can I do? Then put the headphone back in place. This infuriates Lucy all the more. She takes it up a notch from ear piercing to shrill. All the while at top of her lungs.

People throughout the plane are shooting hateful glares and glances our way. I can hear their helpful advice, “If that were my child, I would smack her!” Do you know how much self-restraint it takes to keep from throttling her? Do you? I put her in one room and I go in another room and I cry. I don’t know how to break her. In so many ways, she’s already broken. What’s left to take away? “That’s it! No walking for you!”

I’m sure the people on the plane were questioning my parenting skills. Hey, let’s be honest- I question my parenting skills. No one has ever had a “Lucy” before and she didn’t come with a manual. “What to Expect When You’re Expecting” didn’t include anything about fetal surgery for spina bifida. I threw that book away. “What to Expect in the First Year” had nothing about a child who screams for their first 9 months, almost dies in your arms and has sensory issues that cause her to startle and cry like a newborn until age 7. She has managed to knock out the cry now, but the startle still sends her reeling. She’ll tip right over if we cough without warning and with the cold and flu season escalating, there is no safe place for this child. Oh, please don’t exclaim in front of my child, happy- “WOW!” sad- “SHOOT!” or otherwise. You’ll see the startle, then you’ll apologize for it, just drawing more attention to the thing she can’t control. She gets embarrassed and the whole thing snowballs. “Just keep swimming. Just keep swim-ming.”

“How old are you?” The question from the woman in the aisle, leaning in over Leah, surprises Lucy and Lucy shuts her trap and tucks her chin in embarrassment. This must be my guardian angel! I half wonder if Aaron enrolled her in helping me out, sending her from the back (he didn’t). I smile at the woman. Lucy won’t answer. “She’s nine years old!” I draw it out, grinning.

“Nine? You are nine? I was pretty sure that noise was coming from a child who was only two or three years old… you are nine?” Her voice was more stern than angry, but tinged with a tiny bit of compassion… tiny… or maybe she was just tired. “Do you realize you are acting like a two-year-old?” The stranger continued, Lucy still doesn’t answer and doesn’t look up. “There’s an entire group of us in the back of the plane, we are all tired and trying to sleep and you are REALLY disturbing us. The noise is unbearable and the entire plane can hear you. You need to stop this nonsense and be nice to your mother.”

I smiled at the woman. I was really thankful. It takes someone else, someone Lucy doesn’t know. There is nothing I can say to stop her. Besides, she’s heard it all from me a million times before.

The woman returned to her seat. Lucy looked up at me and said, “I’m ready to finish my homework.” We finished both pages and for the remainder of the flight, 3 hours, Lucy was absolutely pleasant.

“Did you send that lady up to save me?” I asked Aaron after we landed in Phoenix. “No! I saw her get up and talk to you guys. What did she say?” I replayed the encounter for Aaron, who, like me, smiled.

We made our way through the terminal. Found our gate and plopped down. Quite some time later, the woman from the plane showed up and sat on the row directly behind us. I didn’t notice, until Aaron said, “I guess you didn’t get enough of us on the plane!” She turned around and looked surprised.

Then she started, earnest, but hushed, so Lucy couldn’t hear her, “I am soooooooo sorry! I shouldn’t have said anything. After I sat down, I saw you guys signing and I realized that maybe the little girl was deaf and then when you got off the plane I saw that you put her in a wheelchair!!! …And I thought, ‘Oh great! I am going to Hell!’- I should have kept my big mouth shut!” I stopped her, “No. No. I was SO glad you said something. I actually thought my husband sent you up to save me! No one ever says anything! They don’t dare say anything! They look at us like they hate us, but they don’t say anything. The flight attendants see us board with the wheelchair, so they don’t even say anything because they KNOW she has disabilities.”

Once, a flight attendant actually got into it with a passenger who had turned around and “SHHHHHushed” Lucy! That flight attendant started hollering, “That child has disabilities, you don’t treat her that way!” and the passenger shot right back, “I’ve worked with kids with disabilities and THAT child knows better!” And mostly, I just wished a hole would open in the plane and drop me out somewhere far below the two strangers arguing over my child’s deplorable behavior…

“But you were right,” I continued, “there is no reason for Lucy to act that way, disability or not, it doesn’t work. Clearly it doesn’t work for anyone on the plane!”

I gave her the short version of The Traveling Coleman Family Circus- Leah is deaf. Lucy has spina bifida and cerebral palsy. We all sign. Lucy seems to have some sensory issues, caused by cerebral palsy; her nervous system seems underdeveloped in some ways, even though she has a completely capable and brilliant mind. No, there has not been an official diagnosis other than CP and spina bifida, no, I don’t know if there is medication that could reduce Lucy’s sensitivities. And thank you again for having the guts to say something!

We boarded the next flight, heading home to Salt Lake City. This time I was flying with a plan. Aaron was far behind me getting Lucy out of her wheelchair and gate checking it. I knew Lucy was safely out of earshot, “Excuse me…” I said to the woman just ahead of me in the aisle, “Hi there, ummm… this may sound odd, but I was wondering if you’d do me a favor… If my child starts acting like a turd, would you please come over and sternly ask her to cut it out? Thanks.”

I giggled when I opened my email and received a “Happy Birthday” message from Signing Time, because when I opened that email, I got to see me… singing, and signing to… me. Trust me, it’s a little surreal sometimes.

This year I am 35 whopping years old. Can I get a “whoop whoop!”
I just got back from Washington D.C. and honestly have been traveling so much that I forgot it was my birthday. Leah was in D.C. with me and asked, “Mom, are you excited for the day after tomorrow?” I had no idea what she meant, “Am I excited for Friday? Sure! Who doesn’t love the weekend?”

As far as I know, I currently have no birthday plans, other than unpacking my bags and doing some laundry (hint, hint Aaron) So, I am having a sale! (It’s easier than having a party… very little clean up with a sale) And you my friend, you are invited!

The details came out in the Signing Time Newsletter. (Join it if you haven’t already)

I can’t remember a time we’ve had a sale this big, but then again I have never been this old… so who knows!

The coupon code is in the message below. Feel free to share the video with others, so they can celebrate too. And remember, when October 9th is over… so is the sale!

Visit the Signing Time Store to use the coupon.

La-di-da-di Happy Birthday, Happy Birthday All Day Long!

So, instead I am going to invite you to check out Oregon with me!

I flew in to Portland on Thursday night. Lindsey (remember her?) was flying in a few hours later, since she had a college class that she just couldn’t miss. I never fly in on the last flight of the day, because if it is cancelled, or I miss it, well, there is no Signing Time event the next day. So, I took and earlier flight and Linds took the last flight.

It’s been awhile since I traveled with Lindsey. Luckily, Lindsey was able to come along, since it is just too early to leave Lucy with a sitter. Lucy was only 2 weeks post-op.

Lucy’s surgeries went really well!

Lucy Wakes Up to a Garden of Balloons

She had three procedures and it took 6 hours. She is very resilient.

Feeling Better

For this Oregon trip, Aaron stayed home with Leah and Lucy.

While waiting for Lindsey’s flight to arrive, I knew I would have about 4 hours to kill… so I picked up a ticket to see The Killers, who were playing that very night. (Yay for me!) No, I am not afraid of going to concerts or movies by myself.

The show was amazing. It is my goal to get Baby Signing Time to the lead singer, Brandon Flowers, he has a newborn and a toddler and I would love for them to sign with me… since my family sings along with him.

After the show, I picked up Lindsey and we dove 80 miles to Cannon Beach. We checked in and hit the sack. The bummer with driving in the middle of the night is you miss the beauty.

In the morning we met up with Debbie, whose organization brought us out there, and we had brunch at a place called Wanda’s. This was the first of many AMAZING meals we would have on this trip. I had oatmeal… oatmeal… and it knocked my socks off. I mean really, how often can you say you’ve had an amazing bowl of oatmeal? … Me neither! Though, you are more likely thinking, “You ordered oatmeal? Who orders oatmeal?” I do. Okay? I order oatmeal.

Next we visited Nehalem Elementary School. I shared a sign language story time with the Life Skills Class. Then did a Signing Time Assembly for the entire school.

It was still fairly early in the day, so Linds and I drove back to our inn and threw on our swimsuits (silly California girl!) and hopped back into our PT Cruiser and started driving the coast. We pulled over to get our toes in the sand.

Walking The Beach

Yes, I brought longsleeves

Picking up Sand Dollars

We always ask the locals for dinner recommendations and this time we were pointed toward “The best seafood!” a restaurant called Pirate’s Cove.

So Good!

Need I say more?

We drove back to the inn, stopping to pick wild blackberries and raspberries that seemed to run rampant everywhere we looked.

Blackberries Make Us Happy

The following morning was the Buddy Walk at the Beach, in Seaside. The weather was perfect. The walk was just the right length.

I got to meet Lucy’s personal Fan Club, little Dru.

Dru Loves Lucy Coleman

Then it was time to walk.

Walking in the Buddy Walk

We all gathered for a photo on the stairs that lead to the beach. It felt like a “Where’s Waldo” scene, since most everyone had their Buddy Walk shirts on and I was wearing my signature orange.

Where's Waldo?

Lucy’s buddy, Josiah and his family were there. You may have seen Josiah in “The Great Outdoors” exploring on his crutches or smiling next to Lucy. Josiah and Lucy go WAY back. Josiah’s mom, Gina, was the 77th fetal surgery for spina bifida patient and Lucy and I were the 82nd patients. While on bed rest we got to know each other and kept tabs on the progress of these special kids.

It's Always Fun to See Friends

We all made our way to the Convention Center where my Signing Time performance would be. Before singing Caterpillar Dreams, I introduced Josiah to everyone. It was sweet to see him on the screen behind me and to see how much he has grown since we filmed those scenes.

When most everyone had left, I noticed some bumper boats for rent nearby. Lindsey and I put everything in the car and then ran down to rent bumper boats.

Bring it!

There was an option to rent water guns as well. At first we loved the idea, but on second thought… that water looked uncomfortably brown.

The Eye of The Tiger

We packed up and decided to drive some more. The landscape was eerily familiar and we realized that this must be where they filmed the movie Goonies.

Tell Me That Rock is Not From Goonies

A google search later that evening confirmed that hunch. For what it’s worth Kindergarten Cop was also filmed in that area.

After that we went to the Tillamook Cheese Factory for grilled cheese sandwiches and ice cream cones.

Tillamook Cheese Factory

Don't Forget the Extra Cheese!

I love Oregon! I know, I have said it before, but I do. That place just speaks to my soul. The greens are so green! The landscape transitions so abrupt. Who puts a beach right next to a forest?

The Coast is Calling

I have loved traveling for the Signing Time events in Salem and Klamath last year and when I was 19, my girl friend, Jessica and I had hopped in my VW Bus and drove to Eugene on a whim.

I am trying to figure out the best way to get more of Oregon? Should we take a week or two and drive the coast this summer? Camp? Camper? Bed & Breakfast? Should we move to the coast for a month? What is the best way to get more Oregon? Should I sign up for the STP 2010 (Seattle to Portland Bike Race).

I don’t know how, and I don’t know when, and even worse I don’t know why! Something is pulling me toward Oregon.

Still Camping

When we arrived in Mammoth, we saw elk, everywhere.

Just Lounging Around

We hiked the terraces of Mammoth Hot Springs.

Just Keep Hiking

The terraces look like ice and snow. Very Superman, don’t you think?

Fortress of Solitude

We decorated our pancakes.

Pancakes Made with Feeling

Old Faithful

The trip was a complete success! We packed up on Saturday morning to head home… head home for surgery.

Lucy would be admitted on Monday in preparation for surgery on Tuesday. We had it all planned out, remember?

Maybe it was scheduled too tightly. Lucy had to start a clear liquid diet the day we drove home from Yellowstone. Not so yummy. Chicken broth, sprite, juices, Jell-o and that’s about it. She would have a second day of clear liquids and then she would go into the hospital. Well, that didn’t go so well. She got sick. Really sick. I would prefer any one of us get sick, anyone other than Lucy.

Late Saturday night, I was asleep, and I heard Lucy cough. I sat up in bed, “Luce, you ok?” And then I heard it “RAAAAAAAAAAAAAH!”
This is not good. Lucy can’t roll over. She can’t sit up. She could choke… aspirate… When Lucy is sick, we are all on high alert, until the threat has passed.

I sprung from bed (truly I sprung, you should have seen it!) I hollered, “AARON!” as I ran. Then he sprung, because you spring when your wife screams your name as she tears down the hallway to your child’s room.

Then we spent the following 24 hours either right by Lucy’s side, or not far from it. It wasn’t pretty. Trust me. (This is the part where you are SO glad that blogs are not scratch and sniff.) Lucy, with the flu is a 4 man job. Someone to hold the bowl. Someone to hold her up. Someone to hold her head up as her little body is wracked. She burst blood vessels in her eyes, from retching so violently.

Poor Lucy. Was it the liquid diet? Stress over the upcoming surgery? Maybe she was just sick with the flu. I know the clear liquid diet was on her mind, because after she would hurl, she would look up at me, smile and announce, “Chicken Sliders! From The Cheesecake Factory!” She was having me make a list of things she wanted to eat once she had recovered from surgery. It was kind of pitiful, really. “RAAAAAAAAAH!…. Peanut Butter Cup Shake!”

She was so tiny, weak and pale… or seemed to be, until she hollered out her next dream food. “Cherry Cheesecake Ice Cream!”

Monday morning I called the hospital to let them know she had been sick. They asked me to bring her in for an evaluation to determine whether or not surgery should be canceled. We packed like we were going in for surgery and a week of recovery.

Very Sick Girl

I told the doctor everything that had happened in the past 48 hours. Then he announced that it would be best to wait and reschedule the surgery.

Lucy had just completed 48 hours of eating nothing but clear liquids and ralphing them up again… and we would have to do it all over again in a few weeks, hopefully without the ralphing.

The doctor left the room. Lucy and I were both tired. She looked at me and said sadly, “But… mom, I’m ready. I’m ready to have surgery.” (Proof that reverse psychology actually works)

We hugged, and then, two very exhausted girls had a little cry.

Then we got our things and went home.

But wait, it can’t end there! That would never do!
(Kei, put away your Kleenex!!!)
As soon as Lucy felt well enough to eat Chicken Sliders from The Cheesecake Factory, which was within a few short hours of canceling her surgery, I booked flights to San Diego!

Early Wednesday morning Lucy, her cousin Clara, and I flew to California and went straight to Sea World for three days!

We Love California

Lucy and Clara giggled non-stop… for three days! On the flight home, Lucy smiled and said, “Hey mom! That was WAY better than surgery!” Once again, Lucy is right.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
P.S. Lucy will start her liquid diet this Saturday. Aaron, Leah and I will join her on the liquid diet for support. The plan is that Lucy will be admitted to the hospital this Monday…

Plans are overrated.

We might just no-show and go to Sea World again!

Ideally.

If there is anyone who should have learned to expect the unexpected, it’s me, but sometimes I just forget that part.

This is where our story begins.

I had never been to Yellowstone, so I dug through their website looking for information. Their website was not very helpful, there was simply too much information and I had no idea where to start. (so I will link you to it!!)

Yellowstone was… in a word, remarkable. We must’ve accidentally purchased the deluxe package because we saw it all. It was amazing!

Considering that I called a reservation center and was assigned a random campsite, we somehow ended up with an amazing site!

Just what we ordered

When I retire, I think I am going to be a Campground Host. Aaron is the one with the Parks, Recreation and Tourism degree to make it happen. I was going to be a nurse, because I wanted to help people, but I dropped out of college after my first year to become a musician. A musician! How silly is that? How many college kids bail on their degree to become musicians… pipe dreams I tell ya!

Back to Yellowstone and retiring. When I do retire, you can find me at Bridge Bay Campground, Loop H. I will have potted plants, an herb garden and a welcome mat in front of my RV. I will have a hammock hung between two lodgepole pines. Look for me in a high-end camping chair, the kind with two drink holders, a sunshade and a footrest. Living large!

Leah and Lucy are great little campers. I have proof. Don’t they look miserable?

Happy Camper

Playing kung fu games

We also take our food very seriously when camping;) Dutch Oven Meatloaf was our dinner.

I can cook anything in a Dutch oven

Roasting marshmallows takes patience AND focus.

Don't Mess With the Marshmallow

Aaron and I are ambitious hikers. So, on day two we set out for a 6 mile hike.

Clear Lake Trailhead

Such a beautiful trail

We would have seen two lakes and two waterfalls. I say “would have seen” because just 1 mile up the trail there was a sign that said the trail was closed due to “dangerous conditions.” Hmmm.

Okay! It’s time for Choose Your Own Adventure: You are a family of four, hiking in the woods. Your route, which was recommended by a Ranger at an Information Center, is now closed. You…
A. Keep hiking that path.
B. Turn around and hike back a mile. (Wow! A whopping 2 mile hike.)
C. Take another path.
D. Get eaten by a bear (you are in Yellowstone)

We went with option “C” and took another path. I’ll admit we stood there for a while and thought about it though. I realized that if it were just me and Aaron, I would have gone for the closed trail, but then again, I got into a paddleboat in a lagoon of crocodiles in Ghana… so, I bet you’re not surprised.

Yes, we took another path that lead us out of the woods, directly to the road. Then we followed the road to a parking area, and from the parking area to some well marked tourist paths. Boo! Oh well, we tried! Still ambitious, we hiked down Uncle Tom’s Trail, a path that the Ranger said we shouldn’t bother trying with a 50 pound child in a backpack. (Bring it!) It is pretty much a billion stairs down to the bottom of a waterfall. (Truth be told it is over 300 stairs and a descent of 500 feet) Aaron took the pack with Lucy down and back up. I’ve gotta say there were people, carrying nothing on their backs, who were huffing and puffing harder than Aaron. (Go Aaron, go!)

Somewhere Under The Rainbow

Catching His Breath

That's a whole lotta H2O

Then I took Lucy on my back and we “hiked” back to the car.

Self Portrait

2 miles = Smiles

We had lunch and then continued on to the next stop.

Did you know that the center of the Earth smells like hard boiled eggs? Yeah, charming I know! In Yellowstone, there are countless geothermal areas, some spouting water and others just letting off steam, and all of them laced with varying degrees of sulphur. (Fabulous!)

Some are holes of boiling mud.

Boiling Mud Pot

Others are multi-colored fairy pools.

Do You Know The Colors of the Rainbow?

Some look like science projects gone wrong,

Yikes!

and some look like science projects gone right.

Aaron and Lucy at Giant Geyser

Most of them smell bad! I really wish my blog was scratch-n-sniff right now.

I hiked Lucy around the mud pots. Leah thought this stop was torturous. The hot sulphur blasts of steam fogged her glasses and sent her reeling… she likened it to the open sewers in Ghana. Lucy, on the other hand, just hollered, “Pee-yew!” at each stop.

While driving up north to Mammoth Hot Springs, we saw bison.

Stay in the car kids

And we saw a bear!

Roll Up The Windows Kids

We stopped to hike the Tower Falls Trail.

Tower Falls

This time, I carried Lucy down the trail and back up. As we hiked, I could hear Lucy saying something, quietly, to herself. I finally asked her, what she was saying. “I’m just counting your steps.” (That makes two of us)

When we were climbing back up from the waterfall, I stopped to catch my breath and drink some water. As I started back up the steep trail, Lucy could tell I was working hard, she leaned in, over my shoulder and quietly said, “Mom, this is what you are training for.”

Ok, talk about words of encouragement!

Did I tear up a little? Uh, maybe.
Did I pick up my pace? Yeah. I did. Because suddenly, I felt a little less tired.

But you know what, Lucy’s right! This is the event- waterfalls, dirt, trees and steep rocky paths with Lucy on my back. She’s right!

A few minutes later a curious voice asked, “How old is she?” I turned to see a couple in their sixties right behind me. The woman had asked the question. “Oh, she is nine.” I was breathing hard but doing my best to keep my voice steady.

“She’s nine?” the woman asked, surprised. Now I wondered, was she surprised because Lucy looks younger than nine or was she surprised that a 9 year-old was on her mother’s back? She continued, “Well, let me tell you something.” (here it comes) “When my daughter was five she always wanted me to carry her…” (ah, the latter) “and we came up with this game you ought to try.”

I kept smiling. I didn’t want to interrupt, that would be rude, but I already knew how this was going to play out. Somebody was going to feel bad.

She kept talking, “See I would walk ahead and tell her all she needed to do was meet me. Once she met me, it was her turn to walk ahead and I would meet her. You see? Then, before she knew it, she had walked the entire way!” (helps if you can walk)

“That’s really great.” I said, meaning it.

See, I don’t like this. I don’t try to leave people feeling like they shouldn’t have said anything in the first place, but I was pretty sure that in a few minutes, she was going to be kicking herself. I turned, looking back down the steep path and said, “The thing is… this trail isn’t wheelchair friendly… at all. So, if I didn’t carry her, she would just miss out on all of the beauty.” I said it smiling, cheerily, not in snide or rude way, I promise!

“Oh! Oh! I am sorry! She’s in a wheelchair?” (no she’s on my back, but…)

“Yep, she has spina bifida and cerebral palsy.” Again, I state it as a fact, like saying “the sky is blue.” No pity. (Please no pity.)

“Oh! My! I am sorry! So, so sorry!”

Was she apologizing to me or to my daughter? Was she “sorry” that Lucy uses a wheelchair? Or “sorry” for suggesting I force Lucy to walk? It didn’t matter, really. For the past eleven years I have worked on ways to give information about my kids, without adding drama. Additionally I have honed my skills, so that I can take someone’s reaction and diffuse it, and explain it to Lucy or Leah so that they can see it is just someone else’s point of view. It is not the truth. Most people look at Lucy and they can only see what is “missing.” They are blinded by the wheelchair, the disability. They cannot imagine the full and beautiful life Lucy has. The full and beautiful life we have, yes, even with a child in a wheelchair.

I used to want to smack people upside the head when they said ridiculous things, but now I listen to the reaction that goes off in my head… it’s just my synapses firing. I listen to the reaction, my reaction and then… a very calm, collected mommy chooses the words that come out of my mouth. (most of the time)

I just kept smiling and the woman continued, “The poor little thing!” (Please don’t say that in front of my kid.) I quickly cut her off for fear that we might be dazzled with some of my least favorite adjectives like “crippled” and least favorite statements like “she’s bound to a wheelchair.” (Want to see bound? Watch her without the wheelchair)

“Oh, no apology needed.” I said. “Lucy is a very smart and very fun little girl. We’re not going to let dirt and hills stop us from seeing so many beautiful things, are we Lucy.”

The woman continued, “Well, I really can’t imagine doing what you are doing. You are going to be a very, very strong young lady!”

“That’s what I’m working on.”
I smiled.
She smiled.

It was quiet.
We all kept walking.
We came to the parking area.
We completed the trek.
We did it.
And you know what? I don’t even think the woman was kicking herself.

Yes, this is what I’m training for.

She's not heavy. She's my daughter

To be continued…