Rachel Coleman

Only two weeks of summer were left and we had them planned, solid. The Last Hurrah would be 6 days in Yellowstone. See, Lucy was scheduled for surgery. She was scheduled just two days after we would be returning home from our Yellowstone trip. She and I would then spend the final week of summer vacation in the hospital while she recovered. Ideally she would be released from the hospital, just in time for school to start.

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!

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?

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

Roasting marshmallows takes patience AND focus.

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

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!)

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

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.

Others are multi-colored fairy pools.

Some look like science projects gone wrong,

and some look like science projects gone right.

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.

And we saw a bear!

We stopped to hike the Tower Falls Trail.

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.

To be continued…

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.

Remember last summer, I was in Mexico having nightmares about a promise I had made to Lucy.
(If you missed that, read: Strong Enough To Be Your Mom – Part 1)

Anyway, last summer in Mexico I found an advertisement for a glass bottom boat. I thought it would be perfect for Lucy, because she is not a fan of putting her face under water. She has dysarthria<--- which came along as a sidekick to cerebral palsy<--- which came as a sidekick to spina bifida (Thank you very much).
Because of her dysarthria, snorkeling does not work for Lucy. It is tough for her to get her body to either breathe through her mouth or her nose.

I asked Lucy if she would like to see the fish, but do it in a boat and not even get wet! She loved the idea. I called the company to make the reservation. I asked them about wheelchair accessibility there was none. A bus would pick us up and take us to the main location. We would board a speedboat and it would drive us out to a small submarine. Then we would transfer onto the sub go down a tight spiral staircase to our seats below!

No wheelchair. Not for any of it. We would be gone for at least 6 hours.

Could I do it? Could I carry all 40+ pounds of her? Could I carry her as I exited a boat, out in the ocean, and hopped over to a sub?

Was I strong enough to bring her to new experiences? Or because of my lack of physical strength was she literally “bound” to her wheelchair? Was I strong enough to show her the world beyond sidewalks and ramps? The worlds of dirt and gravel and sand and water and beauty? What would she think of me if I failed her? Worse yet… what would I think of myself?

My nightmares the night before included being dropped off with her in the desert, with nowhere to rest, nothing but sand, sand dunes and smooth rocky hills. After hours in the hot sun, moving her from piggy-backing to a side carry, to baby-in-arms hold, I frantically looked for anyone who might have a stroller. Even in the deep sand a stroller would give me a little rest and we could still slowly move forward. I moved her to my back as we bouldered across mountains of rock.
When I woke up I was exhausted, soaked with sweat.

That was a year ago.

I was able to hold her as we stood in line, transferred to the boat, transferred to the sub and back to the boat. We had a great time together and I don’t think my daughter ever knew my fear… my fear that I would let her down. The fear that I might be just one more “No!” in a world full of people, who throughout her life, will simply look at her and tell her, “No.”

Something changed in me that day. I began working out harder at the gym, running faster and farther. I looked for better backpacks to carry her in.

With Lucy as our inspiration, Aaron and I signed up with a personal trainer and started training with him 4 days a week. I felt silly doing it, I didn’t want to tell anyone because it felt so “Hollywood!” (Um, YES! I TOTALLY have a personal TRAIN-ER!)
But I wasn’t going to be stopped by feeling silly or cliché. My reasons were bigger than that. When Jared, the owner of the gym, and Matt, our trainer, asked what our goals were, Aaron and I said, “We definitely need to be able to dead-lift 50 pounds, over and over and over again. Every single day.” I said, “I don’t care if I lose weight, but I need to get stronger. We have to increase our overall strength because we have an 8 year-old in a wheelchair and every day she is growing. We have to keep up with her!”

Jared Trevino, who owns our gym, Fit Forever, offered to come to the house and watch how we lift and transfer Lucy. He watched us load her in and out of her car seat. Then we loaded her wheelchair in and out of our car. Next we lifted her from her wheelchair and sat her on her bed, then moved her back to the wheelchair. Then we transferred her to her feeder chair at the dinner table.

I set her on her back, in the bottom of the tub. I stepped in, straddled her and lifted her out, stepping carefully over the edge, one foot at a time, like I do when she has a bath. (A maneuver that is much easier when she is fully clothed and dry.)

We put her in her small wheelchair and “bumped” her up and down the stairs. We put her in her stander and then pulled her out of it.

Jared then showed us how to do each of those things with correct form, giving us more strength, more control, protecting our lower backs and protecting Lucy. We had been doing it all wrong… but only for the last 9 years.

Our trainer, Matt Williams, says that very few of his clients train as intensely as Aaron and I train. I wonder if many of them have as much at stake as we do. We are Lucy’s legs. We are the wheelchair, when the wheelchair says “No.”

When we workout on our own, people literally stop and stare. They stop us to say that they are inspired by us and that they can see our determination. They assume we are in training for a physical, competitive event like a triathlon or marathon. When they ask what we are training for I say, “I’m training for my daughter, Lucy, who’s in a wheelchair. I’m training for our life.”

Lucy is my motivation. When I don’t want to run, I still run… and I run… because I can run. She may never run, not in her whole life, and I just won’t take my ability to do so for granted. I push myself physically so I can carry her. So I can run with her. I do it, so I can be a “Yes.”

A couple of months ago, Lucy asked, “Mom, can just you and me go to Disneyland sometime? Just you and me. Not Daddy, not Leah.” (In my mind I quietly, nervously, calculated the number of times I would need to lift her. Then I told myself to “STOP IT!” And I told my daughter, “Yes.”

“Mom, can I hike through Goblin Valley?”
“Yep.”

“Mom, can we hike all the way up to Delicate Arch?
“Absoultely!”

Let’s just say it… there’s quite a difference in my physical appearance from Signing Time Series 2 to Baby Signing Time 3 & 4. Actually, I have been all over the scale map from the first show to the most recent.

Honestly, I’ve struggled with my weight my entire life and finally, finally I’ve found something that motivates me. A reason to push myself. A reason to really ask, “Is that all you can do Rachel? Are you sure?”
One word- Lucy.

A few nights ago I carried Lucy down the hall to get her ready for bed. I placed her on her bed, so that she was sitting up and leaning against the wall. She smiled at me and said quietly, “Mom, I can tell you’re getting stronger.”

And that’s the best reward of all.

My flight landed in Oklahoma City’s Airport. I looked around to orient myself. “Where is the baggage claim? The Hertz rental desk?”
The line of “Arrivals” hurriedly passed the rows of waiting “Departures.”

My husband Aaron was scheduled to arrive two hours after me. With this in mind I glanced around the airport keeping an eye out for power outlets, near tables and chairs. My laptop battery was almost dead, since I had used the entire flight to barf out 5 chapters of what will eventually be my autobiography.

On the flight, the guy in the seat next to me had brought a big, hardcover business book to read. When I popped open my laptop and started “barfing” onto a blank word doc., which was accompanied by sniffles and even tears sometimes… I noticed he reclined his chair, put away his book, and tilted his head in an ever so “I am NOT reading your computer screen… but I AM” sort of way. This went on for the remainder of the flight.

I am going to take it as a compliment. Perhaps the back cover of my book will say, “In a word- Engrossing!”

or

“1 out of 1 seat neighbors prefer Rachel Coleman’s autobiography over the business book they intended to read.”

On my way down to get my bag and the large hard-side Samsonite that a bigger than life Hopkins resides in… I checked my twitter and read a message to me from @symbolman
“Rachel, dunno your news situation, if you’re on a plane, but Michael Jackson is dead.. RIP”

My first thought was, “Is he joking?” But, I have met @symbolman and his wife and their son… and I didn’t get the sense he would… my thought was interrupted by an airport announcement “Attention travelers. The King of Pop, Michael Jackson has died.”

Clearly, he was not joking. I wasn’t home. I wasn’t in front of a TV, and wouldn’t be for days.

Aaron’s flight was delayed 2 hours, which gave me 4 hours to keep on doing what I was doing, before he arrived, and we would begin our 90 mile drive to Sulphur, Oklahoma. What was I doing? Oh yeah, I was thinking back over my entire life… pondering… wondering. How was this little life of mine all going to work out?

Death is a funny thing. Not funny-funny… but you know. Most of us live like we are going to keep on living and we are so shocked when people die! Do we forget that death is the only thing any of us can really count on? When people die, we say it was “untimely” but… in reality, it was timely, since death happened.

Which reminds me of one of my favorite quotes by Byron Katie in her book “Loving What Is.”
“When I argue with reality, I lose – but only 100 percent of the time.”
(A great book to read, if you don’t happen to be sitting next to me on a plane while I am writing mine.)

You know, Aaron’s friend Jed died recently and it was terrible! It’s still pretty terrible. We opened our swimming pool a few weeks ago and I had to catch myself, stop myself from suggesting that Aaron call Jed for a BBQ. Yesterday, I was making breakfast and Aaron was standing at the kitchen sink, staring out the window. Quietly, he said, “I’d sure like to meet Jed for a cup of coffee today.”

It’s disrupting that Jed is gone. It is not what I expected and it has not been what I am used to or what I could count on. I thought I could count on our friend always being around.

A few weeks ago I was watching Rachael Ray interview Dr. G (medical examiner). Dr. G was talking about her patients, who, by the way are dead. Rachael Ray had asked if DR.G’s job was depressing. Dr. G said it is quite the opposite. She pointed out that her patients typically have no idea, the day before, that they are going to end up in a morgue. This perspective has caused her to really live and love every minute she’s got, because none of us know when our number is going to be up.

It was late at night and pitch dark as Aaron and I drove through Oklahoma. We found a radio station that was playing a Michael Jackson tribute. It was cool. What can you say? Jackson was an icon. We all grew up listening to his music. Mostly, I think it’s sad that he was so mocked and so strange in his last years. Let’s face it… it was weird! And sadder still that we celebrate lives in amazing ways, once those lives are over… when the people we celebrate are no longer alive and they aren’t standing there receiving that acknowledgment.

Isn’t that lame? Seriously? We should stop that! We should tell people when we think they are amazing. We should open our mouths and acknowledge the people we live with and work with and love. We should thank our parents, (Hey mom… dad if you are reading this, thanks for feeding me, educating me and helping me become a half-decent human being!)

We should squeeze our children.
We should apologize profusely.
Thank your neighbors.
Send flowers for no reason… whatever!

What are we waiting for? What are we afraid of? All we really have is right now.
Right Now is powerful.
Just imagine if we went about our lives, armed with Right Now and actually used it!

When I was a little girl I wanted to be a marine biologist, as well as the typical stuff, a vet, a mom, a teacher etc. I also wanted to be an astronaut. Sure, the astronaut stint was around the time the movie Space Camp came out. I saw that movie ten times, at least.

My dreams of space faded when I found out just how much math is involved with becoming any scientific type and way back then we didn’t have computers easily available to do our math for us… “When I was a kid we had to count on our fingers, instead of downloading iPhone apps to do it!”

With that my NASA dreams faded… that was 1986.

…UNTIL…
In the year 2009 I received a call. NASA wanted me! I had arrived! No, they didn’t want me to go to space, but they wanted me to come to The Kennedy Space Center and speak at their Spring Diversity Program, “It’s About Ability!” – There wasn’t even math involved!

And… the coolest part (although there are A LOT of coolest parts in this story) was that after my presentation, I was invited on a 4 hour, VIP tour of NASA. (Move over Space Camp! You can keep your freeze-dried ice cream!)

Aaron and I arrived at Cape Canaveral. (I could bring one assistant and my current assistant (sidekick) is in school full time, AND this was a once in a lifetime opportunity, so what better side kick than my spouse?) The morning of the event we checked in at security, earlier in the month we had to provide al kinds of personal information in order to obtain security clearance. Let’s just say that I now have government clearance… probably top secret too, except I am not really allowed to tell you that… so shhhh, keep it on the down low!

NASA has THE BEST dot matrix photo ID printouts I have ever seen. Not kidding, Costco has nothing on NASA. My Season Pass at Snowbird looks like a child’s scribble compared to the perfection NASA produced. The worst picture ID card is from our neighborhood Recreation Center, and no, I am not saying that only because they took the photo AFTER I had worked out. (blech!) I am just saying they could REALLY learn a thing or two from NASA!

Once we got through security (we actually had to take a paper number out of one of those dispensers, which reminds you- oh, yeah, this IS a government agency like the Post Office) Bonni (should I have changed your name to protect the innocent?) took us to our first event.

NASA has a daycare.

Yep, scientists and technicians and engineers have children too you know. We pull up to the Day Care and the fire alarm goes off. (Luckily it’s only a drill) They passed the drill and everyone went back inside. When the kids were settled again we came in. Once inside, I heard whispers “sh, sh rainbow lady shh shhh rainbow lady” and then the noise got louder and clearer. “The Rainbow Lady!! THE RAINBOW LADY!!” They shouted.
T H E R A I N B O W L A D Y ! ! ! !

Hmmm… I’ve never been called that before, but it works. I came in, talked with the kids, read some stories and then asked them if they knew any Signing Time songs… they answered by bursting into song; “DO YOU KNOW THE COLORS OF OUR RAINBOW?” –at the top of their lungs. They sang the whole thing a ca pella. I stood there grinning. Their teachers were beaming. This was awesome!

Next we went to an auditorium, where the event, for the adults, was taking place. The auditorium holds a couple hundred, but my presentation would be filmed and broadcast over NASA TV where more than 10,000 people could access it. (just breathe)

I shared my family’s story and shared with them the amazing things that Leah and Lucy have taught me about how to treat people with disabilities and how each time I meet someone with a disability I get to learn something about myself.

Half-way through my presentation the 4 year-olds from the daycare came and showed off their mad signing skills, by performing “Colors of The Rainbow” with me for all the grown-ups. They did great!

I ended the presentation by sharing part of an interview I did with Lucy. I had asked her how it is to be in a wheelchair. Lucy’s insight continually blows my mind. She has a perspective I may never have and she shares it so brilliantly! She said, “I think when people see me, they see a little girl in a wheelchair, but when I see myself, I see a beautiful little girl!”

I could only follow that up with “Caterpillar Dreams.”

Then it was time to start our VIP tour! As we started out, we were told, “Feel free to ask any questions.”… I said, “I don’t even know enough about this to have any questions!”

Serious International Space Station!

Our VIP tour took us onto THE floor of the International Space Station Processing Facility.

Holy Orbiter Batman!

Aaron and I were under, over and right next to the Orbiter Discovery. Too cool!

Everyone in Acronyms!

We went through the VAB (Vehicle Assembly Building) one of the most recognizable buildings at The Kennedy Space Center. The stars on the American flag up there are 6 feet from point to point and they say you can drive a bus down those stripes… if you could get the bus to stick at that angle.

Next we went out to the shuttle launch pads. Both the Atlantis and the Endeavour were on launch pads, it’s pretty uncommon to see two shuttles on the launch pads at the same time.

Why Did The Turtle Cross The Road?

While driving from one launch pad to another, we stopped to move a turtle off the road… this is the sign for TURTLE. We joked that most likely, after we moved it to safety, it was snapped up by an alligator. We really did see alligators on the property too. Ah, the circle of life.

All Day and Night Crawler

The Crawler is about the size of a baseball diamond. It weighs 6 million pounds unloaded. It takes the shuttle and the mobile launcher platform from the VAB to the launch pad very, very slowly. One mile per hour! When loaded up with the shuttle it weighs 12 million pounds… and that is just way beyond my comprehension… too many pounds, just too many.

All I have to say is this, anyone who really believes the whole landing on the moon thing was a hoax is a complete dingbat… or else this is THE most elaborate government cover-up known to man. Who’s going to build 3 orbiters and pretend to service them for years and then fake a bunch of launches and landings? (Don’t answer that… just don’t.)

Thank you Bonni, Stephanie and Eric and all who took care of us and made this event so memorable! (Including you Tim!) Thank you NASA!

My Space Camp desire is currently quenched, with little to no mathematics. My 12 year-old self is at peace.

Who knows… maybe next year I will be invited to speak at Area 51. You know, they say it’s easier to cross a signed language barrier than a spoken language barrier. So, let me at those extraterrestrials, I bet I could teach those Aliens a sign or two!

Here I Go I’m On A Plane
Spring and fall.

I love spring and I love the fall. It gets crazy around here in the spring and in the fall.

Remember last September and October? (Natalie I know you are smiling… or cringing!) I was flying back and forth from one Signing Time event to another, stopping in Salt Lake City for the birth of a baby, or two… or three. Aaron and I rented a car and drove all night, arriving in Colorado just in time to grab a coffee from Starbucks and do my sound check at the Oh Baby Expo, while my friend Natalie endured how many days of labor??? Three? I don’t even know… but it was long enough for me to start out in Oregon, come to Utah, drive to Colorado and then fly back to Utah in time for the birth.

The busy season is starting. The calls are out to Marcus. My flights, cars and hotels are set.

This Friday I take off for 10 days. Then I come home for 4 days and leave again for 3 more days. Thankfully, I love traveling and the uncertainty of wake-up calls. I love highly chlorinated pools and fresh towels and fresh sheets every day. I love the view from hotel room windows, no matter where I am. I also love seeing new places and familiar ones. I love meeting all of you, hearing your stories, and sharing mine.

Here’s the run down for April and May. Hopefully I’ll see some of you out there!

Friday, April 24 – 4:00 pm
YUCCA VALLEY LIBRARY
57098 29 Palms Hwy in Yucca Valley, CA 92284
Join me for our 2nd annual singing, signing and story event at The Yucca Valley Library.
This is a free event, open to the public.

Saturday, April 25 – 11:00 am
Sunday, April 26 – 11:30 am
BABY & TWEEN CELEBRATION LOS ANGELES
Los Angeles Convention Center, South Hall, Hall K
Join me for my 3rd annual appearance at this fun and funky baby expo! I will be singing, signing and sharing how sign language is beneficial to all children of all abilities.
After each performance I will be at The Signing Time Booth for autographs and pictures.

Tickets: $10 per adult
For more information, please visit Baby & Tween Celebration LA

Thursday, April 30, 2009
I will be in Florida for a private and REALLY cool event! SHHHHHHH! I can’t wait until I can tell you all about it and show you the pictures!

Saturday, May 2, 2009 – 1:00 pm
BABY TIME EXPO – LAS VEGAS
South Point Hotel – The Events Stage
9777 Las Vegas Blvd South
Las Vegas, NV 89183
Wondering How To Sign With Your Little One? I will be sharing the benefits of signing with your babies and toddlers and walking you through how to start. Signing and signing included, of course.

Tickets: $6 per adult
For more information visit Baby Time Expo Las Vegas

Friday, May 8, 2009 – 7:00 pm
Vegas PBS Ready To Learn Family Concert
The Rainbow Library Amphitheater
3150 N. Buffalo Dr., at the corner of Buffalo and Cheyenne
Join me and Hopkins for our 3rd annual Vegas PBS event! This is one of my favorite events each year.

Bring a blanket and bring a picnic to this fun outdoor show. The amphitheater has limited seating, only a few thousand so PLEASE be sure to arrive early. I am not kidding. We fill it to maximum capacity every year and once the fire department even stopped by because they were worried had let too many families in!! What can I say? Signing Time and Vegas PBS Ready To Learn sure know how to throw a party!

Stick around for meet and greet opportunities after the concert. I mean, haven’t you always wanted to meet Hopkins?
For more information please visit: Vegas PBS Ready To Learn

Saturday, May 16, 2009 – 10:00 am
Association for Deaf Children 5K/1 Mile Walk
Draper City Park, North Pavilion
12500 South 1300 East
Draper, Utah 84020
Hopkins and I will be performing after the run, before the medals ceremony.

ADC sponsored my second trip to Ghana, Africa in 2008. This is great organization that that provides activities and services for deaf children in Utah.

For more information visit: www.dodeaf.org to sign up, volunteer or donate!

So…. Where IS Rachel?

Every single time I do an event… within 24 hours of that event, someone will email, or post, or call, or tweet saying, “Hey I would just love it if you did an event in _________!” (fill in the name of the town where I JUST performed). To keep this from happening to you, we have provided a number of ways for you to figure out where I am going and when I am performing…

1. Check our Signing Time Events Calendar for shows near you. This is found on our home page at www.signingtime.com

2. Visit our Signing Time Forums and read the thread “Where Is Rachel?”

3. Subscribe to the Signing Time Corporate Blog

4. Subscribe to our Signing Time Newsletter and we will send you an email letting you know when I am traveling near your town. Just enter your email address on our home page where it says “Newsletter and Promotions”

5. Follow ST_Rachel on Twitter.com (This is where I gave away free tickets to Baby & Tween Celebration)

6. Subscribe to my blog www.signingtime.com/rachel

7. Come to The Signing Time Chat on Wednesday nights 7-9 pm Mountain.

8. Join the Signing Time page on Facebook. The official page has a picture of me, Alex and Leah with the Signing Time logo in the corner. It says Signing Time (website)

If you do all of the above and you still miss me when I show up at your child’s elementary school, local educational conference, or Down syndrome Buddy Walk… I will be shocked! So, please stay on top of it and check back often Because, I just cannot remember where you all live. Sorry. I just can’t.

The flip side is, if you or your organization book an event, we put the word out about it through all of those Signing Time channels. Cool eh? Oh, and if you want to book me in spring or fall… or winter or summer for that matter… get in touch ASAP!

And so my friends, my orange shoes are packed and I am putting together my/your set lists. Yes, I fly with scissors (and blue and orange electrical tape) in my carry-on. That’s how I roll;)

Sometimes You’ve Just Got To Retreat

There are only a few things I dread.
One of them is the phone tree.

You know… when something bad happens and you have to call everyone in your family, plus your friends and tell, then re-tell what happened. I hate that. Maybe it’s because there are nine kids in my family… maybe not. Maybe it is exhausting even if you are an only child.

When Lucy was diagnosed with cerebral palsy at nine months, I was done. Prior to that I had really tried to just put on a brave face and pull up my boots and manage whatever it was I was dealing with. People would offer to help as I juggled a deaf three year-old, and a 9 month-old baby who continually arched away from the person holding her, her head thrown back and hollering.
“No, thank you,” I said, time and time again “this is my life. I do this every day and I need to be able to do it with or without help.” (Though I rarely did it with help.) These words almost became my mantra… “Thank you, no. This is my life. I need to be able to do this with or without help.”

Then, one day… I crashed and burned.
It’s true.
I couldn’t be strong, not for another minute.
I was curled up, in the fetal position, on the floor of our apartment and I could not stop crying… no it was more like wailing… I couldn’t stop wailing. I called Aaron at work and told him, “You have to come home. I can NOT do this!”

I broke.

I snapped.

I couldn’t imagine one more day, let alone many more years, of being strong AND brave AND responsible AND managing it all. It was just too much.

But I learned something that day, yes, the day that I was completely leveled by the thought of cracking open a can of soup and making a grilled cheese sandwich for Leah, I learned that sometimes you don’t have to be brave or pull up your boots and tromp through the waist deep mud. I learned that sometimes you’ve got to retreat.

Go to a safe place.

Lick your wounds.

Gather your strength.

Not only is there nothing wrong with retreating… it is necessary at times.

I watch my friends, especially the ones who have kiddos with special needs. I can’t help but note when they refuse help and assistance. As I meet families who are struggling with unexpected circumstances I let them in on my secret- “It’s ok to retreat.”

Sometimes it is “RETREAT!!!!!” like you might imagine hearing called out on a battlefield, when things are not going as expected or planned.

The last few weeks have been tough. Aaron and I lost a very dear friend. I did end up in the fetal position, crying, more than once… my head pounding as day after day my brain cycled through accepting and completely rejecting the fact that our friend is really, really gone…and sure enough just last week I was once again confronted by opening a can of soup when I realized it was 3:00 p.m. on Saturday and I had not even fed my kids breakfast.

The day before the funeral, my sister found out that the baby she had been carrying, at 18 weeks, no longer had a heart beat. I could hardly cry. I had nothing left.

I’m not Wonder Woman or Supermom.

I am just me.

And I am sitting here pondering how sweet
sad
fragile
short
and exquisite life is.

Sometimes, I need to be reminded to take my own advice… and retreat.

~In loving memory of our friend Jed Arveseth

Those of you who read this blog know that Emilie and I took Signing Time off the air because we do not have a sponsor and we cannot continue funding TV production without one. For those of you who are new to this conversation here is a brief recap of my previous post.

• As of October 2008 Signing Time is no longer on public television.

• Having Signing Time on public television has been a WONDERFUL experience. The stations and our distributor American Public Television have been fantastic to work with. You, the viewers have been loyal and supportive.

• Two Little Hands is not paid to be on public TV, in fact we pay to produce the episodes.

• Most children’s shows that are on public TV have a sponsor–a company or foundation that pays for production. To date Signing Time has not secured a sponsor.

• We simply cannot afford to produce episodes for public television without a sponsor.

• Many of you have asked what you can do to help. If you have a relationship with a business or foundation that you believe would be a great sponsor for Signing Time, share your experience with them and invite them to consider sponsorship.

• We hope to have Signing Time back on television!

As you know from reading my blog or attending outreach events all over the country, public TV stations are our partners. They chose to share Signing Time with their viewers. Our distributor American Public Television and many of the stations are disappointed in losing Signing Time, too. Many have told us that they want Signing Time back on the air. We are so thankful for their support! They have gone the extra mile to support the mission of Signing Time. We hope you support your local public television station and thank them for airing great shows like Signing Time.

If you, or your friends or family members are upset about Signing Time going off the air, please understand that it is not because stations cancelled the show. It is because Signing Time needs a sponsor (or to win the lottery! If you need to vent, vent here on this blog. If you want to write a letter, write it to an organization that you believe would be an appropriate sponsor for Signing Time on public television.

We love you guys! Thanks for your support of the mission of Signing Time!

Rachel & Emilie

Aaron and I went to Aruba.

I know! Don’t hate me! I didn’t even want to tell you.

You know how I love a good deal? Well, I also hate losing money. We had some international airfare that was going to expire, since I cancelled a trip in order to stay home and shoot Baby Signing Time 3 & 4. The trick was, the airfare was going to expire February 8th and we had to use it to go somewhere international AND we couldn’t transfer it anyone else. See! My hands were totally tied.

Add to that, Aaron and I don’t usually take long trips. We take little bursts of trips. Like 2 nights in Boston or 2 nights in San Francisco, just long enough to remember that, yes, we still like each other, but also short enough that our family members don’t disown us when we leave them to care for our children. Oh, and also, not long enough for Lucy to get too sick. Lucy almost always gets sick when we leave… wouldn’t you? Think about it. If you completely relied on others for your daily survival and the two people you trusted the most left… wouldn’t your system get thrown off a bit? Mine would. Lucy’s does.

When Leah was 2, Aaron and I went to Hawaii for a week. Other than that, Aaron, Leah and I went to Africa last year for 11 days, Lucy was sick at home through most of it. Last November, Aaron and I went on a business retreat to Mexico for 6 nights and Lucy was sick for most of that as well.

So, how do you balance not losing money, getting a good deal and trying to enjoy yourself while you are pretty sure at least one of your children is suffering and causing all of those around her to suffer as well?

You don’t. It doesn’t always balance. You might as well go to Aruba!

As you may have read, I recently certified in SCUBA, and I live in Utah where it is pretty cold, so I figured we’d go somewhere warm and SCUBA-worthy. Somehow we settled on Aruba. Why not? (If you haven’t read my adventures in SCUBA, stop here and read this. Seriously, it applies to this post in an embarrassingly ironic way)

After nothing but beach the first day, we signed up to dive with Mermaid Divers for three consecutive days. Our dive master, Bero was from Croatia. It took full concentration to get all the details and instructions, with his strong accent and over the roar of the boat engine. We did two dives each day. Day one was great, (Antilla Wreck and Pedernales) but, didn’t seem to compare to our dives in Cozumel. Was it the dive or that I just couldn’t seem to relax? I was worried about forgetting something. It had been three months since our last dive. I was glad we would be diving again the next day, so I could chill out. It was good to dive again and the watermelon was great.

The following day there were only a few divers. We hit it off immediately with a guy named Kenan. Who we accidentally called “Kenneth” for 2 days. Oops! Kenan is from Istanbul, not Constantinople. (Ha ha! Now the song is going to be stuck in your head!) We found ourselves laughing about everything with Kenan. The dives were great! (J/C Wreck and Plonco) We saw a turtle, an octopus, and I even got stung by a jellyfish! How’s that for adventure?

We rented an underwater camera for our second and third dive days.

J/C Wreck

Plonco Reef

The third and final dive day, we were happy to find that Kenan was diving with us again. This time, I wasn’t worried at all. We were still laughing and having a great time. We started the day off with our deepest dive, (Mas Bango) dropping to 125 feet!

Again, the dive was beautiful! We didn’t spend the whole dive at 125 feet, the area sloped up, so after a while we were at 60 feet. The area continued to slope to safer depths… And then it happened…

No, there was not one stinking shark the whole time, so DON’T get excited. Which reminds me, Bero, the dive master had said that usually on this dive there is a shark that he can approach, roll over and “hypnotize” as it floats sleepily on it’s back. I was DYING to find that shark, because that photo-op… me holding the hypnotized shark, would be PRICELESS after my last SCUBA post. Priceless! But we never saw it

Like I said, then it happened…

Wait, before I tell you what happened, you need to know this: When you dive down 33 feet, that is called 1 atmosphere and if you had a cup full of air, the air would compress in one half. If you continued down another 33 feet, that is another atmosphere and the half-cup of air would compress in half again, which is only one fourth of the previous compression. This continues, compressing the current amount of air in half and so on. The OPPOSITE happens when you come UP from depth. The air expands at that same rate, this is why when you ascend you let out all of the air in your BCD (Buoyancy Control Device) and swim up to the surface, blowing air out of your lungs all the way. You get rid of the air in your BCD and lungs, so it doesn’t expand and rocket you up to the surface, damaging your lungs.

And so… at around 30 feet, Aaron and I were taking pictures. Then Kenan motioned that he would take a picture of me and Aaron together. So, we all got vertical. Meanwhile, vertical, whatever air was in our BCDs is now all together at the top section of our BCDs. Then I took a picture of Aaron and Kenan. We were busy taking pictures and we were paying little attention to our gauges. Then, Aaron takes the camera while Kenan and I pretend to make out. And all of a sudden we realize that we have all accidentally SURFACED!!!!

I cannot write what was going through my mind, but I am sure you can imagine, lots of “HOLY’s” “OH MY’s” and “WHAT THE’s.” Aaron turned and dove back down fast. He had been reading a book called “Shadow Divers” and was all too familiar with what can happen if you surface too quickly or do not do a safety stop before surfacing.

I was stunned, looking at the sun shining through the water. The surface was only a foot above my head, at the most and I was still moving toward it. My mind was racing. Are we going to get sick? Am I going to die? Is this it? This is how I go? I die pretending to kiss a Turk under water? How absurd! How deep were we? Is the dive over? Can I dive back down or will that make things worse? I reached up and released the air from my BCD and sank back down, to the bottom with a hundred questions in my mind. There was only one thing I was sure of… one angry Croatian was waiting for us at the bottom.

Bero isn’t fluent in sign language, but he didn’t need to be to get his point across. He jabbed his pointer finger at his palm to scream; “LOOK AT YOUR GAUGES!” and then he jabbed his finger at his temple, seeming to scream; “WHAT WERE YOU THINKING?” He repeated these signs, over and over and over. I lowered my head and nodded. I was suddenly 6 years old and was SO busted! (Deservedly so.)

Aaron, Kenan and I continued the dive somberly. We were not smiling. We were not laughing. No one was taking pictures. None of us dared to look at each other. Each of us stayed uncomfortably close to the dive master. I imagined they were berating themselves, like I was. “That was SO STUPID!” “That was TOO close!” “That was NOT cool!” I could still feel my terrified heart pounding. I reminded myself to calm down and breathe slowly through the remainder of the dive.

After our three minute safety stop at a depth of 15 feet, the entire group surfaced. I was already bracing for the verbal reprimand. It came. Again, I nodded and mumbled quietly. “I know. I am sorry. I understand that was dangerous. I know. No, I was not paying attention. I know. I know.”

I felt sick to my stomach about the dive. I thought about just skipping the final dive, waiting it out in the boat. Then an image popped up in my mind; I was 16 years old, and I had just been thrown off my horse. I stood up in the arena, dusted myself off and I NEVER, ever got back on my horse again.

I closed my eyes tightly. Then I opened them.

And then… I switched out my tank, checked my gear, suited up and I stepped off the back of the boat into the turquoise water.

My Life Is…

Almost three years ago I noticed something about my life. I noticed that when I looked at all I was dealing with in work, family, home, and with my kids… when I looked at it all or even a part of it, I found myself saying, “Wow, this is really hard!”

I started to note each time I called my life “hard,” and when I told someone that things were “hard,” and I even noted when I thought that word. Loading a wheelchair into the car was hard. Traveling was hard. Miscommunications with Leah were hard. Lifting Lucy was hard. Communicating with my husband Aaron was hard. Filming and writing music was hard. Meetings were hard. Getting home before the bus arrived was hard. I also noticed that each day I was hitting the snooze button on my alarm clock over and over in a futile attempt to postpone getting up and dealing with my “hard” life.

Wow, “hard” was a powerful word and it was running rampant in my thoughts. It was almost a default word, a word I felt stuck with. I decided to try a little experiment. It was simple really. I would give up using the word “hard” to describe everything and I would find a new word or phrase to replace it with.

Was my life hard? Is my life hard? There are plenty of people who tried to convince me that my life really was hard, because in their eyes they completely believed that what I had was much harder than what they had. I didn’t care. I just couldn’t stand living with that thought about my kids and my family any more. Is having Leah really hard? Is Lucy hard? I dropped the word “hard” out of my vocabulary.

Now, what could fill that space? What would best describe my life? And how exciting to stand in front of a blank sheet of paper titled “My Life Is…” and be able to choose the next word. It was a little daunting. What would I choose to call my life?

I didn’t take the task lightly. I looked from many angles. One thing I saw was that I was managing a lot of unexpected circumstances. My life hadn’t gone the way I expected and I found myself wondering if anyone’s life goes the way that they expect. That would be so boring! I mean really! What if your life turned out exactly how you thought it would? My life could never be called boring. It was quite the opposite. That was it! Three years ago I wrote the words I now use to define and describe my life.

My life is an unexpected adventure!

It was simple and true, and so much more empowering than what I called my life before. For the past three years now, I have been living my life from that perspective and I think that anyone one who knows me or even watches from a distance would agree. My life IS an unexpected adventure.

This year, instead of a New Year’s Resolution, I invite you to take a look at the words you use to describe your life. Listen to the thoughts that are telling your story. If you have a default word, that leaves you clinging to your mattress, I invite you to take some time and fill in the blank for yourself with words that you choose.

My life is…

I can’t wait to hear what you come up with!

~Rachel