There’s Nothing Wrong With Your Child: A Message From Leah & Lucy

I’m so excited to share my article There’s Nothing Wrong With Your Child. Really. It went live today on WhatToExpect.com in their Word of Mom section.

I hope this gives some peace and perspective to those of you who struggle with what to expect when you get the unexpected… like we did.

Rachel Coleman is the Emmy-nominated host and one of the creators of the children’s television show and DVD series, Signing Time! and its sister-series Baby Signing Time! Inspired by her daughter Leah’s deafness, Signing Time teaches families to communicate through American Sign Language. Rachel’s newest project, “Rachel & The Treeschoolers,” takes on the ambitious task of teaching a full preschool curriculum in 12 musical episodes and activities. (You can become a part of making Treeschoolers a reality by participating in our Kickstarter campaign)

Rachel and her husband, Aaron, reside in Salt Lake City, Utah, with their daughters Leah and Lucy, and Lucy’s Canine Companion service dog, Wilona. Rachel shares her family’s unexpected adventures (aka “life”) on her blog www.rachelcoleman.com.
Rachel is a board member for The American Society for Deaf Children. She is the President of the Signing Time Foundation whose mission is to put communication in the hands of all children of all abilities.

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

Unanticipated Milestones

Unanticipated Milestones

I’ve said it before, books like “What to Expect When You’re Expecting” were not written for me. I don’t think they covered fetal surgery in there. Their follow up, “What to Expect in the First Year” was also a total FAIL in my life. There should be a line of parenting books called, “Hang On For Dear Life!” or “When You Least Expect It… Life is Going to Come Along and LIFE You! (So Expect It)”
Okay, okay those are just working titles. The bottom line is when you have one of those kids that meet NONE of the milestones it can be… oh let’s see, where should I start? “Exhausting” is the first word that comes to mind, followed closely by “frustrating” and “disappointing.”

One of my children wasn’t talking or babbling by age 1 (because she was deaf and we hadn’t figured it out yet) and one who… sat up for the first time at age 3. Took her first steps at age 4. Can move a small game piece around the board without knocking everything over at age 10!

But hey, we get to celebrate and we do celebrate the little tiny things that other people might just miss or take for granted. Nothing is tiny around here. Every accomplishment just about brings me to tears, or at least gives me material for a new song:)

There’s this thing that happens, a sense of loss, like I’m giving up on something, for example~ Lucy’s first wheelchair. I cried! I cried and cried! It was an adorable KidKart! Really adorable and functional but, it was moving my 2 year-old from an unassuming stroller to a handicapped device. She wasn’t going to blend in any more. I felt like I was giving up on the possibility of her ever walking. (Why so personal Rachel?) I wasn’t giving up at all; she has spina bifida and cerebral palsy. Perhaps it’s just watching the future I thought I was going to have, clearly change course.

First Set of Wheels

I had a similar feeling when we found out that Leah was profoundly deaf and we realized that ASL would be best for her. It felt like we were giving up on the possibility of her ever learning to speak. So crazy! Why couldn’t it occur that we were giving her a language that she could be successful with? And why was it still about ME?

It has to be some default reaction, some programming or wiring… and the bottom-line is it most often feels like- “oh, they aren’t going to be like me?” Like I have got it so good? “Just like me” is the benchmark? Silly.

I thought I would start a new category here on my blog: “Unanticipated Milestones” I’ve heard from many of you recently dealing with those first wheelchairs and first hearing aids. Hey we just got our first accessible bathroom installed in our home and a few other cool things, that I never thought I would grow up and have, let alone need.

So, to celebrate: here is the bathroom renovation! I wanted it accessible, but not ugly or sterile looking. Aaron did the whole tear-out and moved all of the plumbing, he put it all back together again, installing a pocket door and painting. The guy is a rock star. He did not set the tile, grout, or mud and sand, he wanted to make that clear:) Also I didn’t take a good “before” picture, but imagine white laminate counter top across the entire wall, and an industrial utility sink… classy, I know.

He is NOT afraid to use that

He takes it down to the sub-flooring, has taken the toilet out… and is tearing into walls. Was I nervous… nah.

Who needs a toilet anyway?

Down to the studs? What a stud!

Wires and pipes and splinters oh my

Is that a blow torch? I had no clue we had something like that!! Does it work for crème brulee?

I was beyond impressed at this point

Photo shot through the new pocket-doorframe. You can see the new sub-flooring and all the plumbing is ready. I for one think it takes a brave man to move a toilet! (And a brave woman to let him)

Putting it back together again

Accessible sink and painted wall. The electric outlets have been moved. Aaron changed the light switch to a rocker panel, and he moved and lowered its location so that Lucy can reach.

Installed the sink to work with Lucys wheelchair height

Tile backsplash around the sink.

And the end result! TA-DA!

Lucy now has a place in our home where she can wash her hands… Oh the things we take for granted.

Bathroom Renovation Design for Lucy by Brian Clark Designs

Strong Enough for Nina

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:

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
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?

Ellen and Nina

Ellen and Nina

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

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