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…

Leah’s Thankful Too

A few years ago, both Leah and Lucy began asking for cell phones. (SIGH) Lucy rattled off the names of the other first graders who already had their own cell phones. Aaron and I tried not to roll our eyes. We said we would talk about it.

(Parental Huddle) What would be the best excuse? Did we even really need an excuse? Could we call and yell at the parents who had sent their 6 year-olds to school with phones? What if we said they could have phones when they could pay for phones and the monthly payment… that might put off Lucy, but not Leah. See, Leah has been working since she was four and she is not always paid in sushi.

We had the girls do the math. “Let’s say a phone costs $70,” I said. Their eyes lit up, I could see the wheels turning… Lucy was thinking, “I could earn $70!” Leah was thinking, “I already have $70!!”

AND” I quickly interrupted their wide-eyed musings, “it costs $20 every month. What does a phone cost for the first year?” Leah started adding quickly and her smile faded just as quickly. Lucy was adding slowly, quietly, “20 + 20 = 40, 40 + 20 = 60…”

“THREE HUNDRED and TEN DOLLARS!” Leah hollered incredulously. She weighed it out, was it worth it?

Lucy’s eyes got wide with disappointment.

“Yep” I answered, “$310 and that is just for the first year. You usually have to sign a two year contract.”

Leah was thinking again, I could see it. “Well” she said, “how old were you guys when you got your first phones?” Leah was sure she had us, with pure and simple logic. Aaron and I smiled at each other. “Daddy and I had a cell phone that we shared. I was 24 and daddy was 26.” The girls looked at us like we were lying.

From out of nowhere Aaron stated matter-of-factly, “you can have cell phones when you are in the 7th grade.” I agreed. It sounded good. Besides, that was YEARS away. It seemed pretty logical, I mean I was in Jr. High once… for three long, tedious, painful years and let me tell you, I stood in line for hours and hours waiting for the pay phone when my mom forgot to pick me up day… after day… after day. (Nothing against my mom. There were 9 kids to keep track of, I mean really! Can you blame her? I don’t.)

And so it was said and so it was written: The Coleman girls will get cell phones in the 7th grade…

Ummm… that was the plan. Then, a few weeks ago I kept finding myself saying, “MAN! I wish I could get ahold of Leah before she gets home from school!” or “I forgot to leave Leah a note again!” I received a couple of adorable, slightly concerned voice messages from Leah as she arrived home, finding the house empty.

“Hi mom. This is Leah. You are not home and I don’t know what is happening! (CLICK)”

With Leah, there is no, “Call me back.” Remember, Leah is deaf. I can’t leave her a voice message and KNOW that she will be able to decipher it. Sometimes we talk on the phone. It’s limited. I enunciate and speak loudly… all of the things you are not supposed to do in-person with someone who is deaf. I repeat the important things in hopes she catches them. Have you ever played The Telephone Game? Yeah, it’s like that, but there are only the two of us playing and we’re using real telephones.
I wonder if she understands less than she lets on.

Leah doesn’t enjoy talking on the phone. If a friend calls, she doesn’t take the call. I relay the info to her through sign. It makes me think of something she told me once. I had asked her if she preferred English or ASL. She said, “I am really good at both, but with ASL there is never any question what someone is saying to me.”

When we decreed: “7th grade!” Leah never asked again. As I have said before, she is very literal. Lucy, on the other hand has continued to let us know which other 3rd graders now have phones and how she should join the ranks of phone-toting 8 year-olds. Lucy is insistent, and not just about this, she is insistent about a lot of things. (I really don’t know where she gets it!)

The week before Leah’s 12th birthday, (even though she is only in 6th grade) the rule was broken. (GASP!!!)

Aaron and I went to the AT&T store. We found a great phone with a full QWERTY keyboard, which is also rated for assistive listening devices. We bought it for Leah. Aaron added Leah’s favorite songs to the Mp3 player. He added her family and friend’s phone numbers to the contacts.

The day of Leah’s birthday we told family members to call her new phone and leave “Happy birthday!” messages, or send texts to the phone. That way when she opened it, it would be full of greetings and love.

Aaron and I knew that this gift was not on Leah’s radar. We turned off the ringer and wrapped it in a jewelry box, deep in tissue paper.

We had both of her grandmas over for dinner, as well as my sister Rebecca and her family. After dinner Leah opened her presents. She later told me, that when she unwrapped the black jewelry box, she had the thought, “I like jewelry!”

And then… she unfolded the tissue to see a phone, with a picture of her mom and dad signing “I LOVE YOU” on the screen.

Leah stared into the box and started yelling, “NO! NO! NO YOU… DIDN’T!!!! YOU GOT ME A PHONE? THIS IS… MY PHONE? YOU GOT ME A PHONE! A PHONE!” – and then she BURST into tears. Through her sobbing she continued, “I have a phone! You got me a phone! You really got me a phone?”

An Innocent Box

An Innocent Box

"Hmm, I like Jewelry!"

Hmm, I like Jewelry!

"NO NO YOU DIDN'T!"

NO NO YOU DIDN'T!

A Brave Smile

A Brave Smile

Everyone at the table had tears in their eyes. Leah’s surprise and gratitude touched us all.

A few days after her birthday Aaron and I noticed this card lying on the kitchen table.

Front of Card

Front of Card

Middle of Card

Middle of Card

Back of Card

Back of Card

Sure, many kids are thrilled when they get their first phone, but in my daughter I saw something different. Leah’s world is a world of communication where she is often left uncertain, misunderstood or misunderstanding. Once again, through her hands, Leah is now connected and sure.

(To date, Leah has only answered 1 phone call on her cell phone, though she has sent hundreds and hundreds of texts.)

Being Thankful… for Leah

Being Thankful for Leah

Thanksgiving is over…
and Leah’s birthday is today. She’s 12! (I KNOW, just go back and watch My First Signs and she will continue to live on as a 4 year-old and we can all just pretend that 12 isn’t happening!!)

The night before Thanksgiving, I was thinking about the things I am thankful for and then I thought that I could probably surprise myself by actually diving into my journals and reading how it really was. I have 10 journals, so I opened one up to see what year and what thoughts it held… The first one I opened was from 6 years ago. The entry written about the Christmas after we shot Signing Time 2 and 3.

~~~~~~~~~~~~~~~~~~~~~~~~
December 29, 2002 – Salt Lake City, UT

Christmas was hard. We had nothing and could give little, even to our own kids. Aaron and I didn’t give each other gifts. Two days before Christmas my dad gave us $200. The next day my sister Julie gave us $200. We were then able to get Leah a bike and a Gameboy. She also got all of her Signing Time wardrobe clothes and the “Leah Doll” – it was pretty humbling.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

After I read that I called Aaron in. I read it to him and we both sat there stunned. We had to think, really hard to even remember that Christmas. The following morning, Thanksgiving Day, I pulled my dad and my sister Julie aside and thanked them for giving us Christmas 6 years ago. Neither one of them vividly remembered helping us out. Just as I didn’t vividly remember the Christmas we really needed help. If it hadn’t been in my journal, would their generosity and our need have been entirely forgotten?

Then I couldn’t stop. Each night I have poured over my journals. It’s been painful. It’s been funny. It’s been an interesting journey, to say the least. My journals are stuffed with concert tickets, notes, postcards, scribbles from Leah, photos, and songs I have written.

I dug deeper in time, reading the details of Leah’s birth and then found this:

~~~~~~~~~~~~~~~~~~~~~~~~~~~
December 10, 1996 – Salt Lake City, UT

… Aaron said, “It’s a GIRL!!!”
I started crying, “My baby, my baby girl!”
Aaron kissed me and said, “It’s Leah.”
Leah Jane Coleman. Leah who was called Anna before her birth. Leah who’d kick my ribs, (and sometimes my heart, it seemed) Leah who pushed against my guitar during all of those shows. Leah who gave me the feeling while singing “In Silence.”

Little Leah Jane whose daddy would run his fingers over my belly and say “Here’s your spider, here comes your spider!” Leah whose heels and knees I could slide around, whose little leg would press out hard as I massaged it. Leah with hiccups- Leah at 1:00AM and 10:30AM playtime.

Leah, who I threw up every day for. Leah who I prayed about and worried about. Leah, who made me what I’ve wanted to be most for years – a mom. My little girl’s mommy.

Leah with me while I hiked in Boulder, Utah. Leah in Bryce Canyon. Leah hiking the Zion’s Narrows. She’s my little girl. My sweet little girl now and for always. I love my daughter more than she may ever know.

It’s 3:20AM and I’m crying my eyes out. You’re here asleep next to me and your dad’s on the other side of you and that’s where we will always be, right beside you.

I love you so much. I love you more than you may ever know, maybe when you have a girl of your own. Goodnight my sweet girl, pleasant dreams. I’m so glad you are here with us. I love you, I love you – I LOVE YOU!”

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

I went forward in my journal, looking a year after Leah’s birth to find little bits and pieces. Confused entries about Leah’s hearing. Just a line here and there. Things like:

“We don’t know if she can hear us.”
“She has fluid in her ears, but her pediatrician thinks it’s more than that…”
“We can’t get in for the ABR test for 6 more weeks!”
“Still no answer on Janey’s ears.”

No answers in my journal for months and then I found this:

~~~~~~~~~~~~~~~~~~~~
March 31, 1998 Tuesday
Salt Lake City, UT

I don’t know if I’ve ever felt so alone in my whole life. I feel like there is no one I can talk to because no one would understand why I’m crying. Actually I think they would misunderstand. I don’t want anyone to feel sorry for me or for Janey. I don’t want to call our families and tell them what “PK” the audiologist told us today. Half of my tears are simply tears of relief. The wondering and questions are done. A tearful release of 2 1/2 months- fears, hopes, anticipation and prayers.

I know it’s not helpful but I can only blame myself, and it’s eating me up inside. I think that in his heart Aaron blames me too. In only these past few months people have asked if Jane’s hearing loss is because of my band. And playing and practicing while I was pregnant. People ask. Or they say “boy that must be devastating with you being a musician and music meaning so much.” Do they really think I give a S#*! about my music in comparison to my DAUGHTER?

I’d never sing or play another note if it mattered. Music is nothing to me. Leah Jane is my world. She is wonderful. She is beautiful. I feel like the biggest obstacle in her way is me. I don’t know sign language. I came so close to learning it, so many times. But I didn’t. I feel bewildered. But I feel thankful that we caught it as early as we did….

….We may never know what caused it, or if she as born with it. “Deaf” is such an uncomfortable word for me to use. In a way I am glad that I didn’t know when she was born. Maybe I would’ve treated her differently. Maybe I’d be totally over protective. Everyone would’ve treated her a little different. But now I have had 16 months of Janey. And treating her like a regular kid (except that she is more awesome than most kids)…

…I know of 3 people who are deaf. I’ve had conversations with only one of them ever. I hardly know what the term means. I remember the deaf kids in Jr. High and High school. I sure could not tell you any of their names. They all stayed together with their interpreter and I never gave them a second thought.

Severe – Moderate – Mild mean so little all your life. But today, I was told my daughter has a severe hearing loss. And I still barely grasp the concept. But the word SEVERE is clanging around in my brain. SEVERE? What does that mean? And what does deaf mean? Is there a scale to measure it on? If hearing aids help you are you still deaf?

She can sign a few words now. MOMMY, SLEEP, EAT, SHOES, THANK YOU, BIRD. When I teach a sign she always “rolls it and rolls it and sticks it with a B”

She has the most beautiful lips and puckers for kisses. She also puckers when I tell her “NO” because it looks like kisses. How can I keep a straight face when she does that?
When she gets frustrated she hits her head with her hands, or on the floor.

When she’s nursing, she looks up at me then squeezes both eyes shut tight and then pops them open. She nurses, and the corners of her mouth turn up in a smile. Maybe she’s never heard me say the WORDS I love you. But you know what? It doesn’t matter. It doesn’t matter at all. She probably knows it more than most kids who hear it every day.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

A few weeks ago Leah and I were talking. She asked me how I felt when I found out she was deaf. I told her, “I was distraught. I cried. I didn’t know what I was supposed to do. I was scared.”

Leah smiled at me and said, “That’s so funny mom. You thought it was terrible and now you know it’s not.”

She’s right.