Creating The Year 2010

Every year, especially around the time of my wedding anniversary, I hear comments about how X percentage of couples that have one child with a disability, get divorced. And how Aaron and I have truly beaten the odds by having a marriage survive this long with both of our children having disabilities.

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.”

Continue reading

You Don’t Want My Christmas Card

Every year I think about sending a Christmas card… but, I don’t do it.

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

First Christmas

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

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

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. Continue reading

The Storm- Before The Quiet- Before The Storm

The Storm- Before The Quiet- Before The Storm

Ransacked Beach

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

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. Continue reading

That Child Screaming on the Plane… is Mine

“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? Continue reading

It’s My Party… I’ll Have a Sale if I Want To

Today is a special day, a special day it’s true! October 9th, is my birthday!

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!

I Still Love Oregon

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!

Lucy Wakes Up to a Garden of Balloons

Lucy Wakes Up to a Garden of Balloons

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

Feeling Better

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 Killers in Portland

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

Walking The Beach

Yes, I brought longsleeves

Yes, I brought longsleeves

Picking up Sand Dollars

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!

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

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

Dru Loves Lucy Coleman

Then it was time to walk.

Walking in the Buddy 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?

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

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!

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

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

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

Tillamook Cheese Factory


We toured the factory and of course tried out the samples. My favorite? Horseradish Cheddar.
Don't Forget the Extra Cheese!

Don't Forget the Extra Cheese!


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?

The Coast is Calling

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.

WAY Better Than Surgery

We’re still in Yellowstone, remember?

Still Camping

Still Camping

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

Just Lounging Around

Just Lounging Around

We hiked the terraces of Mammoth Hot Springs.

Just Keep Hiking

Just Keep Hiking

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

Fortress of Solitude

Fortress of Solitude

We decorated our pancakes.

Pancakes Made with Feeling

Pancakes Made with Feeling


We watched Old Faithful and other geysers erupt.
Old Faithful

Old Faithful


Leah and Lucy became Junior Rangers, with Yellowstone patches and all.

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

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

We Love California

Lucy and Shamu

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!

The Last Hurrah

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!

Just what we ordered

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

Happy Camper

Playing kung fu games

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

I can cook anything in a Dutch oven

Roasting marshmallows takes patience AND focus.

Don't Mess With the Marshmallow

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

Clear Lake Trailhead


Such a beautiful trail

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

Somewhere Under The Rainbow


Catching His Breath

Catching His Breath


That's a whole lotta H2O

That's a whole lotta H2O

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

Self Portrait

Self Portrait

2 miles = Smiles

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

Boiling Mud Pot

Others are multi-colored fairy pools.

Do You Know The Colors of the Rainbow?

Do You Know The Colors of the Rainbow?

Some look like science projects gone wrong,

Yikes!

Yikes!

and some look like science projects gone right.

Aaron and Lucy at Giant Geyser

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

Stay in the car kids

And we saw a bear!

Roll Up The Windows Kids

Roll Up The Windows Kids

We stopped to hike the Tower Falls Trail.

Tower Falls

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

She's not heavy. She's my daughter

To be continued…

California Girl Takes Utah Girl to Disneyland

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.

Happiest Expensive Place on Earth

Happiest Expensive Place on Earth

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

p1000346

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!

Holding Hands on The Plane

Holding Hands on The Plane

They arrived and we immediately went to the poolside restaurant.

California Girls

California Girls

Lucy ordered jumbo shrimp cocktail, her favorite.

Who You Calling Shrimp?

Who You Calling Shrimp?

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

Orange shoes? Check! Colored Fingers? Check!

Orange shoes? Check! Colored Fingers? Check!

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.

Emily and Scott

Emily and Scott

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.

Hat to Hat

Hat to Hat

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

Yummy!

Yummy!

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. [caption id="attachment_1872" align="alignnone" width="640" caption="Dumbo at Night"]Dumbo at Night[/caption]

So Much Fun She Can't Even Open Her Eyes

So Much Fun She Can't Even Open Her Eyes

Can We Ride This One Again?

Can We Ride This One Again?


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.

A Small Accessible World

A Small Accessible World

After All!

After All!

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.

In Her Very Own Wheelchair

In Her Very Own Wheelchair


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!
Talking Cars are Non-threatening

Talking Cars are Non-threatening


Don't Stand, Don't Stand So

Don't Stand, Don't Stand So

Sully is Just Too Big

Sully is Just Too Big

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.

Don't worry. I've got this!

Don't worry. I've got this!

There Are Clown Fish in The Water

There Are Clown Fish in The Water

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.

Strong Enough To Be Your Mom – Part 2

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.”
On the Boat Cancun '08

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.”

Welcome To DisneylandEverybody say "Dumbo!"

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

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

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.
wo8i2478_2dsc_5411_2

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.

Lucy Coleman