Have Wheelchair – Will Travel (the WORLD!)

“Was Lucy born in a wheelchair?”, one of her first-grade peers had asked me, and I imagined that ultra-sound image. “Well, it looks like you are having a baby girl and… Oh! Wait… Wow, you are also having a bright green Zippy… and I am sorry to inform you it has cambered wheels!” #ouch

When your child is diagnosed with a disability, all kinds of things go through your mind. When our one-year-old, Leah, was declared profoundly deaf, I immediately imagined all of the things she/we/I would never be able to do. Leah’s now 22, and honestly, I can’t think of anything that kid hasn’t been able to do, other than hear very well.

A few years later during a “routine” ultrasound, they discovered that our next little one, Lucy, had water on her brain and a “lemon mark.” Both were likely caused by Spina bifida. (It’s not SPINAL Bifida… ok? For whatever reason it’s “Spina bifida.”)

Spina bifida: open spine, some paralysis, shunt, multiple surgeries, she’ll likely never walk, wheelchair, leg braces, Dynamic Ankle Foot Orthotics (DAFOs), bowel and bladder issues… that’s the gist of it. Now you don’t have to Google it.

I don’t recall my exact words or thoughts upon hearing this diagnosis. Probably something like “ARE YOU KIDDING ME??? ARE YOU BLEEEEEEEEPING KIDDING ME???” I do remember thinking about the things that she/we/I now would likely never be able to do, wheelchair-in-tow.

Lucy was also diagnosed with cerebral palsy when she was 9 months old, and the list of things I no longer viewed as possible continued to grow.

Lucy’s now 18 years old. She attended mainstream high school and graduated last summer with a regular diploma.

The Happy Grad

Thirteen years ago I realized that I had made a lot of wrong assumptions about what was possible for my family, our travels, and our children. I had made up all kinds of things about what our future would be like… living life with children who have disabilities. I could finally see that I had been living in a way which proved those wrong-assumptions right. 

Now there was an opportunity to prove wrong my old ways of thinking!

If you you’re going to make something up… make up something awesome! 

Lucy’s first trip to New York City: The plane was landing at JFK airport and Leah looked at me with concern. “Mom? How are we going to get around New York City with Lucy’s wheelchair?” 

I had been struggling with that same concern for months. I answered her as honestly as I knew how, “Leah, I have no clue. We can’t be the first people to travel to New York City with a wheelchair, and we likely won’t be the last. We are going to work it out.”

Spoiler Alert: It worked out. Her wheelchair fit in the trunk of the taxis, and some taxis are fully accessible. There’s a phone number you can call to request an accessible taxi, and both Uber and Lyft now offer accessible services in many cities.

 The summer of 2014 Leah booked a school trip to Europe for 14 days. We rounded up our Delta Skymiles and Marriott Hotel Reward points and plotted out meeting up with her in London, traveling throughout Ireland, and ultimately enjoying July 14th, Bastille Day, in Paris! This was sure to be a vacation we’d never get over because of the sheer AMAZINGNESS… or because it was going to be an EPIC failure.

We met Leah in London where she said good-bye to her schoolmates and teachers.

Just to test myself, I made sure we travelled by plane, train, taxi, rental car, subway, bus, and ferry.

NOTE: Subway, train, and ferry have “handicapped rates” which apply to the person with special needs and one caregiver.

TIP: If a city has hosted the Olympics, it is likely to be more wheelchair friendly. 

Lucy’s manual chair allows us to “bump” her up or down the stairs if an elevator is broken. Every time we needed to go up or down a set of stairs, we had plenty of strangers willing to help.

We have not yet dared to travel with the 200-pound power wheelchair, and that’s the chair Lucy prefers. She has so much freedom, independence. and control with it. (I find it kind of creepy-comical when people refer to them as “electric chairs.” #zap)  

I just can’t image arriving by plane at our destination to find there is something very wrong with her power wheels, and then attempt to lug that 200-pound monstrosity everywhere, while physically carrying Lucy throughout a trip. I’d love input on that from any power chair users who travel domestically or internationally.

In her wheelchair, in a taxi, in London
The River Thames by Boat (jet lag is real)
Big Red Bus – up top!
High-speed train – I’m asleep!
Traveling by Ferry to Ireland – Leah’s out cold

Ireland was fantastic. We rented a car and drove ALL OVER! Every time we got in the car I reminded Aaron “Stay to the left! Stay to the left!” There were so many tiny streets and so many cars driving fast and the steering wheel was on the right.

Stay to the left! Driver on the right! Redbull to the rescue!
Pretty sure this is one-lane… oh, no. It’s two lanes.
Tulla, Clare, Ireland
The stuff of storybooks in Ireland
Unreal

After Ireland we went to Paris, France. Aaron’s birthday is July 14th. This date is also Bastille Day, which is Independence Day in France. If you are also a fan of the band RUSH… and you were born on Bastille Day, then you can maybe understand why in our 18 years together we had talked countless times about spending Bastille Day in Paris “someday.” 

TIP: “Someday” doesn’t actually exist. It’s a way of putting off your dreams indefinitely. Hey, since it’s January 1, 2019 how about creating a New Year’s Resolution to actually DO one of your “somedays!”

Step 1: Open your calendar, get out your wallet, and make one of your “somedays” obsolete.

Step 2: Forever remove “someday” from your vocabulary.

Step 3: You just made 2019 a year to remember! #yourewelcome

Bastille Day, 2014 – Paris, France: We bought some wine, some meat and cheese, plus chocolate, and a few baguettes… like you do when you are in Paris! Then we found a spot with a few hundred-thousand other people, with a great view of the Eiffel Tower. We sat in the street eating, talking, and laughing as the sun set.

Have baguette, will travel

That could’ve been enough. I could end this happy tale right here… But then, something really amazing happened.

The sky was dark. John Lennon’s “Imagine” started to play, and tears started to fill my eyes.

Eighteen years ago we talked about this day. For eighteen years, we imagined this very moment. I cried because we did it! We actually did it! And then, I cried harder, because DAMN we just did so much more than what we ever imagined would be involved in this adventure. Back in 1996, when we first talked about spending Bastille Day in Paris, we didn’t even have a deaf child, let alone a child with a wheelchair.

That night in Paris, I looked back over our eighteen years together and I cried because I was really proud of us! Our real story was so much better than anything I could’ve imagined.

Was it too perfect? The fireworks started and in one movement the entire crowd rose to their feet.

The Eiffel Tower explodes with fireworks!

…And that movement blocked Lucy’s entire view, but what could I do? Fireworks. Music. A celebration. So many people!

Then, I heard something.

People around us start saying what sounded like “Ah-see! Ah-see!” They were tapping each other and pointing back to Lucy saying it over and over. I watched it spread like a wave from Lucy moving toward the Eiffel Tower… Tap, tap – point to Lucy – “Assis! Assis!”

Then, everyone who had been standing in front of Lucy, sat down!

I am not making this up! They all sat back down so one little girl, who was sitting (“assis”) in a wheelchair could see the firework display at the Eiffel Tower.

In that moment, the universe delivered something for which I didn’t have the words to ask… especially in French!

Cue all the tears!

Bastille Day, Paris France, July 14, 2014, Aaron Coleman’s birthday, and a great RUSH song

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

Late Night Phone Call

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 🙂

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.