Covered In Love

Covered In Love: Our Experience With Canine Companions for Independence

The application has been filled out and it sits on my desk for close to a year. It is repeatedly buried by bills and then excavated as I pay the bills and file them away. It surfaces. I ignore it. Sometimes it feels like we might be biting off more than we can chew. Just, ask anyone and they’ll agree that Aaron and I already have our hands full.

Lucy has been struggling; it’s been two years of really unpleasant behavior. There is crying in school, outbursts at home, scratching, biting, swearing and resisting transitions. We’ve come to suspect that Lucy’s cerebral palsy may be the real culprit. As we meet parents of kids that have CP they share many similar stories, debilitating anxiety, uncontrollable outbursts.

So, the application sits on my desk another day, another week, and another month.

Whisper
I do a presentation in Sacramento, California. Nancy coordinates the event and takes us to lunch afterwards. Nancy’s service dog, Whisper, is by her side during the event and at lunch.

Over lunch I tell Nancy about Lucy’s fear of dogs, how every time a friend calls to invite Lucy over for the first time she asks two things,
“Mom, do they have stairs?”
“Mom, do they have a dog?”

Being in a wheelchair, if a dog jumps up on her, licks her, sniffs her, or puts their open mouth near her… she is helpless. She can’t just turn around and walk away. She can’t push a dog off. When dogs bark she flinches, she jumps.

I’m not a dog person, never have been. I secretly believe most dogs want to bite me.

But… Whisper… Whisper is just that, quiet and almost invisible! Whisper doesn’t sniff, bark, or jump. At the restaurant Whisper doesn’t give Nancy the “you’re eating and I’m not” stare. Whisper is quiet under the table and doesn’t even seem interested in dropped food. Whisper doesn’t take a potty break unless given a command. Whisper knows more than 40 commands.

Now, I’m fascinated. This seems like the perfect dog! Nancy agrees that Whisper is the perfect dog for her. They had been pre-matched through Canine Companions for Independence. I catch a glimpse, a little slice, of what having a service dog in our family might actually be like. I’m intrigued by Whisper… I actually like Whisper!

After lunch, we walk back to our car. Before leaving, I hug Nancy and say, “Thank you so much! I’m mailing in our application as soon as I get home.” Nancy encourages us to do it and she promises that we won’t regret it. I do my best to believe her.

A Team of Three
Within a few weeks of popping that application in the mail, we get a phone call from Canine Companions for Independence in Oceanside, California. They’ve reviewed our application. We’ve passed the first step of the process and they are calling to set up a phone interview!

On our phone interview we’re nervous and not quite sure how a service dog can help Lucy. We find out that since Lucy is not 18, she won’t hold the leash. This means that a service dog doesn’t free up our hands, it ties up one hand! I try to fathom pushing Lucy’s wheelchair, managing a dog AND signing to Leah. Hmmm. We find out that the dog can’t go to school with Lucy and some of her hardest times are at school. Hmmm.

The Skilled Companion team is made up of three- the dog, the recipient (Lucy) and the facilitator (myself or Aaron) and that team can be certified to go in public, on airplanes, in restaurants… anywhere really, as long as it is a team of three.

I’m still not sure what a service dog will DO for Lucy. If we are right there… and we always are, we can pick up dropped items, and we can open doors. Are we really going to ask a dog to do that? Seems superfluous. In the interview we mention Lucy’s difficulty with transitions and how even though we fought for her to attend public school, with socialization in mind, her behavior was isolating her socially.
Our interview ends. Aaron and I look at each other confused. Was that good? Was that bad?

A few weeks go by and we receive another call from Oceanside, California. Every time they call, I get emotional, confronted, excited, nervous, hopeful, my eyes fill with tears. I see the number on my phone and scream, “AAAAAHHHH!!! YOU GUYS, IT’S CCI!!!!” Everyone gathers around to see what it is they have to say. This time they say that we are invited to come for a face-to-face interview in December! We will work with dogs, learn about the next steps in the process, and share what we hope our family can gain from this new Companion.

I book the flights, car and hotel room. Our interview falls on the weekend of Leah’s 15th birthday. We make a vacation of it- and decide to squeeze in a trip to Sea World, perfect!

It’s December, we pull up to the CCI campus and my eyes fill with tears. Geez! Why am I so emotional? We unload and check in, meet the group of other hopefuls and get a tour of the campus.

The Fam

We spend part of the day in lectures. We learn the command sequence that facilitators use with the dogs and we practice the sequence and corrections on “carpet dog” not a real dog.
Then, they bring in real dogs. Aaron volunteers to go first. He loves Labradors.

Aaron at CCI

Since he goes first, I have to go second. I’m nervous, and I give the dog a correction before the dog has a chance to execute my command. I take a breath and remind myself to have realistic expectations. I get another chance and do better. I just don’t want to blow this for Lucy, if it really is an option to get a dog placed with us, with her. I praise the dog and it’s real praise, I’m SO happy that the dog actually sits when I ask it to sit.

The day ends with our face-to-face interview. In some ways it feels like we are designing our dream dog… “We would like a dog that isn’t aloof, one that will approach Lucy, since she can’t really get to the dog herself.”

It seems a tall request but I have to make it, “No barking?” We are told that is an easy request, none of the dogs bark, not even when the doorbell rings. They only bark on command. I’m baffled.

We request no excessive licking, sniffing or jumping up. This turns out to be an easy request; none of the dogs do that.

“No jumping on furniture” Done! The dogs will not get up on anything without a command telling them to do it.

I imagine the future episodes of doggy-doo tracked in the house. No, the dog won’t go to the bathroom unless you give the command, they are always on leash, so you just pick it up immediately. Really? No “landmines” tracked in from the yard?

We are now clear what the dog won’t do. But what will this dream dog do for our family? Maybe, it will be that missing piece that eases transitions? Perhaps it will become a built-in best friend? Will Lucy’s focus be on the dog rather than on her fears when we are out and about? Will people talk to Lucy about her dog, “Is that your dog?” rather than talk to me about Lucy, “Why is she in a wheelchair?” Any one of those might make a difference.

Aaron asks the final question, “Why would you place one of these amazing, highly trained animals with us? We can do all of the tasks for Lucy, I mean, we already do. We would just hate to take one of these dogs when that might mean that an adult or someone else who could really use it misses out or has to wait longer.” (We’ve already been told that the wait could be a year or longer.) The Instructor interviewing us smiles and says, “Lucy is absolutely a qualified recipient. The Skilled Companions meet a different need than a Service Dog. You aren’t taking anything away from anyone else.”

And that is it. We pack up. Say our goodbyes and watch Shamu splash around.

Lucy at Seaworld

If we pass this step we will eventually be invited to Team Training; a two-week course where we live on campus and are trained to work with the dogs. We are told that we will not be called unless there are two potential dogs pre-matched with us, that’s why the wait can be a year or more.

Summertime
“AAAAHHHHH!!!!! YOU GUYS, IT’S CCI!!!!!!” I’m in the car with Lucy and Leah, headed to Lucy’s swim lessons. I turn off the radio and everyone gets quiet. “Hello?”

“Hi, this is Becky at Canine Companions, we are calling to invite your family to Team Training for two-weeks in August.”

“Really? Really? Ok…. let me check our calendar and I will get back to you.”

Sometimes I fear what my calendar has to say. The calendar shows the first week of the two is scheduled for Camp Attitude– a week long camp created for children with disabilities, in Foster, Oregon… and the second week ends with my Signing Time concert in Boston.

Ok. Family Conference!
We sit down and discuss both options and decide we should take a vote.

“All in favor of going to Camp Attitude in Oregon?
One vote.

“All in favor of CCI in California?”
Three votes.
The votes will remain anonymous;)

I call Camp Attitude and cancel our spot. I call CCI and let them know we are coming. Lucy starts crying, “I don’t want to go! I don’t even want a dog!”

“Lucy,” I say, “it’s okay, it’s okay. I know you’re nervous. I am too. Listen, we can go and if it’s not right for us, we can choose not to have a dog. That’s part of the design. We go. We learn. We make a choice. But, remember, we’ve never had a dog pre-matched to our family. We’ve never had a dog that is trained like this. If we don’t go, we won’t ever know. If we go, we can be free to make a choice based in reality, rather than a choice based in a reaction, or an assumption and fear.”

She agrees.

We pack and drive to Oceanside, CA the first week of August.

As we pull into the parking lot of the CCI Campus, I’m overcome with emotion again! Seriously?

“This is real, you guys. This is real! We are here. We are in Team Training!!!”

We park, and Lucy informs us that she is NOT coming in. “Ok,” Aaron says, “whenever you are ready.” We’re pretty sure that at some point in the next two weeks she will choose to get out of the car. We unpack and go to our dorm room. It’s bigger than we imagined. We have a private bathroom, a bed, a hospital bed and a blow-up mattress and there’s still plenty of room for Lucy to maneuver her wheelchair. Sure enough, in a matter of minutes Lucy rolls in and our girls take off to explore.

Welcome Colemans

They discover two refrigerators in the kitchen; one filled with cans of soda. They are thrilled. Aaron and I get the full report from Lucy, “Mom, there’s Fanta and root beer and Dr. Pepper and even Cherry Coke, your favorite!”

Leah discovers a library of movies on VHS. The girls are excited to watch them all. There’s Apollo 13, Big, Forrest Gump, Castaway, and more. They start an unofficial Tom Hanks movie marathon.

Lucy and Leah come back and excitedly tell us that in the training room there are 12 dog crates with pink or blue nametags. We sneak in and read the names: Topper, Huntley, Waddie, Malvern, Wilona, Talia, Kong, Janessa, Leann, Donahue, Leon… hmmm, we discuss which names we would prefer NOT to have to call out for the next 8-plus years of our lives. (Malvern and Wilona top the list) We’ll start our training in the morning. It’s 9am-4pm daily. We’ll have Sunday off.

The following day we have lectures. We practice the command sequences. We practice with carpet dog. We learn so much about dog behavior and human behavior.

Breakfast and lunch are provided almost every day. Volunteers come in and feed the eight hopeful recipients and their families, and the whole staff.

After lunch the real dogs are brought in. CUTE! CUTE! CUTE!
Really? We are pre-matched with one of these awesome dogs? We look them up and down.

Day 1 CCI

We “ooooh and ahhhhh.” Aaron and I strategize coat colors and try to figure out what color we most prefer in shedding. (We did ask if we could get a dog that doesn’t shed… they all shed.)

We are told to try not to get attached and to try not to get our hearts set on a certain dog. The instructors bring the dogs around and we meet them. We are excited and nervous. Now, we work with the dogs. Leah keeps a secret tally, tracking the dogs that Aaron and I work with. We try to sort out which ones we might be pre-matched with.

The next day we work with more dogs, Leah keeps track. There’s one dog that I fall in love with, but I do my best not to get attached. She’s cute. She’s so white! According to Leah’s tallies we’ve worked with her most. It’s Wilona. Yes, one of the names we had originally said, would not work for us, and now it didn’t matter. She was Wilona, Willow, Willy, Wilsy and Wil. We pretend not to be super excited every time we work with her. Leah and Lucy do their best to suppress grins and giggles of joy. We try not to look disappointed when we work with another dog.

The third day of Team Training is when we are officially pre-matched with a dog. Everyone arrives to class on time. We anxiously await the announcements. They start with Lucy. “Lucy Coleman, you are pre-matched with…. WILONA!” They bring Wilona over to us and hand us the leash. I’m crying and smiling. Aaron has tears in his eyes and he roughs up Wilona’s fur. Lucy grins and buries her face in Willow’s neck. Willow licks Lucy twice and sits down by our feet. Leah has happy tears streaming down her face and signs, “I can NOT believe this is happening!” True. It is unreal.

She's ours

We learn so much. Day after day we work with Wilona. She stays in our room. The first few days I watch her with an eagle eye.
Is she going to get into the garbage? Nope.
Is she going to have an accident on the floor? Nope.
I take her out to toilet hourly, just in case. Wilona sniffs the grass, and then looks at me like, “really? I just went.”
Is she going to jump up on the beds? Nope. Not unless we say, “JUMP”.
There is no barking, even when we say “SPEAK” she looks at us warily, as if to ask “are you sure?”

Day after day, night after night, she’s a perfect angel. At some point we realize that Lucy has only had one outburst in almost two weeks. We are living in a new place. We are surrounded by new people and eight dogs… and Lucy is doing great!

Lucy and Wilona

We tell Willow to JUMP up on Lucy’s bed. Lucy falls asleep with one hand on her dog. Lucy falls fast asleep and doesn’t ask us to “snuggle”. Our daughter hasn’t fallen asleep without her nightly snuggle for 12 years. To our amazement, Lucy sleeps through the night. Our daughter has not regularly slept through the night in her whole life!

Sleepy Girls

We are in class until 4pm daily, and then we head to the beach. Aaron takes photos of sunsets… Leah, Lucy and I photo-bomb his really beautiful pictures.

Sunset Plus 3

Time flies and we are coming up on our final tests and graduation day. Every day we have quizzes on what we’ve learned. We practice with the dogs in restaurants, at the harbor, the mall and K-mart.

At The Pier

Aaron walks in our room one evening to find me snuggled up on Lucy’s bed with Willow. “Now, that is something I never thought I’d see in my entire life!” he says.

We play with Wil. We wrestle her. We play fetch. We brush her fur and brush her teeth. We clean her ears. I use a Dremel to file her nails. She never bites. I relax. “Mom” Leah says cautiously one afternoon, “you are covered in dog hair!!”
“No, Leah, I am covered in LOVE!” …And I am, I’m covered in love.

On graduation day we meet the amazing family that voluntarily raised Wilona for her first year-and-a-half. They gave her the groundwork, training and love to actually fulfill the job she was born to do. Only 20-30% of the dogs born and trained for this actually get placed as Service Dogs. We have brunch with her Puppy Raisers and they give us a book with photos of Willow’s first year and a half. When we come up on stage for graduation, they tearfully pass Wilona’s leash to Lucy. We tearfully accept. Wilona is officially Lucy Coleman’s Skilled Companion.

It’s amazing how much love, time, and dedication go into each one of the Canine Companion dogs. It’s amazing how much time, devotion and training goes into each family and recipient. Canine Companions is a not-for-profit organization, privately funded by donations. We paid for the gasoline to drive from Utah to California. We bought a few dinners. We bought a crate. Everything else, was given to us, everything else; leashes, collars, food bowls, a huge bag of dog food, toys, brushes, shampoo, toothbrush, poultry flavored toothpaste, a place to stay, meals and training… given to us. It almost seems too much.

Wilona has now been with us for eight months. The difference in our entire family is ridiculous. I never could have imagined that a dog would give us so much. I think back to those early interviews, our concerns and the question of what a dog could provide for Lucy, for us. Now I know why no one could answer that… it’s because there are no words to describe it.

They say a picture is worth a thousand words, so hopefully here’s a glimpse that communicates at least a tiny bit of the joy, peace, and love that our family found, in what seemed the most unlikely of places, our Canine Companion, Wilona Coleman.

Looks Like Love

Wanna Play?

First Day of School

At the Hospital

In the Car
Snow Day Wilona_0039

Finding My Inspiration

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?

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

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

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!

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