Rachel Coleman

“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? Then put the headphone back in place. This infuriates Lucy all the more. She takes it up a notch from ear piercing to shrill. All the while at top of her lungs.

People throughout the plane are shooting hateful glares and glances our way. I can hear their helpful advice, “If that were my child, I would smack her!” Do you know how much self-restraint it takes to keep from throttling her? Do you? I put her in one room and I go in another room and I cry. I don’t know how to break her. In so many ways, she’s already broken. What’s left to take away? “That’s it! No walking for you!”

I’m sure the people on the plane were questioning my parenting skills. Hey, let’s be honest- I question my parenting skills. No one has ever had a “Lucy” before and she didn’t come with a manual. “What to Expect When You’re Expecting” didn’t include anything about fetal surgery for spina bifida. I threw that book away. “What to Expect in the First Year” had nothing about a child who screams for their first 9 months, almost dies in your arms and has sensory issues that cause her to startle and cry like a newborn until age 7. She has managed to knock out the cry now, but the startle still sends her reeling. She’ll tip right over if we cough without warning and with the cold and flu season escalating, there is no safe place for this child. Oh, please don’t exclaim in front of my child, happy- “WOW!” sad- “SHOOT!” or otherwise. You’ll see the startle, then you’ll apologize for it, just drawing more attention to the thing she can’t control. She gets embarrassed and the whole thing snowballs. “Just keep swimming. Just keep swim-ming.”

“How old are you?” The question from the woman in the aisle, leaning in over Leah, surprises Lucy and Lucy shuts her trap and tucks her chin in embarrassment. This must be my guardian angel! I half wonder if Aaron enrolled her in helping me out, sending her from the back (he didn’t). I smile at the woman. Lucy won’t answer. “She’s nine years old!” I draw it out, grinning.

“Nine? You are nine? I was pretty sure that noise was coming from a child who was only two or three years old… you are nine?” Her voice was more stern than angry, but tinged with a tiny bit of compassion… tiny… or maybe she was just tired. “Do you realize you are acting like a two-year-old?” The stranger continued, Lucy still doesn’t answer and doesn’t look up. “There’s an entire group of us in the back of the plane, we are all tired and trying to sleep and you are REALLY disturbing us. The noise is unbearable and the entire plane can hear you. You need to stop this nonsense and be nice to your mother.”

I smiled at the woman. I was really thankful. It takes someone else, someone Lucy doesn’t know. There is nothing I can say to stop her. Besides, she’s heard it all from me a million times before.

The woman returned to her seat. Lucy looked up at me and said, “I’m ready to finish my homework.” We finished both pages and for the remainder of the flight, 3 hours, Lucy was absolutely pleasant.

“Did you send that lady up to save me?” I asked Aaron after we landed in Phoenix. “No! I saw her get up and talk to you guys. What did she say?” I replayed the encounter for Aaron, who, like me, smiled.

We made our way through the terminal. Found our gate and plopped down. Quite some time later, the woman from the plane showed up and sat on the row directly behind us. I didn’t notice, until Aaron said, “I guess you didn’t get enough of us on the plane!” She turned around and looked surprised.

Then she started, earnest, but hushed, so Lucy couldn’t hear her, “I am soooooooo sorry! I shouldn’t have said anything. After I sat down, I saw you guys signing and I realized that maybe the little girl was deaf and then when you got off the plane I saw that you put her in a wheelchair!!! …And I thought, ‘Oh great! I am going to Hell!’- I should have kept my big mouth shut!” I stopped her, “No. No. I was SO glad you said something. I actually thought my husband sent you up to save me! No one ever says anything! They don’t dare say anything! They look at us like they hate us, but they don’t say anything. The flight attendants see us board with the wheelchair, so they don’t even say anything because they KNOW she has disabilities.”

Once, a flight attendant actually got into it with a passenger who had turned around and “SHHHHHushed” Lucy! That flight attendant started hollering, “That child has disabilities, you don’t treat her that way!” and the passenger shot right back, “I’ve worked with kids with disabilities and THAT child knows better!” And mostly, I just wished a hole would open in the plane and drop me out somewhere far below the two strangers arguing over my child’s deplorable behavior…

“But you were right,” I continued, “there is no reason for Lucy to act that way, disability or not, it doesn’t work. Clearly it doesn’t work for anyone on the plane!”

I gave her the short version of The Traveling Coleman Family Circus- Leah is deaf. Lucy has spina bifida and cerebral palsy. We all sign. Lucy seems to have some sensory issues, caused by cerebral palsy; her nervous system seems underdeveloped in some ways, even though she has a completely capable and brilliant mind. No, there has not been an official diagnosis other than CP and spina bifida, no, I don’t know if there is medication that could reduce Lucy’s sensitivities. And thank you again for having the guts to say something!

We boarded the next flight, heading home to Salt Lake City. This time I was flying with a plan. Aaron was far behind me getting Lucy out of her wheelchair and gate checking it. I knew Lucy was safely out of earshot, “Excuse me…” I said to the woman just ahead of me in the aisle, “Hi there, ummm… this may sound odd, but I was wondering if you’d do me a favor… If my child starts acting like a turd, would you please come over and sternly ask her to cut it out? Thanks.”

I was up late last night, very late.  Marcus, who does wardrobe on Signing Time, stopped by with my clean, steamed orange outfits close to 11PM.  I could not really pack until after he got there and I didn’t really pack after he left.  Marcus wants me to blog about the many wardrobe secrets of Signing Time.  (Sigh)  I just don’t know if I dare!  Not that you want to know the potential wardrobe malfunctions, so you are looking for them, but I am sure I could save you some wardrobe malfunctions of your own.  If you bug me about it enough I might just give in.  Or maybe we should have a wardrobe chat, like the sweater folding chat which was followed by the sweater folding blog.  

Like I said, it was still very late and I hadn’t packed.  I was on my computer doing all of the important things that just can’t wait until tomorrow, when you have an 11AM flight.  Plus, as I became more tired, I lost the ability to complete a task with velocity and finally could not complete a task at all.  Eventually in a sleep deprived, groggy state, I had that jarring, recurring thought… “Is my cell phone ringer off?”  (If you have read any of my posts in the past two weeks, you can understand why this makes my heart pound!)  I located my cell phone and the ringer was off, I turned it on and there were no calls. This was around 4:30AM.  I thought about plugging it in to charge and then I paced a few pointless circles in my kitchen, noticed all of the lights were on in the kitchen and dining room and then… my home phone starts ringing.  Just so you know, no one calls my home phone during daylight, so it is even more rare for it to ring in the middle of the night.  I fumbled through the sofa cushions and found the cordless phone.  ”Hello?”  I said nervously, thinking to myself, ”I have never anticipated someone’s reply more than right this second.”  

“Hello.  I am calling for Rachel de Azevedo,” said the woman on the other end of the line.  

“That would be me.”  I respond quietly and intently. 

“Ms. de Azevedo, (of course she slaughters the pronunciation of “de Azevedo”) this is Erin, I am an agent with Delta Airlines.  Your 11AM flight tomorrow has been canceled and you are now departing tomorrow at 9 o’clock PM.”  I asked her some random pointless questions, like “When was it cancelled?” and “Why didn’t I know sooner?”  As if that matters, but it was 4AM and I was half horrified I was going to have to try to get a first time baby delivered in the next 5 hours before a flight.  THAT is PRESSURE!  

The moral of the story is, sometimes you CAN have your cake and eat it too!?  And the other moral of the story is that procrastination can pay off!  Ok, neither one of those is the moral of the story and I am obviously very tired and thankful that I can still pack, take a nap, see my kids when they get home from school, AND fly to Oregon tonight!    

As promised, here is my nephew Carter who was born yesterday.

And I am working to get Twitter up on my blog so that I don’t have to commit to an entire blog every time the phone rings in the middle of the night.  Or when Lucy chooses to run for student council and yesterday she gave the speech to her class, that went like this,

“Hi!  I am Lucy Coleman.  If you have any questions about the school, I am willing to answer them.  Vote for me!”  

And then, she won!!  See, with Twitter you will get all of that and so much more

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.