~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
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

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

I would write this…

Our experience raising Leah is not typical, not typical at all. I dare say, we have successfully raised a deaf, bilingual child.

We did it in a school environment that called us “crazy.” In Leah’s Individual Education Program (IEP), where she transitioned from Early Intervention to preschool, we were asked,

“Why do you want ASL? No one else wants ASL.”

I didn’t care what the district said, because really, we had nothing… or was it everything, to lose.

The Parent Infant Program representatives from the state agencies told us that our child would graduate from high school with a third grade reading level. Then we asked them,

“Why do you believe that a child who cannot hear does not have the ability to learn?”

We asked them,

“What are you doing wrong? What is wrong with the education of deaf children in America?”

These questions kept us awake at night. Why on earth was it acceptable that generations of deaf children were being failed by the only school systems available for them to attend? It became VERY, VERY clear that we could not and would not entrust our toddler’s education to such an admittedly broken system. They could guarantee that after TWELVE years of schooling Leah would have broken English and at age 18 she would be able to read like an 8 year old. They would not prepare her to compete with her hearing peers heading to college and into the work force.

The solution offered was an embarrassment and I imagined what the reaction to that statement would be if it was said about any other group of individuals… Take a deep breath and try out the following~

“I’m sorry, your child is black. They will graduate from high school with a third grade reading level.”

“I’m sorry to tell you that you can expect your child to graduate from high school with a third grade reading level because she’s a girl.”

Go ahead and fill in the blank- “Hispanic” “gay” “has blue eyes” “short”… fill in the blank!
ANY of those statements would be met with riots! No one would swallow it as truth! No one would stand for it! It wouldn’t just be the parents up in arms, the entire community would fight for those children!

Imagine that your state-funded school had the balls to say that about ANY child!! These are your tax dollars at work.

Now, my friends, let it sink in that this is the reality for parents just like me. The Utah School for the Deaf and Blind said, “statistically you can expect Leah to graduate from high school with a third grade reading level.” Parents of deaf children have been hearing that sickening statistic for years and not just in Utah- this is a nationwide epidemic. The worst part is… parents believe it! They look at their little deaf child and believe that their potential is limited because some stranger from a state organization says so.

Where is the class action lawsuit?

Every child with a disability is guaranteed a “free and appropriate education”.

This conversation should make you feel sick.
It should make you angry.
It should be on the local and national news repeatedly until it is resolved!

For some reason, Aaron and I didn’t believe them. Instead we believed that we could offer Leah something much better than that. We would do it. We didn’t know how, but we knew that she was deaf, not stupid.

We sought out deaf adults and found many who had college degrees and PhDs!! Proof that a deaf person could succeed academically! Most of these deaf adults had deaf parents. Their parents had never struggled to accept that their child was deaf. These deaf children were in a signing environment from day one. We asked deaf adults for their advice on raising our deaf child. We asked them because they had lived the life that we wanted Leah to live… a life without limits. We followed their advice. We looked to the Deaf Community as our compass. They told us that Leah’s first language should be American Sign Language. They said that once Leah had a solid first language (ASL), we could then teach her English through reading and writing.
Finally something that made sense!

We were excited to share this breakthrough with the Early Intervention team, with the School District, with all of those people who could make a difference for every deaf child. We told them what we had learned and what we wanted for our child and why we believed it would work. They looked at us like we were crazy. They told us we needed to pick a program that they offered, they weren’t going to make up a new program just for Leah Coleman. It was such a slap in the face to have them simply re-offer their broken system, since that was all they had.

We visited every preschool in their system. We drove hundreds of miles to do so. We were looking for a teacher, the right teacher. At each school we saw the same sad scenario, the deaf children did not have free, expressive conversations, they were signing by rote.

Each time we met the teacher they would ask, “What’s her name?”
I responded, “Ask her.”
“NO! Don’t tell me she can…” and they would turn to Leah, asking her in sign, “What’s your name?”
Leah responded by fingerspelling her name “L-E-A-H” and then showed them her Name Sign.
The teachers, one after another were stunned.
“How old is she?” They asked me.
I rolled my eyes. “Ask her.”
“NO!!!” They turned excitedly and asked Leah, “How old are you?”
Leah smiled “I’m two-years-old almost 3. I’ll be 3 in December.”

It was as if they had just discovered a new species. They were fascinated by her. Then they would then sit down with Leah and ask her everything they could think of. Leah chatted on and on about this and that, her favorite colors, foods and the people in her life. The teachers were completely engaged.

And every visit ended with them saying, “We really would love to have her in our class. She would be such a great language role model for the other children!”

It was nice that everyone wanted Leah, but I had a sick feeling in my stomach.
A nagging question.

Who would be Leah’s role model?”

There was no ASL classroom and so we created one. We chose a deaf teacher and then we wrote into Leah’s Individualized Education Plan (IEP) that she needed to be in a language rich environment, one where she had access to acquire her natural language, ASL. It sounds simple, really and no one was opposed to writing that in to her IEP… BUT… when we explained that ASL is a visual language and it requires two fluent signers in a room for a child to have natural language acquisition, the team was a little perplexed. See, that is how we were able to get Leah a one-on-one aide. Her aide was fluent in ASL and the teacher that we chose was deaf. Now there were two signers in the class and our child actually had an appropriate and effective language model.

In school Leah could not communicate with her peers. They stared at her blankly as she signed on and on about this and that. Then she started coming home signing like them. I was horrified! All of our hard work seemed to be dissolving right before my eyes! I asked, “What did you do today at school?” Leah would respond in a repetitive, almost robotic way, “BIKE-BIKE-BIKE” she signed, not making eye contact with me. Then “EAT-EAT-EAT” “PLAY-PLAY.”
“Leah. Leah. Look at me. What did you do at school today? I’m asking a real question.” Every day the same answers by rote. She would sign like that for about an hour and then finally ease back into being the expressive, happy kid we knew and loved.

We went to the school and visited the older grades. K-4 we saw the same thing. As I looked at the projects and work displayed on the walls in each classroom, it was obvious to me that these children were not doing grade appropriate work. As far as language level, Leah was testing at the level of the deaf 4th graders, but she was only three-years-old. We couldn’t put her in with nine-year-old.

We also created a Deaf Mentor program for Leah. Leah had a Deaf Mentor when we lived in Utah, a wonderful woman named Diane would come to our home each week and teach us ASL. There was no such program when we moved to Los Angeles. Luckily it was in her Individualized Family Service Plan(IFSP) and so we continued it. We were told that it would be up to us to find the deaf adult. We agreed. We found a deaf man who was a teacher working for our school system. That made it easy for them to pay him. John came to our home once a week for an hour and we turned our voices off and just signed.

People always ask us how we did it. How we were able to smash the statistics. How Leah can comfortably identify herself as hearing and as deaf. The above is just one piece of that puzzle. We knew that Leah’s success was ultimately up to us. We couldn’t even pretend that the current school system would carry her. We took on her education and success as our own responsibility.

Most importantly Aaron and I saw Leah as a wonderful little girl with a bright and limitless future. We saw her as all of that even when so many others… so many “professionals” only saw her as a deaf kid.

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!

Yes this question is only second to “Why does Rachel have colors on her fingers?” With the ease and access that is now available through social networking sites like Twitter and Facebook the frequency of questions along the lines of “When is Rachel coming to my town?” are putting the color-coded finger question to shame.

There is no quick and simple answer to the first question but, I will try… The answer is this- I am not on tour. I am not coming to your town unless YOU, or someone like you makes it happen.

Generally, it is an organization that brings me out to speak or perform for their conference, expo, workshop, or community event. If you are involved with an organization who is putting together an event and you want me there, have that conversation with the people organizing it. Put them in touch with us.

Sometimes it is an individual who makes it happen.

Two weeks ago Ronai B. raised $2,500 for her Signing Time Community event in Maple Grove, MN and she sold over $2,500 in Signing Time products that day. Her goal is to raise $3,500 next year so that the Twin Cities can count on an annual Signing Time event. (While I was in Minnesota we had a community concert, two story time events and I even got to visit Super Fan Gracie who has been in the hospital since last fall.)

It's Signing Time with Gracie!

This actually reminds me of a lesson I learned a few years ago. We had been invited to go to Ghana with Signs of Hope International. The folks at SOHI really wanted Alex, Leah and me to come interact with the deaf children at residential schools in Ghana Africa. I told them, as soon as we had $25,000 in The Signing Time Foundation we would go. I waited for more than a year and surprise, surprise… no one mailed us a check for $25,000! Not one person or organization in an entire year sent us a big fat check like that! See! I was right. We couldn’t go to Ghana. (SIGH)

And shortly after that I was in a seminar about Money. One of our homework assignments was to ask someone for an amount of money that makes you uncomfortable and it needs to be for a cause you believe in. Yikes!
Before walking out of the seminar that night I knew who I would ask. I knew the amount that made me uncomfortable. I even knew the cause. We had a week to complete the homework.

Seven days went by and I hadn’t done it. I had almost dialed the number, but then I thought better of it. Hours before I was going to be driving to my seminar my sister Emilie called. “Did you do your homework? She asked. We were in the Money Seminar together. “No.” I said.
“I did!” She was excited.
“No way… who did you ask? What happened?”
“I was leaving the office and there was only one person there who didn’t work for us, so I knew he was the last person I would even see before our seminar, so I asked him. I asked him for a thousand dollars for The Signing Time Foundation so that you and Alex and Leah can go to work with deaf children in Africa and he said yes!”

Now, I wouldn’t say I am especially competitive with my siblings, but in the world of seminars and homework, I was not going to be one-upped by my big sister. I got on the phone and made my call. My plan all along had been to ask for $1000 for The Signing Time Foundation too. The homework assignment was not about getting the amount you asked for. The assignment was simply to ask. People could say “yes” or “no” and your assignment was complete.

One hour before my seminar began, I also got a yes.

Suddenly my eyes were opened! We hadn’t received any donations because we hadn’t asked! We hadn’t even told anyone what we were up to and what we wanted to accomplish and NOW we were two for two with little to no planning! I mean, Emilie just asked the last guy in the building!

The result was amazing. We kept asking. Some people said yes. Some people said no. They weren’t saying no to me. They weren’t even saying “no” forever. In fact one of the biggest, most embarrassing “nos” I received ended up funding a second trip to Ghana single handedly.

In a matter of weeks we raised the entire amount for the airfare, visas, vaccinations, ground transportation, food and board!

And we went to Ghana.

So when people say that they would love to have a Signing Time event but they could never raise the funds. I smile. Because I know they are right… you never get the things that you do not ask for.

For more information about creating a Signing Time Event in your community please visit The Signing Time Foundation.

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.

Run With Your Life - No Exceptions

~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”

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.  She asked Leah if she would like to run the Salt Lake City Half-Marathon too. Leah said, “Yes!” and she was excited about it. I was a little shocked! I don’t think I had run more than a mile until I was an adult. Leah eagerly jumped into the training schedule and so far, every week we have been running together in snow, wind or rain. The Run Club motto for this year is “I can be content in any situation.” That goes for running 8 laps to reach 4 miles (*boring*) or running through hilly neighborhoods with snow catching on your eyelashes which is kind of cool and distracting.

My first race was a full marathon and I had trained for it by following a book. But as for my half-marathons… well, I didn’t really train for them. I had been doing cardio and strength training three times a week, but I wasn’t following a program to build miles. (I don’t recommend you follow the Rachel Coleman Half-Marathon-Lack-of-Training Plan.) But once we joined Run Club, we had a real, live trainer! She has been working with kids for over ten years, helping them strengthen and condition for races.

So, now we run on Monday, Wednesday and Friday. On Friday we have our long run. Leah’s cheeks are red, her hair is damp and every time she completes her mileage she stops to go through her stretching routine and says, “Wow! I just ran ___ (4, 5, 6, 7) miles. I am so proud of myself!”

What an experience at age thirteen to know that you can run for an hour straight. You can run 7 miles. You can run it with a smile. Your body is strong! I am so proud of Leah!

But when Leah decided to register and join us for the upcoming race, I had to take another look at my 2010 goals. Would I rather break my personal time record… or would I rather cross the finish line with my 13-year-old daughter?

Aaron typically completes the assigned miles first. I finish about 10 minutes behind him. Alex and Leah finish about 10 minutes behind me. It’s been going this way, week after week. If I run with Leah, I will not likely break my personal record, but I will share a moment, unlike any other with my daughter.

A few weeks ago while we were running Leah said, “Mom, I know there will be a lot of people in the race, so how will I find you and Dad when I finish?” I told her, “You won’t have to look far, Leah. I’ll be right there with you. We can even hold hands as we cross the finish line.”

If Leah wasn’t thrilled at the prospect of holding hands with her mom, she didn’t let on. For all I know, she was thinking, “Hold my hand? Why don’t you just run your own pace and break your personal record? Oh, well. If it will make my mom happy… I’ll hold her hand.”

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?

In Physical Education at school they had this miserable idea of “treating” us to a different sport each month. (Oh, joy!) So, shortly after discovering I was especially terrible at softball, I was able to discover that I was equally as bad at volleyball. After volleyball, there was basketball, and I was miserable at that too.

Now, may I pause here and ask why anyone thinks it is a good idea to play dodge ball in junior high school? Really! Do we need to huck rubber balls at one another? In case you were wondering the person who always gets picked last for the team, is also the one that gets creamed first in dodge ball. It’s a reciprocation thing. Trust me.

I noticed one girl in my PE class who seemed to sit out every single day. I asked her how she got so lucky. She told me that she had a doctors note… she had ringworm. I wondered how I could get ringworm, too.

Never in my life was I called “sporty” or “athletic.” That was not me.

I got married when I was 21 years old. By the time I was 26, I had Leah and Lucy, and all of the surprises that came with them.

And then… in 2004, with my new iPod strapped to my arm, I ran the Inaugural Salt Lake City, Utah Marathon. My finish time was 5:27:22. Within the first 5 miles, my iPod gave up the ghost, but…

I COMPLETED A MARATHON!

I crossed the finish line and hurried home to shower and get dressed, because I had a presentation to give later that afternoon. I was booked to deliver a presentation to parents who have children with special needs. As I was running the race, I kept thinking, “You’d better hurry up if you want to shower, put on make-up and do your hair before speaking this afternoon!”

After that goal was crossed off my list, I didn’t think much more about racing. I did “the big one.” I knew I could do shorter distances if I felt like it…and I never felt like it. Life went on.

Not too long ago I came across Athleta, a company who makes some pretty fabulous women’s athletic clothing. While shopping on their web site, I read that they sponsored female athletes. I thought, “That is AWESOME! That would be amazing!” I continued to read about their sponsorship and then I heard this little voice saying, “Rachel, that is not you. You have never won a race. You’ve taken a yoga class, but you are no Yogini. You ran a half marathon in April, but you didn’t win it. You weren’t even trying to win. You have a couple of finisher’s medals. You are not an athlete.” So, I did not apply.

I bought their clothes and wore their clothes and since I really do love the stuff, there are photos on my blog of me wearing Athleta. My friends started buying clothes from Athleta too and we would chat and shop and tweet about it. We even race together all “matchy-matchy.”

Then, one day I got an email from someone at Athleta’s corporate office. The email said that they had seen my blog and were inspired by my story. They asked if I would apply to be one of their sponsored athletes!

I applied. But, when I spoke with them on the phone I was sure to reiterate how I had never won a race and how I was a mom, doing my best to be strong enough for Lucy… strong enough to be able to tell Lucy, “Yes” when so many other people, roads, and terrain would tell her “No.”

So…last month I signed an endorsement agreement with Athleta. I am one of their 2010 Sponsored Athletes! Most of the time, when I tell people about it I blush. I really do, because that “not sporty” “not athletic” 15 year-old version of myself is just bracing to get smacked with a rubber ball again. I’m waiting for someone to call my “bluff”, even though I ran two half-marathons last year. Even though I’ve hiked through Yellowstone with Lucy on my back, even though I took Lucy to Disneyland and transferred her countless times from her wheelchair to the rides and back to her wheelchair over three days… even though I had been training four times a week with a trainer to become strong enough for my daily life, training for my daughter Lucy and her wheelchair… even though I am 30 lbs lighter than when I ran 26.2 miles in 2004… even with all of that, there is still that little voice that says, “Rachel, you are not an athlete. You are just a mom.”

They said they felt my story was important to share because most women are like me; they are simply trying to find a way to balance their lives. You know what else I found out? Most women do not have a wall of medals either. They have children. They have jobs. They have circumstances that get in the way, too!

I feel really lucky, you know. Every day, my inspiration to be healthy and strong is looking right at me. She’s been living under the same roof for almost ten years. It just took me a while recognize how strong I could be. It feels so good to be able to see it in myself and know that I did it. I became what Lucy needed me to be.

Every time I lift that slippery 9 year-old out of the tub and wrap her in a towel, I feel like I am winning. I’m winning because there’s no concern in her eyes. She’s not worried that I might drop her or hurt my back, and I’m not worried about those things either. She knows that I am strong enough. I know that I’m strong enough. In those moments I smile.

And now I know – it’s one thing to reach for a goal just for me and no one else, and it’s quite another thing to strive for something on behalf of someone you love.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

And then…

It was 2009 and the conversation with my husband went like this:

“Hey Aaron, if you buy me a road bike, I’ll do a triathlon…”

I don’t care much for statistics- I’ve shared before that one in one thousand children are born profoundly deaf AND one in one thousand children are born with Spina bifida. Aaron and I got one of each… go figure. I am no expert in statistics, but from what I hear the likelihood of getting two – one in one thousands is actually- one in a million. There’s something about that that makes me smile. (Dear stat experts, if it’s not true, don’t burst my bubble… just keep it to yourselves)

I do like to think we have somehow beaten the odds. But, I don’t want to lead you astray either. See, it has not always been pink and rosy. No actually there were years… YEARS and YEARS where when we were asked how we manage it all, the answer was this, “Well, neither one of us wants to do this alone.” (Not super inspiring is it?) Even three years ago, if you had asked how Aaron and I “keep it all together” I would have told you, “Neither one of us wants to do this alone.”

A few years ago, I was sitting outside with Lucy on my lap. It was night and I was pointing out the three constellations that I actually know. As we sat under the stars, Aaron’s shadow was cast along the wall as he walked through our house. “I love that man.” I said.

Lucy quickly responded, “Well you sure don’t act like it.”

I was stunned. My first thought was to start listing all the ways Lucy was entirely wrong. But then I realized, maybe I could learn something here. I mean, Lucy lives with us and I was curious to know what her experience was.

I took a few breaths, then I tried to act a little disinterested, still looking at the stars above, “You think so Lucy?” I said, “Tell me about that.”

“Well. You never hug or kiss him and you never say ‘I love you’ to daddy.”
(Ouch! No, really- OUCH! She was right! That was bad news right there!)

“Hmm. You know what Lu? You’re right. Those are things I am going to work on. Thanks for helping me see that.” (But, still… ouch!)

We came inside the house. Aaron was doing dishes. I put Lucy in her chair at the kitchen table and walked up to Aaron, put my arms around his waist and said, “Hey, I love you.” (Was that surprise I saw in his face? Worse yet, was he shocked?)

“What did I do to deserve that?” He asked… (Oh great, he’s actually suspicious of me!)
And before I could come up with an answer a little voice from the table said, “Good job, mom! That was much better!”

I started thinking about what happened over the previous ten years. What happened? How did I go from falling madly in love with this guy, to having a fairly casual relationship based on a division of responsibilities?
You do the wash. I’ll put it away.
You do the dishes. I’ll cook.
You’re in charge of soccer. I’m in charge of art class.

Our marriage was not about loving each other or even enjoying each other’s company. Nope. For a very, very long time, our marriage was about survival. It was easier to deal with the day to day together than it would be alone. We had our kids and we both loved them very much.

Since I am not raising typical kids, I cannot speak to how it is for those of you who are. What I know is this, once we discovered Leah’s deafness, and then Lucy’s disabilities followed, well, it seemed that Aaron and I were engulfed in a spin-cycle of drama and survival.

With Leah it was assessing and doing our best to assure her “survival” in the education system. Contributing all we could to ensure that she would come out on top, or at least ahead of the very low expectations set for deaf children. See, we had been told to expect her to graduate from high school with a 3rd grade reading level. (Not on my watch!)

And with Lucy, “survival” was quite literal. Starting with our 18-week ultrasound, we did not know if Lucy would survive the pregnancy. Would the hydrocephalus (water on the brain) impede her brain’s growth too much? Then we had fetal surgery at 22 weeks. If Lucy had accidentally been born during the procedure we would have to make THE decision. And then post-op, she was (incorrectly) diagnosed with holoprocencephaly AKA Cyclops disorder. They told us her brain was missing the corpus callosum. We were told that she would not likely survive her birth.

But she did.

And then Lucy was diagnosed with cerebral palsy at nine months. And around that time there was a night where she seemed very lethargic and unresponsive. I rushed her to the ER in the middle of the night and the doctor told us if I had waited until morning, we would have lost her. Her entire system was septic. Her body was poisoning itself.

After that, month after month she had life threatening infections that would require daily shots of antibiotics in her thighs, one shot a day for 10-14 days in a row. I would pull into the hospital parking lot and she would begin whimpering. She wasn’t even a year old.

Aaron and I were ever watchful. We became experts in things no parent imagines. On the frequent ER visits, I would rattle off her medications, past procedures, daily procedures, hospital stays, surgeries and all of her doctor’s names. The nurses and doctors would ask, “Are you a nurse?”
“No” I answered, “I’m a mom.”
“We know you’re her mother, but are you also a nurse?”
“No,” I answered impatiently, “I am not a nurse. I am just a mom.”

But operating at such a high stress level changed the relationship of the “grown-ups” in the house. We were always focused on the girls. Always.
We didn’t even realize it.
If I had been aware of it, I don’t think I would have done anything differently. Would I sacrifice my marriage for my children’s well-being? Seems an odd question, since you could argue that a divorce would also affect their well-being. But, I already know the answer because for years we did just that.

And then one of the little girls I was so focused on, turned the tables and showed me that she was focused on her parents. She had been watching us. Her words, “Well, you sure don’t act like it” stung, but they only stung because I knew that Lucy was right.

We had allowed ourselves to fall into a default relationship in a default life. We were just reacting to the things going on. We were not choosing and creating what we wanted!

That year we sat down and as we planned out our year, we decided it would be: The Year of No More Somedays
And it was! We knocked off our biggest “someday purchase” and bought our pop-up camper, a camper we had talked about buying for 10 years, and we immediately started camping in it.
That year we also shot 13 new Signing Time shows and brought Signing Time to public television.

The next year, we sat down and created: The Year of Fun & Adventure
We went to Ghana, Africa.
I was nominated for an Emmy.
We went to Cancun and had the “strong enough” moment that would change all of our lives.

The next year, (last year), we sat down together and decided it would be: The Year of Health & Fitness
Need I say more? There was SCUBA, Aruba, Disneyland, and Yellowstone, plus two half-marathons!

We haven’t created 2010 yet, but I have some good ideas.

The Year of Yes
The Year of Disappearing Debt
The Year of New Heights & New Experiences
The Year of Miracles & Dreams Coming True

I encourage you to create 2010 for yourself, especially if you’ve never created a year and then lived into it. Create your theme with your family and loved ones. You don’t have to know what you are going to do to fulfill on the theme you pick, just pick a theme that makes you smile. Make up a theme that’s worth getting out of bed for each morning, and then, throughout the year you will start seeing opportunities to fulfill on your theme. I’ll let you know which theme we choose and I’d love to hear about yours!
P.S. Feel free to steal other peoples themes (or any of mine) if you see one that speaks to you.

From Rachel: Happy Birthday Emilie!
I was four years old and she was eight when we decided that we were best friends.

“You’re my best,” she said.

“You’re my best, too.” I answered.

And that’s how it was.

In some ways it was a simple rendition of the reality-TV show Survivor – Emilie and I had an early alliance. We had to, you see; in a family of nine kids, there were ongoing battles with the other siblings, and even though it seemed that it might be easier at times to join forces with the stronger ones, Emilie and I instinctively stuck together.

I was good at flying under the radar. Emilie was not…

(Seriously! Click now!)

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

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

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

I tried to conjure something up from the top of my head but the good was TOO good and the bad TOO bad.

Here, I’ll show you. Pictures and all. This is like a Coleman Christmas Letter test-drive.
“Lucy’s rabbit, Snowball, died the week before Christmas. We all cried. Leah found the dead rabbit and brought it into the house as she cried her eyes out.
Lucy: “This really hurts!”
Leah: “Sissie, I am so sorry. I will buy you a new rabbit in the spring with my own money!”
The timing was terrible! I had just told Leah to check on the rabbits, because Aaron and I were leaving for the airport. (Now you know why my babysitters quit! “Bye kids! Oh, by the way, Lucy’s rabbit just died. She’ll probably cry for days. Have fun!”)
I hate seeing my children in pain and not only were they in pain, we had to abandon them right in the middle of it. My great-aunt died the week before, but she was 89, so that’s ok.”
(See! That just came out weird. Let me try something else…)

Lucy and Snowball

Ummm. “We all did a liquid diet with Lucy before her bowel and bladder surgery. Please don’t ever use the words ‘jell-o’ or ‘broth’ in front of us, because we will dry heave… The surgery was Hell went great but it has taken months to figure out how it all… never mind.”
(Note to all- Leave bowel and bladder updates OUT of Christmas cards. P.S. No one wants to see your scars. No one.)

Pretty Good for 5 Hours of Surgery

“Aaron and I went to Aruba twice this year!”
(Enough said. No one wants to hear it how you were all warm and tan and visiting exotic locations. Leave gratuitous bikini shots out of Christmas letters, unless there are screaming children in the shot. If you must comment on the beach vacay, look miserable or REALLY put together. Put children in matching outfits and we will all know they are miserable- especially if they are smiling!)
NOT THIS:

Wish You Were Here

THIS:

Who Wears a Dress to the Beach

(By the way, they were SO miserable, heaven forbid your mother makes you wear a dress for an hour on Easter Sunday.)

So far, family and vacation segments were terrible. I know! I’ll tell you about work!

“Signing Time has music videos on Nick Jr.!”
(Just sounds like you’re bragging. I could try, “We haven’t been on public TV for a year.” <—But that sounds like whining. How ’bout “I didn’t get nominated for an Emmy this year.” But really, who did? How many people get nominated for Emmy’s? I really blew it by NOT sending out a Christmas card that year.)

SEE!

Do you see my dilemma?

In a perfect world. I would have a stack of photo-perfect Christmas cards ready to go in the mail with shiny Christmas stamps and all! Each card signed by each member of my little family.

But it’s not a perfect world. Is it?
Or… is it? Somewhere along the line I must’ve decided that sending out Christmas cards equals Having It All Together. <—-Which I don’t even pretend to do.

There is no perfection. It’s all imperfection, so that must be perfect!

Instead of a card, (because we’ve already been through how you are NOT going to get one) I’m going to let you peek in through our snow frosted windows and see three of my favorite Christmas moments. I may suck at cards, but I can safely say that I’m pretty good at videos.

Lucy’s Christmas Gift
The giant box with red ribbon had been under the tree for a week. Lucy kept eyeing it. She knew her name was on it. But, since she can’t hop down and shake her gifts, she didn’t know it was empty… until I put something in it on Christmas day.

I Can’t Believe You Are Crying!
It took me a little while to explain to Aaron why this gift made me so emotional. It’s one thing to buy gear before leaving for a trip. It’s another thing to buy it when there are no trips on the calendar. It was received as a promise of warm weather and good times to come.

Let’s Go Out With A Song
A few years ago, for Christmas, my dad gave me and my sisters some new arrangements of Christmas songs, with 5 part harmonies. This is the first one.
“Sleigh Ride/Jingle Bells” arranged by Lex de Azevedo
Performed by Rebecca, Rachel, Julie, Emilie, and Carrie

Here’s to 2010!

Love~
Rachel, Aaron, Leah, Lucy, & Jack (the rabbit)