That Child Screaming on the Plane… is Mine

“Excuse me. How old are you?” The woman’s question broke through Lucy’s screams. We had boarded the plane, found our seats and begun doing homework, at Lucy’s request. Luce was in the window seat; I was in the middle, and Leah on the aisle. Aaron was seated a handful of rows behind us in the emergency exit row. Most planes don’t have the legroom for a guy who is 6 foot 5. I have my own complaints, like, my feet don’t reach the floor, my legs swing like a toddler, and by the time we land my knees hurt and my feet are swollen, but that’s nothing compared to flying with your knees smashed against the seat in front of you. (So I hear)

We were finishing up math, only 2 pages left of a week’s worth of homework. This was our flight home from Cancun and the last chance to wrap it up before she returned to school tomorrow. We did the first problem together. Lucy was doing the math, I was writing in her answers… and then… well, to be completely honest, I have no idea what set her off. “What makes Lucy cry and scream?” < ---that my friends is the million dollar question. Something happened… or maybe nothing happened. Someone coughed? Cleared their throat? Slammed a door? A baby cried? The wind changed? Everything. Nothing. The tirade began. Ear piercing, high pitched, screaming, that went something like this, “I HATE YOU! YOU NEVER HELP ME! YOU’RE STUPID! STUPID! YOU’RE A TERRIBLE MOMMY! YOU NEVER LISTEN TO ME! I HATE Y-OOOOOOOOU! (Repeat, non-stop… for 45 solid minutes) She started her rant before they closed the airplane door. She continued through the safety announcements and hadn’t let up by the time we were allowed to use electronic devices and were free to move about the cabin. 10,000 feet of screams. There is nothing I can say to stop her, no threat. No look. No words. My response or reaction just makes it escalate. I put on my sunglasses and my headphones and am surprised at how the music drowns out my daughter’s screams. I pop one headphone out and announce loudly, “I hope you all brought headphones!” What else can I do? Continue reading

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.