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.

Unanticipated Milestones

Unanticipated Milestones

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

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

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

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

First Set of Wheels

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

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

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

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

He is NOT afraid to use that

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

Who needs a toilet anyway?

Down to the studs? What a stud!

Wires and pipes and splinters oh my

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

I was beyond impressed at this point

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

Putting it back together again

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

Installed the sink to work with Lucys wheelchair height

Tile backsplash around the sink.

And the end result! TA-DA!

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

Bathroom Renovation Design for Lucy by Brian Clark Designs

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”

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

WAY Better Than Surgery

We’re still in Yellowstone, remember?

Still Camping

Still Camping

When we arrived in Mammoth, we saw elk, everywhere.

Just Lounging Around

Just Lounging Around

We hiked the terraces of Mammoth Hot Springs.

Just Keep Hiking

Just Keep Hiking

The terraces look like ice and snow. Very Superman, don’t you think?

Fortress of Solitude

Fortress of Solitude

We decorated our pancakes.

Pancakes Made with Feeling

Pancakes Made with Feeling


We watched Old Faithful and other geysers erupt.
Old Faithful

Old Faithful


Leah and Lucy became Junior Rangers, with Yellowstone patches and all.

The trip was a complete success! We packed up on Saturday morning to head home… head home for surgery.

Lucy would be admitted on Monday in preparation for surgery on Tuesday. We had it all planned out, remember?

Maybe it was scheduled too tightly. Lucy had to start a clear liquid diet the day we drove home from Yellowstone. Not so yummy. Chicken broth, sprite, juices, Jell-o and that’s about it. She would have a second day of clear liquids and then she would go into the hospital. Well, that didn’t go so well. She got sick. Really sick. I would prefer any one of us get sick, anyone other than Lucy.

Late Saturday night, I was asleep, and I heard Lucy cough. I sat up in bed, “Luce, you ok?” And then I heard it “RAAAAAAAAAAAAAH!”
This is not good. Lucy can’t roll over. She can’t sit up. She could choke… aspirate… When Lucy is sick, we are all on high alert, until the threat has passed.

I sprung from bed (truly I sprung, you should have seen it!) I hollered, “AARON!” as I ran. Then he sprung, because you spring when your wife screams your name as she tears down the hallway to your child’s room.

Then we spent the following 24 hours either right by Lucy’s side, or not far from it. It wasn’t pretty. Trust me. (This is the part where you are SO glad that blogs are not scratch and sniff.) Lucy, with the flu is a 4 man job. Someone to hold the bowl. Someone to hold her up. Someone to hold her head up as her little body is wracked. She burst blood vessels in her eyes, from retching so violently.

Poor Lucy. Was it the liquid diet? Stress over the upcoming surgery? Maybe she was just sick with the flu. I know the clear liquid diet was on her mind, because after she would hurl, she would look up at me, smile and announce, “Chicken Sliders! From The Cheesecake Factory!” She was having me make a list of things she wanted to eat once she had recovered from surgery. It was kind of pitiful, really. “RAAAAAAAAAH!…. Peanut Butter Cup Shake!”

She was so tiny, weak and pale… or seemed to be, until she hollered out her next dream food. “Cherry Cheesecake Ice Cream!”

Monday morning I called the hospital to let them know she had been sick. They asked me to bring her in for an evaluation to determine whether or not surgery should be canceled. We packed like we were going in for surgery and a week of recovery.

Very Sick Girl

Very Sick Girl

I told the doctor everything that had happened in the past 48 hours. Then he announced that it would be best to wait and reschedule the surgery.

Lucy had just completed 48 hours of eating nothing but clear liquids and ralphing them up again… and we would have to do it all over again in a few weeks, hopefully without the ralphing.

The doctor left the room. Lucy and I were both tired. She looked at me and said sadly, “But… mom, I’m ready. I’m ready to have surgery.” (Proof that reverse psychology actually works)

We hugged, and then, two very exhausted girls had a little cry.

Then we got our things and went home.

But wait, it can’t end there! That would never do!
(Kei, put away your Kleenex!!!)
As soon as Lucy felt well enough to eat Chicken Sliders from The Cheesecake Factory, which was within a few short hours of canceling her surgery, I booked flights to San Diego!

Early Wednesday morning Lucy, her cousin Clara, and I flew to California and went straight to Sea World for three days!

We Love California

We Love California

Lucy and Shamu

Lucy and Clara giggled non-stop… for three days! On the flight home, Lucy smiled and said, “Hey mom! That was WAY better than surgery!” Once again, Lucy is right.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
P.S. Lucy will start her liquid diet this Saturday. Aaron, Leah and I will join her on the liquid diet for support. The plan is that Lucy will be admitted to the hospital this Monday…

Plans are overrated.

We might just no-show and go to Sea World again!

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…

Strong Enough To Be Your Mom – Part 2

Remember last summer, I was in Mexico having nightmares about a promise I had made to Lucy.
(If you missed that, read: Strong Enough To Be Your Mom – Part 1)

Anyway, last summer in Mexico I found an advertisement for a glass bottom boat. I thought it would be perfect for Lucy, because she is not a fan of putting her face under water. She has dysarthria<--- which came along as a sidekick to cerebral palsy<--- which came as a sidekick to spina bifida (Thank you very much).
Because of her dysarthria, snorkeling does not work for Lucy. It is tough for her to get her body to either breathe through her mouth or her nose.

I asked Lucy if she would like to see the fish, but do it in a boat and not even get wet! She loved the idea. I called the company to make the reservation. I asked them about wheelchair accessibility 😉 there was none. A bus would pick us up and take us to the main location. We would board a speedboat and it would drive us out to a small submarine. Then we would transfer onto the sub go down a tight spiral staircase to our seats below!

No wheelchair. Not for any of it. We would be gone for at least 6 hours.

Could I do it? Could I carry all 40+ pounds of her? Could I carry her as I exited a boat, out in the ocean, and hopped over to a sub?

Was I strong enough to bring her to new experiences? Or because of my lack of physical strength was she literally “bound” to her wheelchair? Was I strong enough to show her the world beyond sidewalks and ramps? The worlds of dirt and gravel and sand and water and beauty? What would she think of me if I failed her? Worse yet… what would I think of myself?

My nightmares the night before included being dropped off with her in the desert, with nowhere to rest, nothing but sand, sand dunes and smooth rocky hills. After hours in the hot sun, moving her from piggy-backing to a side carry, to baby-in-arms hold, I frantically looked for anyone who might have a stroller. Even in the deep sand a stroller would give me a little rest and we could still slowly move forward. I moved her to my back as we bouldered across mountains of rock.
When I woke up I was exhausted, soaked with sweat.

That was a year ago.

I was able to hold her as we stood in line, transferred to the boat, transferred to the sub and back to the boat. We had a great time together and I don’t think my daughter ever knew my fear… my fear that I would let her down. The fear that I might be just one more “No!” in a world full of people, who throughout her life, will simply look at her and tell her, “No.”
On the Boat Cancun '08

Something changed in me that day. I began working out harder at the gym, running faster and farther. I looked for better backpacks to carry her in.

With Lucy as our inspiration, Aaron and I signed up with a personal trainer and started training with him 4 days a week. I felt silly doing it, I didn’t want to tell anyone because it felt so “Hollywood!” (Um, YES! I TOTALLY have a personal TRAIN-ER!)
But I wasn’t going to be stopped by feeling silly or cliché. My reasons were bigger than that. When Jared, the owner of the gym, and Matt, our trainer, asked what our goals were, Aaron and I said, “We definitely need to be able to dead-lift 50 pounds, over and over and over again. Every single day.” I said, “I don’t care if I lose weight, but I need to get stronger. We have to increase our overall strength because we have an 8 year-old in a wheelchair and every day she is growing. We have to keep up with her!”

Jared Trevino, who owns our gym, Fit Forever, offered to come to the house and watch how we lift and transfer Lucy. He watched us load her in and out of her car seat. Then we loaded her wheelchair in and out of our car. Next we lifted her from her wheelchair and sat her on her bed, then moved her back to the wheelchair. Then we transferred her to her feeder chair at the dinner table.

I set her on her back, in the bottom of the tub. I stepped in, straddled her and lifted her out, stepping carefully over the edge, one foot at a time, like I do when she has a bath. (A maneuver that is much easier when she is fully clothed and dry.)

We put her in her small wheelchair and “bumped” her up and down the stairs. We put her in her stander and then pulled her out of it.

Jared then showed us how to do each of those things with correct form, giving us more strength, more control, protecting our lower backs and protecting Lucy. We had been doing it all wrong… but only for the last 9 years. :)

Our trainer, Matt Williams, says that very few of his clients train as intensely as Aaron and I train. I wonder if many of them have as much at stake as we do. We are Lucy’s legs. We are the wheelchair, when the wheelchair says “No.”

When we workout on our own, people literally stop and stare. They stop us to say that they are inspired by us and that they can see our determination. They assume we are in training for a physical, competitive event like a triathlon or marathon. When they ask what we are training for I say, “I’m training for my daughter, Lucy, who’s in a wheelchair. I’m training for our life.”

Lucy is my motivation. When I don’t want to run, I still run… and I run… because I can run. She may never run, not in her whole life, and I just won’t take my ability to do so for granted. I push myself physically so I can carry her. So I can run with her. I do it, so I can be a “Yes.”

A couple of months ago, Lucy asked, “Mom, can just you and me go to Disneyland sometime? Just you and me. Not Daddy, not Leah.” (In my mind I quietly, nervously, calculated the number of times I would need to lift her. Then I told myself to “STOP IT!” And I told my daughter, “Yes.”

Welcome To DisneylandEverybody say "Dumbo!"

“Mom, can I hike through Goblin Valley?”
“Yep.”
Goblin Valley, Utah

“Mom, can we hike all the way up to Delicate Arch?
“Absoultely!”
Delicate Arch - Moab Utah

Let’s just say it… there’s quite a difference in my physical appearance from Signing Time Series 2 to Baby Signing Time 3 & 4. Actually, I have been all over the scale map from the first show to the most recent.
wo8i2478_2dsc_5411_2

Honestly, I’ve struggled with my weight my entire life and finally, finally I’ve found something that motivates me. A reason to push myself. A reason to really ask, “Is that all you can do Rachel? Are you sure?”
One word- Lucy.

A few nights ago I carried Lucy down the hall to get her ready for bed. I placed her on her bed, so that she was sitting up and leaning against the wall. She smiled at me and said quietly, “Mom, I can tell you’re getting stronger.”

And that’s the best reward of all.

Lucy Coleman

Back To School Blah Blog

Leah and Lucy went back to school today. Shouldn’t I be jumping up and down?

Leah was up at 7 AM and made the rounds, waking us all up. “It’s the first day of school!!” She whispered excitedly. I believe some kids are built for school, and Leah is one of them. She wakes up, makes herself breakfast, gets dressed, brushes her teeth and is on her way to the bus stop, even if the rest of us are still in bed! While in class, Leah hurries to complete each assignment so she can get back to whatever book is in her desk. She comes home, does her homework and then plays with friends.

Maybe the reason I am feeling so melancholy is that I am channeling Lucy. Lucy is NOT built for school, but please don’t tell her I said so. Most of mainstream public education was not set up for “the Lucy’s” of our world. I wouldn’t want to sit (literally) from 8:30-3:30, yes she sits at recess too. She cannot do the work as quickly as the other kids and it really does take more of her energy to complete the same assignment. She is always rushed and always behind. Sometimes she just puts her head down on her desk, refusing to do any more. And does everything really need to be signaled with a LOUD, jarring bell? The poor kid practically leaps out of her skin every 45 minutes… and then there are the fire drills… need I say more? I am actually going to send earplugs for her this year!

And it’s not just that Lucy isn’t built for school, but school is not built for Lucy. Since she is in a big wheelchair, she usually ends up at the end of the line, when her class lines up. Her new classroom is set up with 3 long rows of desks, each row behind the next. Lucy can’t maneuver in between a row, so she is at the back of the class. She can’t reach a sink to wash her hands, so I send hand sanitizer. She can’t reach the water fountain, so we send water bottles. She can’t get her bin out of her desk, hang up her backpack or get it down, write, feed herself or go to the bathroom like the other kids, so she has an aide, Sally who is incredible… Lucy would do better if she could have Sally as a full-time aide, since she struggles with transitions but the district refuses to pay benefits and retirement for one full-time aide, so Lucy will have two part-time aides. And like clockwork, every week on the day that the aides transition, I will likely get a note sent home saying, “Lucy had a really hard day, she refused to work and cried a lot.” If the district lived it, like we live it, they would pay benefits, retirement and more.

This morning, Leah was off to her bus stop by 8:10. The girls go to the same school but cannot ride the same bus. Leah rides the bus with all of the kids in our neighborhood. It is not an accessible bus. Lucy’s bus has a lift in it and it is also full of kids who have different disabilities who are not mainstreamed, who do not go to her school. Having kids screaming, hollering and jumping around doesn’t work for Lucy at all. She hates the bus. We have asked the transportation office if Leah can ride with Lucy. At first we were told, “No, Leah has to have a documented disability.” (“Huh? She does!) So, now Leah rides with Lucy sometimes, and like any kid, Leah wants to ride with kids she knows, kids she likes and kids who go to her school and understandably Leah doesn’t want to be late to school every day. Yes, Lucy’s bus gets her to school late and picks her up from school early EVERY single day. Schools make a big deal out of being late, but they wave it entirely when it is their fault, which may be fine in theory but would you want to be the kid in the wheelchair who rides a bus with no one you know, who arrives to school late every single day and sits at the back of the room? Sounds like punishment, not school.

This morning the driver called and told us she would be arriving at our home at 8:45. Lucy quietly said, “I don’t want to be late on the first day.” We loaded Lucy and her manual chair into the car and took her to school. We left the heavy power wheelchair for the bus driver to deliver later. This is all after Lucy refused to eat breakfast, forcing herself to dry heave when offered toast, smoothie, juice anything. She cried 4 or 5 times about nothing and everything and I can’t blame her.

Strong Enough To Be Your Mom

If you haven’t figured it out, there are a lot of things we love to do, we love the beach, we love to camp and hike. When Aaron and I were first married we talked about moving to Alaska for a year or moving to Hawaii for a year and we talked about how great those adventures and experiences would be for our family, when we had one. Aaron and I had checked out Kauai and looked into moving there when Leah was almost one. Shortly after Leah’s first birthday we realized that she was deaf. We still pursued Hawaii and talked to Easter Seals about early intervention. We would have to island hop for audiology exams, hearing aid issues etc. We asked if there was a deaf community and were told, “Yes!! There are about 14 people in the deaf community.”

Aaron and I shelved the idea, realizing some things may need to be put off so that Leah could have all she needed. When Lucy came along it seemed like her physical limitations might also limit some of our family activities. I hated the idea that there really is not enough accessibility in many places for her.

At one point, I made a secret promise to myself on Lucy’s behalf. I would never be the one to limit our activities because of her wheelchair.

As Leah shared in her recent post, we kicked off Summer with a family (and extended family) trip to Cancun. We left for Cancun the day after we got home from the Emmys in NYC. Cancun was great! Lucy parasailed with Aaron. We sat on the beach and played in the waves. Aaron went scuba diving, Leah snorkeled. Lucy does not like putting her face in the water and still struggles with controlling her breath so a snorkel for her could be disastrous. I came across an ad for a glass-bottom boat ride and I thought it would be perfect for Lucy! She could see the reef without getting her face wet! I called for more info and it sounded good. Very, very, very last, I told them I had an 8 year-old in a wheelchair. I was placed on hold for awhile and they came back and told me it would not be possible for us to go. The boat is not really a glass bottom boat, it is a submarine. We would load from the dock onto a speed boat first, and it would take us out to the submarine waiting in the ocean. We would have to transfer from the boat to the sub and then down a series of stairs to our seats below the surface. When the tour was over we would transfer back to the boat and then from the boat to the dock.

I hung up and thought about what they had said. There was no room for a wheelchair and we could not transfer the wheelchair. Could I do this myself? Could I carry her? Could I do it without Aaron? It would be scheduled on Aaron’s scuba day, which I KNOW he would cancel for Lucy – I kept my concern to myself. I tossed it around in my mind for hours. If Lucy knew I was concerned, she would insist she did not want to go anyway. Lucy is almost 50 pounds and I would be committing to carrying her for 5 hours and transferring her 4 times! I decided that I could do it. I called back and made our reservation, this time I didn’t say anything about a wheelchair.

The night before our submarine trip I dreamt that we arrived for the adventure. I was carrying Lucy on my hip. The guide looked at me and said, “Are you crazy? We have to walk 6 miles to the boat!” In my dream I frantically asked others if I could borrow their stroller for the 6 mile trek. I think that might qualify as a nightmare.

The day of the trip, my mom, my sister Emilie and her son Zak decided to come too. The tour bus picked us up from the hotel. Lucy thought it looked like an airplane inside. When we arrived there was a long line. Mom stood in line and I sat Lucy on the counter until we were up. We made the first two transfers and the sub ride was a blast! We saw sea turtles, schools of fish, coral reefs and so much more! The ride ended just in time, as most everyone felt a little sea sick. We transfered back to the boat without a hitch.

It may seem like a little thing, but secretly I was really proud of myself.