Rachel Coleman

For me there was one thing… one thing I really wanted to accomplish just to prove to myself that I was still alive. Sure I was married, I had kids, and I had a company, but I wanted to work toward something for me. Just for me.

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?

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“Excuse me. How old are you?” The woman’s question broke through Lucy’s screams. We had boarded the plane, found our seats and begun doing homework, at Lucy’s request. Luce was in the window seat; I was in the middle, and Leah on the aisle. Aaron was seated a handful of rows behind us in the emergency exit row. Most planes don’t have the legroom for a guy who is 6 foot 5. I have my own complaints, like, my feet don’t reach the floor, my legs swing like a toddler, and by the time we land my knees hurt and my feet are swollen, but that’s nothing compared to flying with your knees smashed against the seat in front of you. (So I hear)

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.”

Ever start writing a blog and just end up boring yourself? I’ve had 2 sitting on my desktop with no compelling reason to complete them. They’re just not good.

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!

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

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.

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

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.

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.

Then it was time to 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.

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.

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.

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.

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.

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.

We toured the factory and of course tried out the samples. My favorite? Horseradish Cheddar.

When the factory closed, we drove to Portland, since we were flying out in the morning.

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?

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.

I’m a California Girl and California Girls don’t go to Disneyland on weekends or holidays. We go to Disneyland on overcast, slight chance of rain days, in the middle of the week.

My family moved from Southern California when I was 11 years old. I am not sure that I ever really became a Utah Girl, but that’s not really the point. Once in Utah, I was struck by my peers’ conversations about Disneyland. “How many times have you been?” They were one-upping each other on the bus. “Four times” or “five times” produced dropped jaws. I kept quiet. I shook my head. Oh, those poor theme-parkless kids. They’d never believe me, even if I could add up all of those trips and produce a number for them.

Now, I have Utah Girls of my own. And I get it. Disneyland is no longer a mid-week, skip school, stay for fireworks and drive home exhausted kind of thing. It is an event. It is a… dare I say it? A long weekend kind of event, now that we live in Utah. My cute girls have no idea of the personal rules I break for them. Taking on Disneyland on a weekend? Sheesh!

Nevertheless, we do these things as parents… we do them for our children.

But… I still have an unfair advantage over the rest of you who are investing hundreds of dollars on a weekend, where your kids had better have fun, they’d better like it, and they’d better behave because it costs a small fortune just to walk through the metal detectors and finally cross the threshold to the Happiest Place on Earth.

Yes, it’s true. I have an unfair Disneyland advantage… I have a child in a wheelchair.

Now, if you can’t hack this conversation, click away. I’m just telling it like it is.

It used to be that a wheelchair, in Disneyland, was akin to a free ticket. Not “free” free, but pretty close to it. This fancy wheelchair used to allow us to walk right up the exits of rides, wait a car or two and then ride away in complete bliss. Especially blissful when you realize how many other folks were left juggling tired children, backpacks, strollers, and $6 sodas for hours on end, often for one short spin on Dumbo.

Well, things have changed a bit at Disneyland. Each time they update a ride, they also manage to bring it up to code. California Adventure, for example is so stinking accessible, we get to wait in their wheelchair-width mazes just like everyone else. Don’t waste your time trying to get an accessibility pass in California Adventure, go to Disneyland for it.

When Lucy and I went to Disneyland, we went with our friends Emily and Millie. You might recognize Millie as the little cherub on the cover of Baby Signing Time.

I was already in California. Emily, Millie and Lucy flew in together and met me there. Lucy and Millie held hands throughout the entire flight!

They arrived and we immediately went to the poolside restaurant.

Lucy ordered jumbo shrimp cocktail, her favorite.

I was performing the following day, so they came along to watch.

Emily spotted Scott Baio, she said that she had always wished he could baby sit her… (“Charles in Charge” reference folks) Lucy, in the background, was unimpressed.

The booth located right behind our Signing Time spot was a company called Cade Christian. Here’s the funny thing. Each year that I have presented at the Baby Celebration Los Angeles, I have drawn a good sized crowd of Signing Time Families. This crowd (Yeah, you guys) stays after and creates a substantial line for over an hour, waiting to take a photo, get an autograph and buy products. And each year some of the neighboring vendors have complained about the big, long line of parents and children standing beside their booths. (I’m not kidding.)

So, this year. I gave the Cade Christian folks a heads-up of what was to come and they said, “Oh we heard about that, so we requested to be right near your booth. They thanked me for bringing so many families to the event. And then they hooked the little girlies up with hats and sent one for Leah as well. Then Em and I bought some for ourselves.

Next stop, In-N-Out, on our way to Anaheim.

We arrived at Disneyland and checked in at City Hall to get our “perma-handi-fastpass” <---- not what it's really called, just what it does. Now, if you have just a regular kid in a wheelchair, maybe a broken bone or something, you don’t get much priority. If you have a child in a wheelchair who might have a difficult time waiting in long lines you get a little upgrade. They gave us the Super-Duper-Upgrade <---- not what it's called, just what it does- when they realized that Emily and I not only had Lucy and her wheels, but that little Millie is deaf.

And we were off! We let Lucy lead the way. It was one of the few times I felt uninvested. If she wanted to ride "Dumbo" 35 times in the next 48 hours, so be it. This was about her. And by the way I stopped counting after we rode "Dumbo" 8 times.

So, here are some things I didn’t know before this Disney trip.

“It’s A Small World” has been updated, and I don’t just mean the inside. The boats are all new and they have a special, wheelchair ready boat! Lucy was the queen of the world. I also stopped counting once we had ridden “Small World” 8 times.

If you have a child with special needs and you need a place to handle toileting, go to the First Aid Station (behind the hand-dipped corndog cart and past the Carnation Baby Care Center) They have cots, where you can lie your child down to change them in a private room with a sink and a toilet. They also have cold drinking water for free. They are cold water pushers. You almost can’t escape without cold water coming with you. This was Mecca! You have no idea how much time I spend scouting inconspicuous locations to do a quick-change for my 9 year old.

In the very accessible California Adventure, the newest ride “Toy Story Midway Mania” has wide lanes, so we got to wait with everyone else, BUT they have one car that will accommodate a wheelchair. We didn’t use it the first time, because they asked if we could transfer. I said, “Yes,” because we can transfer, but seriously that was the worst experience ever! The cars make hard lefts and hard rights with no warning. You are supposed to be shooting, but it doesn’t go so well when you are hanging on to your child who cannot sit independently. It was physically exhausting and our score was terrible! When we unloaded I let the guys running the thing know that “Can you transfer?” was not an adequate pre-requisite. I suggested they ask, “Can your child sit unassisted?” I am sure they were enthralled to hear my quick explanation of trunk control and head control and how Lucy may have just sustained whiplash and how I may have thrown out my back trying to keep her from getting her bell rung on the side of the car.

But… then they offered their fancy-schmancy-wheelchair ready car and that was a blast! Lucy sat in her wheelchair in the car and they strapped her wheels down. To make up for the first ride, they let us go two more times without waiting. But I think that was because it was easier to just let us keep riding than to maneuver that fancy-schmancy thing on and off the track. Lucy could shoot her own gun by bopping a button on top or yanking on a cord. I totally crushed her score though.

The parades were great. Lucy is not of fan of anything in costume, especially bigger than life costumes. She even hates Hopkins at our Signing Time shows… Hopkins!

And of course we got to relive memories of the infamous submarine experience in Mexico, but this time with the promise of Nemo below. And this time I wasn’t worried.

For those who cannot maneuver through the tight spiral staircase, there is another option. There’s a room that shows a movie of what you see under water. We tried both and we all agreed that being in the sub was much more fun.

Lucy really wanted to see Ariel, so we stopped by the restaurant Ariel’s Grotto on the first day. We asked about reservations for dinner the following day and were told by the hostess that reservations were not necessary. But, when we arrived for dinner the following day, all of the seatings were filled! Lucy was bummed. I explained what we were told the day before and today’s hostess said, “Reservations are not necessary, but they are recommended.” If your kiddo is an Ariel fan, don’t make this same mistake. Make a reservation.

The moral of the story is 1 in 1000 kids are born with spina bifida- if you are lucky enough to get one, then you are also lucky enough to park in the front row at Costco, even during the holidays. You also get to ride Dumbo and Small World countless times without waiting!

If ever you get stuck going to Disneyland on a busy holiday weekend, Lucy and I are available for rent.