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

Babies, Buddy Walks and Blogs

It’s that time of year again… the time of year when my siblings and friends have a ton of babies all within weeks of each other! I know. Weird! It’s also the time of year called “fall” and that means I am galavanting around the country with colors on my fingers and singing and signing with some of our most devout Signing Time Fans… because it’s ALSO the time of year for Down syndrome awareness walks!

WAIT!!! — remember what happened last time everyone I knew was going into labor and I was performing at Buddy Walks?

I remember.
It was 2008.

It started with Baby Asher then came Baby Ryan and even Baby Carter came along too! (But he was born in Georgia… SO far away from me)

The grande finale was Rachel & Natalie’s Excellent Adventure in the midst of all of that I went to Oklahoma, Oregon, and Denver… and then… then Leah’s hat caught on fire.

Oops!

Well, that was 2008.
…And this is 2010

My sister Sarah had Baby Oslo

weeks later my sister-in-law Danielly had Baby Zoey.

A week later my sister-in-law Katie had Baby Brody. (They are in Las Vegas, so I don’t have a photo of Lucy holding him… YET.)

And for the GRAND FINALE… my sister Emilie, yes THE Emilie, had a baby girl on September 20th!!! (a little girl who is yet to be named, but big deal, they didn’t name Alex for three weeks and he turned out all right)

I’m happy to report that Baby Girl Brown attended her first Signing Time Owner’s Meeting yesterday. I held her while Emilie and I held the meeting with others via Skype. Being the boss is boss!

I was able to be at all of the births I was scheduled to be at… and likewise I was not at the births I was not expected to be at… that’s how birth should be.

In the meantime… here is my Down Syndrome Walk schedule 🙂 I already performed in Salt Lake City… and New York City… you were either there or you missed them. Either way you can see photos of the SLC event on my Facebook Fan Page and you can see NYC photos there as well. This weekend I head to Fox Cities, Wisconsin and the following week I will be in the Boston, Massachusetts area.

We have created Team Signing Time for each of the events this year so all of you Signing Time Families can hang out, get freebies and walk together.

Utah Down Syndrome Foundation Buddy Walk
When: Saturday, September 18 at 11:30 a.m.
Where: West Valley Cultural Celebration Center, located at 1355 West 3100 South just off Redwood Road
You weren’t here, but we were!

Rachel Hopkins and Leah

If you weren’t there, then you missed THIS magical moment:

Caterpillar Dreams - Lucy

The National Down Syndrome Society Buddy Walk in New York
Team Signing Time NEW YORK
When: Saturday, September 25, 2010 at 1:00 p.m.
Rachel will perform at The Great Hill, Central Park, New York City

Team Signing Time NYC

You also missed this magical moment…

Darth Vader's Angels

Wisconsin Down Syndrome Awareness Walk
Team Signing Time WISCONSIN
I will be giving a keynote address on Friday, October 1 at 6:30pm at Elks Lodge No. 337
(1103 W College Ave, Appleton, WI)
I will be performing at The Awareness Walk on Saturday, October 2, 2010 at 1:45pm at Riverside Park, Neenah, Wisconsin

The Massachusetts Down Syndrome Congress Buddy Walk
Team Signing Time MASSACHUSETTS
Where: Buddy Walk at in Wakefield, MA at Lake Quannapowitt
When: Sunday, October 10, 2010 at 12:00 pm