Rachel Coleman

Last December I received an email with the subject, “I was her legs today. You had a part of it.” Ellen was writing to me from the Ukraine where she was in the process of adopting a little girl. Her email shared how my “Strong Enough” post had arrived in her inbox with perfect timing, timing that changed her family and changed their world. I was so touched, I asked her to please join me here as my first Guest Blogger. Here is their story:

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STRONG ENOUGH FOR NINA

After our youngest daughter was born with Down syndrome, we embarked in the most life altering journey of our lives. She had enriched our lives in meaningful and powerful ways. For this reason, I had spent almost two years looking at the faces of children on Reece’s Rainbow, an International Adoption Ministry for children with Down syndrome. I had fallen in love with many of them, praying that they would find forever families and wondering if any of them were meant to be ours. My husband Andy and I knew that adoption was in our future, but unlike me, he had not felt inclined to inquire about any of the children, so I waited. Occasionally, I would visit Reece’s Rainbow “Other Angels” page. These are the children with other special needs.

It was a late night in July, as I scrolled down the faces, I heard him say while he looked over my shoulder,

“Wait! Scroll back up a little”

I did.

“Right there” he said pointing to a beautiful smiling face, “That little girl looks just like a Stumbo.”

I stared intently at her face.

“Look at her eyes” he added, “She looks just like my sister.”

I got up to find our baby book. A small scrapbook I had made with our baby pictures before our oldest daughter was born. I returned to find him still studying the little face. I opened it up to the first picture and held it up next to the computer screen.

“Honey” I said, “She doesn’t look like your sister, she looks just like you.”

We stared at the photographs, blown away by the strong resemblance.

“You should ask what country she is from and if they have any more information on her.”

“Are you serious?” I asked excited.

“We have been talking about having another child, maybe our next child will come to us through adoption.”

“Does it say what her diagnosis is?” I asked

“Yes” he responded, “Cerebral Palsy”

Cerebral Palsy. The words were heavy, they fell on my heart and threatened to crush it. Cerebral Palsy? I could do Down syndrome, but Cerebral Palsy?

We decided to give ourselves some time to think and pray. We researched Cerebral Palsy and invited our close friends and family to help us sort through our thoughts and feelings. The fact that we wanted to adopt another child with special needs, did not mean that the time was now. I was scared about her disability and my ability to parent her. Could we do it? Could I do it?

As it is in many European countries, children with special needs are transferred from orphanages to institutions by the age of four. Once children arrive in these institutions, many die within the first year. We knew that time was of the essence, and if we were going to be serious about this, we needed to make a commitment to her soon.

It was during this time of “reflection,” that Rachel Coleman wrote her post, “Strong Enough to Be Her Mom.” It was a story about Lucy. Lucy, her beautiful daughter with Cerebral Palsy, her inspiration to be “strong enough.” Was she “strong enough to show her a word beyond sidewalks and ramps?” Would she be Lucy’s yes in a world of no’s?

Rachel didn’t know that the message she had shared in her story, was about to change the life of a little girl half way across the world. She didn’t know that she was asking me, “Ellen, will you be strong enough to be Nina’s mother? Will you show her a world beyond the walls of an orphanage? Will you be her yes?”

Tears started to trickle down my cheeks, they soon became a steady stream, and eventually the flood gates opened up and I was sobbing. I remembered what Andy had said earlier in the day, “She might have Cerebral Palsy but she still deserves a mommy and a daddy that will love her and believe in her potential.”

Talking about Rachel Coleman or Signing Time is common in our house. Our daughter walks around the house holding Rachel’s picture (sometimes she even needs to look at her while sitting at the dinner table) and constantly asks for a video or the music. We know all the songs, and almost all the signs. So when I told my husband I had just read Rachel’s last blog post and began to cry as soon as I said her name, he was sure I had had enough “singing time, and dancing time, and laughing time, and playing time.” But through tears I told him about Lucy and Rachel “I will be Nina’s yes, I will be strong enough for her” I said.

Four months later I held a sweet little girl with Cerebral Palsy in my arms. My daughter Nina.

For almost 4 years she had lived in one room. A room where she slept, ate, and played. Her life consisted of four walls. Even within the walls she had limitations due to her mobility. And while other children might have been taken outside to play once in a while, she stayed behind.

The first day that I was allowed to see her room my heart broke to a million pieces. It broke for the orphans, it broke for those children with special needs nearing their 4th birthday, and it especially broke for Nina.

I asked if I could take her outside to play, I could see other children on the orphanage grounds through the window. They said I couldn’t take her out because she couldn’t walk. I said I would carry her. They said it would be too hard, she couldn’t be carried like a “normal” child. I said I didn’t care. They said I didn’t understand. I said she was my daughter. They rolled their eyes, got her dressed, and put her in a wobbly, metal stroller.

After only a few minutes, I took Nina out of the stroller, it was impossible to maneuver on the uneven ground. I decided she could point and tell me where she wanted to go. As we walked around she would look at me and smile. The reality of her life continuing to sink in my heart. Her world was so limited not only because of being an orphan, but because of her CP. Her world limited to a room. Nobody was there to open her world. Nobody was there to be her “yes.”

I thought about Rachel and Lucy. When Rachel does not feel like running she still runs because she can and because Lucy needs her to be strong enough.

Nina had never had someone stand before a road, willing to explore, to walk, to be her legs. Nobody ever had, and in this place, nobody ever would. Would I be her “yes”? And when necessary, would I be her legs? Emotion welled up inside me, it needed to come out, to be released. So what did I do? I took off running. With Nina sitting awkwardly on my hip, we ran as fast as I could and for as long as I could. We ran, and we ran, and we ran.

Joy, there was pure joy in my daughter’s face! Because in that moment she had legs and in that moment she could run! It was pure bliss!

A worker shook her head at us. She wore a disapproving frown. But on that day disapproval was tossed away, and a child felt the cold wind on her face and ran! Ran with her mama!

That moment birthed determination in me. I will be her yes. I will be strong enough. And when necessary, I will also be her legs.

There are many children with special needs in Eastern Europe and other parts of the world. Reece’s Rainbow seeks to find families for these children. So just like Rachel challenged me, I will challenge you. Will you be a “yes” for one of these children?
Will you be strong enough?

You can visit Ellen’s Blog here: http://www.elliestumbo.blogspot.com

Your Bike Is Calling Your Name…
(and it wants you to ride 100 miles)
Originally posted on Athleta’s Chi Blog

You know the bike that’s in your garage? Yeah, you know the one. It’s the one that’s hanging upside down and taunting you every time you park your vehicle. Well, it’s summer and it’s time to dust that bike off. It’s time to sit down and RIDE!

I know the concerns you have because I have them too. I got my very first road bike for my birthday last October and it promptly snowed. Was I secretly thankful? Maybe. All winter my bike was there reminding me that when it finally did warm up I was likely to be flat on my back at the first stop if I forgot about those clipless pedals. It was reminding me that either the right brake or the left brake was the better one to use on a steep downhill grade. Which one was it though? How about those gears… all of them! Would I ever really figure them out? Let’s not forget traffic! Yikes! Vehicles zooming by and I don’t know the hand signals and what if drivers are texting and never even see me until…

Yes. There are a lot of “what ifs.”

There are also just as many “so whats!”

I would never figure it out if I never got on my bike. The same goes for you.

So here it is… an invitation from your two-wheeled friend.

Find A Buddy
I started talking about wanting to ride my new bike and suddenly I found a lot of people who were also putting off riding. My neighbor Krista hadn’t been on her bike in two years. She was happy to get back on and show me the ropes and I wasn’t too concerned about my complete rookie-ness holding her back. She mapped out a 13-mile ride, which seemed reasonable.

Ride Your Bike
Guess what? Riding 13 miles was much easier than running 13 miles. Even my heart rate monitor agreed. I was impressed by the amazing efficiency of this machine!

Register for an Event
The following week Krista and I scheduled a 26-mile ride, a good distance since I have a triathlon coming up in July with a 26-mile cycling portion. Yes, I registered for a triathlon when I had not yet been on my road bike. Talk about motivation to get cycling. Registering for an event will get you on your bike.

Register for Another Event That Makes A Difference
Later that week, while feeling especially optimistic, I registered for the MS 150, a two-day ride that benefits the National Multiple Sclerosis Society. Only after registering did I learn that my team was not planning on riding 150 miles over two days, they were planning on 175 miles over two days (just breathe). Later that week our MS 150 team “Saddle Soar” knocked out a 36-mile ride. I was feeling pretty good, even though I still didn’t have the confidence to drink from my water bottle while actually in motion. When I forgot to start my heart rate monitor I didn’t dare attempt to push that tiny watch button while still cycling. I didn’t know how to change a flat. I was definitely the “weakest link” and I was pleasantly surprised at how supportive everyone was.

Participate in a Supported Ride
Having only three rides under my belt and the MS 150 coming up in a few weeks, I wanted to experience a supported ride and I didn’t have much time. Little Red Riding Hood, an all women ride, had come highly recommended and had been on my calendar, but registration had quickly closed at 3000 participants. Luckily, two days prior to the ride a registration ticket fell into my lap! This ticket was for 58 miles and that felt just about right for my fourth ride.

Ride With People Who Inspire/Push You
The night before Little Red Riding Hood my friend Stephanie said, “You know Rachel, if you can ride 36 miles you can ride 80.” I questioned this philosophy, but Stephanie, who has tackled a number of century rides (that’s 100 miles) and even took on LOTOJA (206 miles in one day), was adamant. “No really, if you can ride 36 miles you can ride 80.” Stephanie and her friend Judy were both planning on riding 80 miles and they were considering 100 miles.

“Ok, I’ll try for 80.” Mostly I didn’t want to commit because… well… what if something hurt… like REALLY hurt. My muscles might cramp up. I might crash. If everything went smoothly I would do 80 miles, and by “smoothly” I meant that I didn’t want to suffer through it and I wasn’t willing to hurt myself.

The weather was perfect. The ride was beautiful! Farmlands, rolling hills, snowcapped mountains, bright blue skies and white fluffy clouds were awe-inspiring. “Wow, this is beautiful! Wow!”

Around mile 56 I got a flat tire. There were plenty of volunteers in SAG wagons watching for this very thing. Within two minutes a red pick-up truck was by my side and a friendly volunteer changed my flat.

By the time I arrived at the place where the 80-mile and the 100-mile routes split some interesting logic had been going through my mind. Trust me, four hours on a bike allows for a lot of thinking time. 100 miles suddenly seemed reasonable! Why stop at 80 when I was only 20 miles away from completing my first century?

Somehow it seemed easier to just ride 100 today… and that’s what I did.

My fourth ride.
My first century!

I did not wake up on Saturday morning thinking that I was going to ride 100 miles that day. I can honestly say I couldn’t have done it… and sure wouldn’t have done it without Steph and Judy.

And guess what? I can now start my heart rate monitor while riding, though I still haven’t dared to drink from my water bottle without stopping first.

Can’t you just hear your bike calling your name?

For a list of Women-Only rides check out this article on Cycle & Style- an online cycling magazine for women.

Aaron and I are riding the MS150 in memory of his sweet cousin Kolleen.
To make a donation and sponsor me in the upcoming MS150 click here!
To make a donation and sponsor my cute husband Aaron in the MS150 click here!

Once upon a time~
Someone sent me a link to a video about Team Hoyt. This was a long, long time ago. As I watched this father push his son, I was floored. I was inspired. It gave new meaning to “strong enough.” At the time I didn’t think that it had much to do with me, but I never forgot those images. I never forgot the love.

Last year when I registered for both half-marathons, I admit, I checked the rules. I looked to see if a stroller or a wheelchair would be allowed. The rules clearly stated that wheelchairs and strollers were NOT allowed. Did I secretly give a sigh of relief? Maybe. I’ll never tell.

This year I checked the rules again as I registered for the Salt Lake City Half-Marathon. Nothing had changed. In fact it stated “No wheelchairs. No strollers. No exceptions.” I was checking the rules for myself… sort of, I mean Lucy hadn’t even asked about it. I just wondered how it was that Team Hoyt seemed to find so many races that would allow them to participate when so far I was ZERO for Three.

And then one day not too long ago she said it…
I was in the kitchen. Lucy was on the sofa reading. She looked up and said, “I really want to run a half-marathon.” My heart sank just a little because… I had already looked. I already knew the answer was “no.” I smiled at my daughter and said, “That would be fun wouldn’t it?” But, I could still see the words “No Exceptions” clearly in my mind.

When Leah registered to run the half-marathon with us there was a part of me that felt even worse! What was I going to say now? “Sorry Lucy, see Leah’s just deaf and you… well, you got a bummer deal on the ol’ legs. You can’t walk and you can’t run so you get to stay home with a babysitter. Chalk one up for spina bifida and cerebral palsy.”

More than two weeks had passed since I made the call. YES, I made the call. I set the girls up with their homework and I went outside on the front porch. I shut the front door and I called the Race Director. I got his voicemail and I left the most compelling message I could muster up. In the face of No Exceptions, I was just committed (or crazy) enough to ask for one anyhow. I actually said, “I am calling to ask you to make an exception.” (Bwahahaha!)

Weeks went by and no one called me back, so I posted “Run With Your Life” and I only talked about Leah joining us in the race which was exciting and amazing and… I knew something was missing. You knew it too. You asked about Lucy in your comments.

Then… two days later I got word.
THEY WOULD MAKE AN EXCEPTION!
Lucy was in!!!

I might have jumped up and down in my front yard and whooped and hollered a bit. I just might have.

I couldn’t wait to tell Lucy. As soon as she was off the school bus and the bus engine had faded enough for us to talk I told her, “Lucy, I have really exciting news! You can do the half-marathon with us! We can all run as a family!” Lucy’s eyes were wide with disbelief. She put out her arms to hug me. Her eyes welled with tears. “Can you believe it Lucy?” I asked.

Still slightly shocked she looked up at me with a huge smile and said in a half whisper, “I am going to get a medal!”

We hadn’t been training with her and now the race was only a month away. We didn’t even own a jog-stroller. I called my friend Mike at Baby Bling Design Co. I knew that even though he doesn’t make the kind of stroller that I needed, he could tell me what I needed and point me in the right direction to find it. Like I said Mike doesn’t make that kind of stroller but as luck would have it he just happened to have one that he had used as a prototype for sheepskin stroller inserts. He had been trying to figure out what to do with this brand new jog-stroller in his warehouse. (Are you kidding me?) Within two hours of our “exception” Mike had donated the stroller and it was on its way to us!

And that’s how it happened that THIS Saturday Aaron, Rachel, Leah and Lucy Coleman will ALL be participating in the Salt Lake City Half-Marathon!!!
You can jump up and down a bit and even whoop and holler. I wont tell. Or better yet, if you are in town we would love to have you cheer us on. I think we’ll be pretty easy to spot… see, we’ll be the ones with the stroller.

~With special thanks to Team Hoyt for paving the way and special thanks to The Salt Lake City Marathon Race Director, Scott Kerr for being a “Yes” in a world full of “No”

At the beginning of 2010 I set a goal to complete my first triathlon and to run two half-marathons. (I like to do my marathons one half at a time.) And while I was setting goals, I decided to go for breaking my personal record of running 13.1 miles in 2:05:02. This year I will break the 2-hour mark.

Do I really think life is going to simply unfold just the way I plan it? You would think by now that I would know better than that.

Here’s what happened…

My 11-year-old nephew Alex (yep, that’s the Alex you all know and love) joined a Run Club. He began running three days a week after school with trainer Kasey Payzant and her club, which includes about twenty-five kids, ages six to eighteen. Then… my 13-year-old daughter Leah joined. Most of the parents drop their kids off to run for an hour, and pick their kids up later. That’s fine for most parents, especially since the Run Club is geared toward kids, but my husband Aaron and I like to do things a little different so we asked if “big kids” like us, could join too.

By the time we joined, many of the kids in Run Club had already committed to running the Salt Lake City Half-Marathon in April. Aaron and I were already registered. Last year, Aaron and I ran two half-marathons and we crossed the finish line before our two daughters, sleeping soundly at home, had even woken up. Come to think of it, we go to the gym when our kids are at school. Aaron and I often hit the ski slopes right after the bus picks up Lucy for school in the morning. My kids haven’t seen and may not even know about most of the physical activity and training that goes on in their parents’ lives!

And then… Kasey, our trainer, did something I had never thought to do.   Read more…

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

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

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

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

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

Read more…

We’re still in Yellowstone, remember?

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

We hiked the terraces of Mammoth Hot Springs.

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

We decorated our pancakes.

We watched Old Faithful and other geysers erupt.

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.

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!

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.

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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!

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.

If you haven’t figured it out, there are a lot of things we love to do, we love the beach, we love to camp and hike. When Aaron and I were first married we talked about moving to Alaska for a year or moving to Hawaii for a year and we talked about how great those adventures and experiences would be for our family, when we had one. Aaron and I had checked out Kauai and looked into moving there when Leah was almost one. Shortly after Leah’s first birthday we realized that she was deaf. We still pursued Hawaii and talked to Easter Seals about early intervention. We would have to island hop for audiology exams, hearing aid issues etc. We asked if there was a deaf community and were told, “Yes!! There are about 14 people in the deaf community.”

Aaron and I shelved the idea, realizing some things may need to be put off so that Leah could have all she needed. When Lucy came along it seemed like her physical limitations might also limit some of our family activities. I hated the idea that there really is not enough accessibility in many places for her.

At one point, I made a secret promise to myself on Lucy’s behalf. I would never be the one to limit our activities because of her wheelchair.

As Leah shared in her recent post, we kicked off Summer with a family (and extended family) trip to Cancun. We left for Cancun the day after we got home from the Emmys in NYC. Cancun was great! Lucy parasailed with Aaron. We sat on the beach and played in the waves. Aaron went scuba diving, Leah snorkeled. Lucy does not like putting her face in the water and still struggles with controlling her breath so a snorkel for her could be disastrous. I came across an ad for a glass-bottom boat ride and I thought it would be perfect for Lucy! She could see the reef without getting her face wet! I called for more info and it sounded good. Very, very, very last, I told them I had an 8 year-old in a wheelchair. I was placed on hold for awhile and they came back and told me it would not be possible for us to go. The boat is not really a glass bottom boat, it is a submarine. We would load from the dock onto a speed boat first, and it would take us out to the submarine waiting in the ocean. We would have to transfer from the boat to the sub and then down a series of stairs to our seats below the surface. When the tour was over we would transfer back to the boat and then from the boat to the dock.

I hung up and thought about what they had said. There was no room for a wheelchair and we could not transfer the wheelchair. Could I do this myself? Could I carry her? Could I do it without Aaron? It would be scheduled on Aaron’s scuba day, which I KNOW he would cancel for Lucy – I kept my concern to myself. I tossed it around in my mind for hours. If Lucy knew I was concerned, she would insist she did not want to go anyway. Lucy is almost 50 pounds and I would be committing to carrying her for 5 hours and transferring her 4 times! I decided that I could do it. I called back and made our reservation, this time I didn’t say anything about a wheelchair.

The night before our submarine trip I dreamt that we arrived for the adventure. I was carrying Lucy on my hip. The guide looked at me and said, “Are you crazy? We have to walk 6 miles to the boat!” In my dream I frantically asked others if I could borrow their stroller for the 6 mile trek. I think that might qualify as a nightmare.

The day of the trip, my mom, my sister Emilie and her son Zak decided to come too. The tour bus picked us up from the hotel. Lucy thought it looked like an airplane inside. When we arrived there was a long line. Mom stood in line and I sat Lucy on the counter until we were up. We made the first two transfers and the sub ride was a blast! We saw sea turtles, schools of fish, coral reefs and so much more! The ride ended just in time, as most everyone felt a little sea sick. We transfered back to the boat without a hitch.

It may seem like a little thing, but secretly I was really proud of myself.