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.

Day 10 Ghana 2012: Leah’s Wisdom

Monday, January 23, 2012
Last night we stayed up late and packed. We still have no running water. It was a really hot and miserable night. Jen and I are sharing a room. I woke up and saw that she was all cocooned up in her light blue sheet, (we brought our own sheets to use on top of the hotel bedding). The power was on and the fan was near her, so I said, “Jen, if you are too cold and want to kill the fan, go for it.” She peeked her head out and reached over and hit the “off” button. Immediately were hit with hot and humid air. It was so fast! “Ah!” I groaned, “or… you can feel free to turn it back on!” We both started laughing, as she quickly turned the fan back on.

Today is our last day. Curry, Aaron, Leah, Jen and I got up early and went to visit the deaf school in Koforidua. It’s very different from the school in Mampong. The Koforidua school has two vocational programs for their students, one trains them in the art of batik fabrics. The teacher walked us through the process.

I told her that Leah is an artist and the teacher suggested that Leah could stay with her for a few months and learn to do batik. I, for one, cannot think of a better option if Leah has rough teenage years. It’s nice to have an open invitation to a third world country for vocational training and a reality check, that’s for sure! The fabrics are beautiful and some of the designs are hand drawn in wax, while others are stamped, with carved wooden stamps, that have been dipped in the wax. The school sells this fabric to help pay for the cost of the programs.
(Click on photos to enlarge)

Every year, Signs of Hope visits and purchases large amounts of the batik fabric. Last time Curry came and purchased their fabric, the program used that money that to buy a new serger. The school also has a leatherwork program. The students are trained to make sandals, wallets, and belts.

This deaf school also has a special education class, the children are taught to Batik as well. We were told “their work is not perfect, but it’s still a good opportunity for them to learn.” Today was the first time that I saw children who have Down syndrome here in Ghana.

Today was a special day, because I was able to meet up with Amma, who is the mother of Shirley, who follows me on twitter. Shirley had seen me tweet when she found out about our Team going to Ghana. Her mother happened to be there already and had brought Signing Time DVDs with her for their family members. Amma met up with us at the Deaf school and took the tour with us. She has started the Kentucky Academy a Kindergarten program that also feeds the children. They currently have 100 children in their program.
It was great meeting Amma and she was excited to see the deaf school too. She and her husband have a group of volunteers that come from the University of Kentucky and she said that in the future their volunteers could stop by this deaf school when shopping for fabric. She asked me how, with all of my fans, I even saw the tweet from her daughter, let alone took the time to respond. I told her, it’s because I am not “a real celebrity”, it seems that “real celebrities” just collect followers, but rarely interact with them.

We went back to Mampong and made a hurried visit to Aburi. I stopped by Modest Fashions and got my dresses.

Then we went to the wood district and got the Wooden Probar.

I rushed across the road to see how Lucy’s wooden lollipop was coming along. My wood-carver was nowhere to be seen, but his Uncle handed me a cell phone. “Madam, I am sorry. I couldn’t do it. I couldn’t make the lollipop.” I was pretty bummed. The one thing Lucy had asked for and I wasn’t going to deliver. I walked back across the street where Aaron was still talking to Sammy. When I told them what happened, Sammy said, “I will make you a wooden lollipop by three o’clock!” We left for a few hours and when we came back…

We went to Mampong for lunch and had the most delicious chicken, rice and fried plantains. We all ate until we were stuffed!

We went back to the school for our last visit.

We hugged the children, told them goodbye and many of them pointed to the sky and told us that they would watch for us in an airplane flying over their heads.

As we made our way from the school grounds to toward the road we noticed a young woman who was signing and then we noticed that the person with her put their own hands beneath hers as they replied. Miracle of miracles, it was Sylvia! Leah and I went over and began signing with her. She was pretty confused at first and asked for her translator. Then Sylvia put her hands on Leah’s and Leah told her, “I am Leah.” Sylvia touched Leah’s face and hair, and recognized her, “Leah? You have grown! Your hair is braided too.”


Sylvia told us that she is now in high school, she passed the tests and is now the very first deaf-blind student all of Ghana to enter high school. We congratulated her, talked a little more and then really had to go. We needed to pack, load the tro-tro and get to the airport. The rest of our Team had moved on without us, but it was okay. Leah and I said our goodbyes to Sylvia and then, I took my daughter’s hand and we walked down the dirt road to the street. My eyes were full of tears and I glanced over and noticed tears streaming down Leah’s cheeks. She was smiling. I signed, “What is it?” She signed back, “Mom, she’s the proof. Sylvia is the evidence that anything is possible. She’s a deaf, blind, Ghanaian girl who is now in high school and plans to go to college. Mom, it’s not our circumstances that keep us from reaching our dreams. It’s our excuses that keep us from reaching our dreams.”

I put an arm around her and we walked. The sun was setting. The sky was smoky. We were both hot and tired. I couldn’t help but think back to the day in 1998 when Aaron and I found out that our one-year-old toddler was deaf. I had cried. I wept. That day, I imagined many, many different things, things that my baby girl could never do. I also imagined many things that I would have to give up, like writing and performing music. Honestly, what I couldn’t do back then was imagine all of the wonderful things that would happen to us. I couldn’t imagine the countless friends that we would have around the country and around the world. I couldn’t foresee how many lives we would touch, or how many children we would help with their communication. I had no idea of the many, many lives that would impact ours.

“I’m going to come back, you know.” I said to Leah.
“I know, mom” she said, “I’m coming back too.”

My Two Cents: Cochlear Implants

I used to feel sorry for children who had cochlear implants. I did.

When I saw them it broke my heart because I really believed that their parents just didn’t understand deafness. I judged those parents. I assumed that the parents were looking for a quick fix to something that in my opinion didn’t require fixing. I said things like, “I would never do THAT to my child.” Aaron and I talked about giving Leah choices and we decided that she could choose to have an implant when she was age 18.

We think that Leah was born profoundly deaf. We didn’t discover her deafness until she was 14 months old. When her deafness was diagnosed we immediately started signing with her. It seemed the obvious choice, I mean, she was deaf. We never bought into the old wive’s tale that signing would delay our child’s speech. Many people warned us that Leah might never learn talk if we signed with her. I always laughed and said, “She’s deaf, she might never learn to talk anyway!” My concern wasn’t for my child’s ability to say words. I wanted much more than that! I wanted full connection and communication with my daughter. I wanted her to be a critical thinker.

When Leah was seven she was no longer using hearing aids, because, as she put it, “They don’t work! They don’t help me, they just make my ears itch.” She had gone without amplification for a few years and then, at age seven, my daughter asked for a cochlear implant.

Let’s just say there were a few things I had to get over… oh, like realizing that some people out there might judge me, just as I had been so judgmental of others. (Ouch! Ouch! Ouch! Don’t you hate that one?)

Leah has now been implanted for seven years, the same amount of time she had gone without hearing a thing.

I have found that one of the BIGGEST misconceptions still floating around when it comes to choices in deafness is in thinking that sign language and cochlear implants are mutually exclusive. They are not. Actually it is our family’s experience that Leah’s success with her cochlear implant was because she was already fluent in American Sign Language* when she got her implant AND because we have continued to sign with her. We never stopped signing. (*She was also already fluent in written English by that time)

When someone receives a cochlear implant there is a period of adjustment as the recipient begins to understand the sounds of the world around them. It was invaluable to us to have a full language (American Sign Language) to communicate with Leah during this new learning period. We had full and complete communication as our child experienced the sometimes scary world of sound. Yes, our ENT told us to stop signing immediately after Leah’s implant surgery, which was baffling to me. “She just had major surgery and you want us to refuse to communicate with her through recovery? Her implant won’t be turned on for weeks and you want us to stop communicating with her?” To me that sounded like a form of child abuse. We never stopped signing with Leah and we never will stop.

Leah is a very successful implant recipient, we feel that these are a few of the factors that helped her to use it so successfully.
1. Leah chose to have an implant, it wasn’t something that was done to her. She was old enough to control the settings and she was old enough to ask to be “re-mapped” when she was ready for more sound. We viewed the implant as another tool to help Leah communicate, not the only tool.

2. Leah was already bilingual when she was implanted. She understood ASL and her written English was exceptional. She was reading beyond her grade level. With the addition of her cochlear implant she could simply focus on acquiring and improving her listening skills and pronunciation, because now she could actually hear some things. She wasn’t trying to learn English with her cochlear implant, thankfully she was already fluent in it and her focus was entirely on learning what English sounded like and how to make those sounds herself.

3. We always focused on our child’s strengths. Prior to her implant, we did not do private Speech Therapy. Why? Simple. Because Leah couldn’t hear:) We didn’t need her to learn how to say words in order to connect and communicate because we all learned to sign. Speech is a skill that your child has a lifetime to acquire.
Speech is not a language. Speech is one way to deliver a language.
English is a language, American Sign Language is a language, but speech… speech is a skill.

You want your deaf child to learn their first language before the age of 3 if possible. If they can’t hear, don’t waste your time and theirs trying to get them to learn a listened to, spoken language. Since Leah couldn’t hear English we didn’t try to get her to learn it through speaking. She learned it through reading and writing.
(If your child is deaf please read #3 until it makes sense. Do not get stuck with the thought that you “just want your child to talk.” Trust me, you don’t just want that. You want so much more for them!)

4. Language doesn’t delay language. The fear of signing is ridiculous and thinking that a child will not talk because they first signed is as preposterous as saying, “don’t let your child crawl or they will never learn to walk.” Babies crawl before they walk and they sign before they talk. If your child has the ability to deliver a spoken language, they will acquire that skill whether or not you sign with them. If they happen to have a speech delay or a disability that gets in the way of speaking, then thank heavens you are signing with them and giving them a way to be understood. If your child’s speech is delayed, it is not the signing that delays speech… it is something else entirely, because communication doesn’t delay communication.

Technology frequently changes and even fails. Cochlear implants can be rejected by the recipient. The implant may fail or simply never work at all. Batteries die and parts break. Programming can accidentally get erased. Sign language will never fail, the batteries will not die, you can use it while swimming, you never have to “turn it on” or struggle to locate it in the middle of the night. Sign language can get soaking wet and it’s always at your fingertips.

Leah will always be deaf. Her first language is American Sign Language. She has learned English as a second language through reading and writing. With her cochlear implant, Leah has learned how to pronounce words and to understand English when it is spoken to her. She is a child who has it all.

If you are considering implanting your deaf child, my recommendation is this – do not put all of your eggs in one basket. Give your child EVERY opportunity to communicate. Give them many tools! Cochlear implants do not work for all children, implants are not always successful and should not be portrayed as a “cure” for deafness. Similarly, hearing aids do not work for all children, they are not always successful and should not be portrayed as a “cure” for deafness. You might want to consider that deafness doesn’t need a cure.

Leah recently saw her ENT, the same one who had asked us to stop signing with her seven years ago. He asked her this time if she would like to implant her other ear, since she only has one ear implanted. She looked at him and said, “Tell me what you think that would really do for me?” He smiled and said, “actually not much, you do so well. Leah, I think you should save your other ear for the future. There are some exciting medical advancements that you will see in your lifetime.”

My two cents: Sign language should be the first choice for a deaf child, no matter what additional options you pursue.

Born This Way

When we found out that our one-year-old daughter was deaf, we made up a lot of stuff about what that meant for her and for us. It was TOTALLY made up; only, we didn’t realize it at the time. One of the things I decided was that I could no longer do music (I hope you are giggling). At the time it was a serious choice and I felt like it was a waste of time to spend hours and hours each week working at something and creating something that I believed my deaf child could not access. Sometimes, we react and jump to conclusions that have no basis in reality! Really!

When I wanted to sell my guitars, Aaron had the good sense to suggest I just store them under the bed. In 1997 I never would have believed it if someone had said that because of Leah’s deafness I would write over 100 songs and that this same child would be signing along with my music in the backseat of our car… and on stage!

Look at where we have come in the last 13 years since discovering Leah’s deafness. The truth is, I had no clue what her deafness meant for her future. I still don’t. But, I do know that life constantly surprises me and I even surprise myself at times.

This I know for sure, my children surprise me most. I really cannot watch the following clip without getting teary, because Lady Gaga’s lyrics are so apropos. Leah was born deaf, she was also born with music in her blood. She was born this way.

Here’s another one of our family’s “Unanticipated Milestones” – this is Leah Coleman’s first recital at Student Fest 2011. She’s performing Lady Gaga‘s “Born This Way.”

I’m Sorry, Your Child Is Stupid

I asked myself, Rachel, if you only had 1 year left to blog. What would you write?

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.

Run With Your Life: Part 2 – No Exceptions

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

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

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

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

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

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

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

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

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

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

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

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

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

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”

Run With Your Life

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

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

Here’s what happened…

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

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

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

You Don’t Want My Christmas Card

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

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

First Christmas

First Christmas

Yes, that is Leah. She’s a week old… well, not any more. She’s actually 13 and that photo just got me thinking that I should probably send out a card JUST so people know we don’t look like that AT ALL.

I am terrible at sending out Christmas cards. The worst part is, I WANT to be good at it. Every year I buy cards. Sometimes they even have the sticky place to put a photo, because I fool myself into believing I might really pull that off too!

Good Intentions

Good Intentions

My cousin Jen has it down. Hers is always the first card I receive each year. She must do them while we are all taking our turkey induced nap on Thanksgiving.

Perhaps, I should pride mine in being the LAST card people receive… or as reality would have it, the last card they don’t receive. (sigh) I am not good at the Christmas card thing and I should accept it.

Please don’t suggest I email a card, because really… emailed Christmas cards don’t even count! That’s all I am going to say about that.

This year, I sat down with Aaron and mused at the possibility of writing one of those AWESOME Family Christmas Letters. Now there’s a commitment!! I secretly believe some marriages end over those annual productions. I opened the 2009 calendar to see if I could remember what we actually did this year. GAH! First of all, my calendar is 4 feet wide and 3 feet high. The boxes are crammed full of appointments, flight numbers, and the school holidays are highlighted, so we don’t forget and accidentally drop our children off. I could hardly decipher the information, let alone organize it and make it sound lovely.

Be Very Afraid

Be Very Afraid

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

The Storm- Before The Quiet- Before The Storm

The Storm- Before The Quiet- Before The Storm

Ransacked Beach

Ransacked Beach

We had come back from a chilly, rainy day at the ransacked beach to find that something was different. The sliding glass doors that open to the hotel room balcony had been taped, not taped shut, but taped with giant asterisks of packing tape.

While you were out we taped your windows

While you were out we taped your windows

The wind had picked up. It had rained daily. (At least it was consistent) Of course we were hoping for better weather. But, since this was supposed to be a business retreat, maybe it was best that it was cool and windy and pouring rain.

Then there was a knock at the door. FYI- I don’t speak much Spanish. I opened the door and was handed two styrofoam “to-go” containers. “Gracias.” I said. It sounded like a question coming out of my mouth.

“Did you order room service?” I hollered to Aaron. He walked out of the bedroom and Leah followed. I held up the containers. We all sat near Lucy and opened them. Continue reading

The Last Hurrah

Only two weeks of summer were left and we had them planned, solid. The Last Hurrah would be 6 days in Yellowstone. See, Lucy was scheduled for surgery. She was scheduled just two days after we would be returning home from our Yellowstone trip. She and I would then spend the final week of summer vacation in the hospital while she recovered. Ideally she would be released from the hospital, just in time for school to start.

Ideally.

If there is anyone who should have learned to expect the unexpected, it’s me, but sometimes I just forget that part.

This is where our story begins.

I had never been to Yellowstone, so I dug through their website looking for information. Their website was not very helpful, there was simply too much information and I had no idea where to start. (so I will link you to it!!)

Yellowstone was… in a word, remarkable. We must’ve accidentally purchased the deluxe package because we saw it all. It was amazing!

Considering that I called a reservation center and was assigned a random campsite, we somehow ended up with an amazing site!

Just what we ordered

Just what we ordered

When I retire, I think I am going to be a Campground Host. Aaron is the one with the Parks, Recreation and Tourism degree to make it happen. I was going to be a nurse, because I wanted to help people, but I dropped out of college after my first year to become a musician. A musician! How silly is that? How many college kids bail on their degree to become musicians… pipe dreams I tell ya!

Back to Yellowstone and retiring. When I do retire, you can find me at Bridge Bay Campground, Loop H. I will have potted plants, an herb garden and a welcome mat in front of my RV. I will have a hammock hung between two lodgepole pines. Look for me in a high-end camping chair, the kind with two drink holders, a sunshade and a footrest. Living large!

Leah and Lucy are great little campers. I have proof. Don’t they look miserable?

Happy Camper

Happy Camper

Playing kung fu games

Playing kung fu games

We also take our food very seriously when camping;) Dutch Oven Meatloaf was our dinner.

I can cook anything in a Dutch oven

I can cook anything in a Dutch oven

Roasting marshmallows takes patience AND focus.

Don't Mess With the Marshmallow

Don't Mess With the Marshmallow

Aaron and I are ambitious hikers. So, on day two we set out for a 6 mile hike.

Clear Lake Trailhead

Clear Lake Trailhead


Such a beautiful trail

Such a beautiful trail

We would have seen two lakes and two waterfalls. I say “would have seen” because just 1 mile up the trail there was a sign that said the trail was closed due to “dangerous conditions.” Hmmm.

Okay! It’s time for Choose Your Own Adventure: You are a family of four, hiking in the woods. Your route, which was recommended by a Ranger at an Information Center, is now closed. You…
A. Keep hiking that path.
B. Turn around and hike back a mile. (Wow! A whopping 2 mile hike.)
C. Take another path.
D. Get eaten by a bear (you are in Yellowstone)

We went with option “C” and took another path. I’ll admit we stood there for a while and thought about it though. I realized that if it were just me and Aaron, I would have gone for the closed trail, but then again, I got into a paddleboat in a lagoon of crocodiles in Ghana… so, I bet you’re not surprised.

Yes, we took another path that lead us out of the woods, directly to the road. Then we followed the road to a parking area, and from the parking area to some well marked tourist paths. Boo! :( Oh well, we tried! Still ambitious, we hiked down Uncle Tom’s Trail, a path that the Ranger said we shouldn’t bother trying with a 50 pound child in a backpack. (Bring it!) It is pretty much a billion stairs down to the bottom of a waterfall. (Truth be told it is over 300 stairs and a descent of 500 feet) Aaron took the pack with Lucy down and back up. I’ve gotta say there were people, carrying nothing on their backs, who were huffing and puffing harder than Aaron. (Go Aaron, go!)

Somewhere Under The Rainbow

Somewhere Under The Rainbow


Catching His Breath

Catching His Breath


That's a whole lotta H2O

That's a whole lotta H2O

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

Self Portrait

Self Portrait

2 miles = Smiles

2 miles = Smiles

We had lunch and then continued on to the next stop.

Did you know that the center of the Earth smells like hard boiled eggs? Yeah, charming I know! In Yellowstone, there are countless geothermal areas, some spouting water and others just letting off steam, and all of them laced with varying degrees of sulphur. (Fabulous!)

Some are holes of boiling mud.

Boiling Mud Pot

Boiling Mud Pot

Others are multi-colored fairy pools.

Do You Know The Colors of the Rainbow?

Do You Know The Colors of the Rainbow?

Some look like science projects gone wrong,

Yikes!

Yikes!

and some look like science projects gone right.

Aaron and Lucy at Giant Geyser

Aaron and Lucy at Giant Geyser

Most of them smell bad! I really wish my blog was scratch-n-sniff right now.

I hiked Lucy around the mud pots. Leah thought this stop was torturous. The hot sulphur blasts of steam fogged her glasses and sent her reeling… she likened it to the open sewers in Ghana. Lucy, on the other hand, just hollered, “Pee-yew!” at each stop.

While driving up north to Mammoth Hot Springs, we saw bison.

Stay in the car kids

Stay in the car kids

And we saw a bear!

Roll Up The Windows Kids

Roll Up The Windows Kids

We stopped to hike the Tower Falls Trail.

Tower Falls

Tower Falls

This time, I carried Lucy down the trail and back up. As we hiked, I could hear Lucy saying something, quietly, to herself. I finally asked her, what she was saying. “I’m just counting your steps.” (That makes two of us)

When we were climbing back up from the waterfall, I stopped to catch my breath and drink some water. As I started back up the steep trail, Lucy could tell I was working hard, she leaned in, over my shoulder and quietly said, “Mom, this is what you are training for.”

Ok, talk about words of encouragement!

Did I tear up a little? Uh, maybe.
Did I pick up my pace? Yeah. I did. Because suddenly, I felt a little less tired.

But you know what, Lucy’s right! This is the event- waterfalls, dirt, trees and steep rocky paths with Lucy on my back. She’s right!

A few minutes later a curious voice asked, “How old is she?” I turned to see a couple in their sixties right behind me. The woman had asked the question. “Oh, she is nine.” I was breathing hard but doing my best to keep my voice steady.

“She’s nine?” the woman asked, surprised. Now I wondered, was she surprised because Lucy looks younger than nine or was she surprised that a 9 year-old was on her mother’s back? She continued, “Well, let me tell you something.” (here it comes) “When my daughter was five she always wanted me to carry her…” (ah, the latter) “and we came up with this game you ought to try.”

I kept smiling. I didn’t want to interrupt, that would be rude, but I already knew how this was going to play out. Somebody was going to feel bad.

She kept talking, “See I would walk ahead and tell her all she needed to do was meet me. Once she met me, it was her turn to walk ahead and I would meet her. You see? Then, before she knew it, she had walked the entire way!” (helps if you can walk)

“That’s really great.” I said, meaning it.

See, I don’t like this. I don’t try to leave people feeling like they shouldn’t have said anything in the first place, but I was pretty sure that in a few minutes, she was going to be kicking herself. I turned, looking back down the steep path and said, “The thing is… this trail isn’t wheelchair friendly… at all. So, if I didn’t carry her, she would just miss out on all of the beauty.” I said it smiling, cheerily, not in snide or rude way, I promise!

“Oh! Oh! I am sorry! She’s in a wheelchair?” (no she’s on my back, but…)

“Yep, she has spina bifida and cerebral palsy.” Again, I state it as a fact, like saying “the sky is blue.” No pity. (Please no pity.)

“Oh! My! I am sorry! So, so sorry!”

Was she apologizing to me or to my daughter? Was she “sorry” that Lucy uses a wheelchair? Or “sorry” for suggesting I force Lucy to walk? It didn’t matter, really. For the past eleven years I have worked on ways to give information about my kids, without adding drama. Additionally I have honed my skills, so that I can take someone’s reaction and diffuse it, and explain it to Lucy or Leah so that they can see it is just someone else’s point of view. It is not the truth. Most people look at Lucy and they can only see what is “missing.” They are blinded by the wheelchair, the disability. They cannot imagine the full and beautiful life Lucy has. The full and beautiful life we have, yes, even with a child in a wheelchair.

I used to want to smack people upside the head when they said ridiculous things, but now I listen to the reaction that goes off in my head… it’s just my synapses firing. I listen to the reaction, my reaction and then… a very calm, collected mommy chooses the words that come out of my mouth. (most of the time)

I just kept smiling and the woman continued, “The poor little thing!” (Please don’t say that in front of my kid.) I quickly cut her off for fear that we might be dazzled with some of my least favorite adjectives like “crippled” and least favorite statements like “she’s bound to a wheelchair.” (Want to see bound? Watch her without the wheelchair)

“Oh, no apology needed.” I said. “Lucy is a very smart and very fun little girl. We’re not going to let dirt and hills stop us from seeing so many beautiful things, are we Lucy.”

The woman continued, “Well, I really can’t imagine doing what you are doing. You are going to be a very, very strong young lady!”

“That’s what I’m working on.”
I smiled.
She smiled.

It was quiet.
We all kept walking.
We came to the parking area.
We completed the trek.
We did it.
And you know what? I don’t even think the woman was kicking herself.

Yes, this is what I’m training for.

She's not heavy. She's my daughter

She's not heavy. She's my daughter

To be continued…