Rachel Coleman

Ok, I just HAD to vent share.  Tuesday afternoon Lucy’s bus arrived.  Her bus driver is an older man and his assistant is his wife.  I have to guess they are in their late 60’s maybe early 70’s.  Their job (every day) is driving the bus that carries kids with special needs.  They have been doing this for years.. I don’t know how many years.  So, the bus pulls up, they unfasten the straps that hold down Lucy’s chair and Lucy drives her powerwheels to the door and is waiting for the ramp to come down.  The bus driver, let’s call him “Mr. B” is standing outside of the bus and is ready to drop the ramp so Lucy can pull up… the point is Lucy, Mr. B and I are all within 3-4 feet of each other and Mr. B says loudly, “So, what’s Lucy’s problem?”  

My first thought, was “Oh crap, what kind of problem did she have on the bus today?”  I looked at him searching for more info and realized he was actually asking something else.  I think I blinked a couple of times and my head shook – yep, I did a double take and said slowly, “Oh!!  Do you mean, ‘Why is Lucy in a wheelchair?’  and ‘What are the physical issues she lives with? and “Would I mind sharing about Lucy’s disabilities?’”  I looked at Lucy and smiled and winked.

“Yes!” Mr B. answers.

 ”Well,” I said, “Lucy has spina bifida and cerebral palsy.”

And in response to that, Mr. B throws his fists down and hollers, “That is TERRIBLE!!!!”

I am pretty sure my eyes widened with horror, because that’s what happened right now as I typed it.  I looked back at Lucy who seemed a little confused.  She may have been asking herself, “IS this THIS terrible?  I had no idea it was terrible!  Am I terrible?”  

I smiled again at Lucy with another, “Let me handle this” wink and I said to Mr. B, “Actually it’s really not terrible, it’s not bad at all.  Lucy is a brilliant little girl and she has a pretty incredible life and her wheelchair  is just how she gets around.”

Mr. B’s wife was standing at the door and it was clear she agreed with Mr. B, with antics like throwing her hands over her face when I said, “spina bifida and cerebral palsy” and letting out big breaths of air like she could hardly believe what she was hearing.

Lucy was being lowered on the ramp, almost touching down to our driveway and Mr. B says, “Well, seems like all that doesn’t really affect her brain.  Her brain works fine doesn’t it?”

“Yes, Lucy has a great brain, she is very smart and understands everything.”  I think he missed my emphasis there.  I think he missed a lot of my re-wording as well.  When Lucy cleared the ramp, I hugged her close and whispered, “Maybe we should get you a t-shirt that says, ‘What’s YOUR problem?’”  Lucy giggled.

As the bus drove away Lucy and I were able to share a moment and have another conversation about how many people just don’t know how to ask what they want to know, without sounding like a knucklehead.

And this is our life, re-wording things that others say in hopes of modeling less-insulting, non-labeling conversations in hopes of maintaining, if not building my little girl’s self-esteem.

No Problem Here!

I would love to hear your best and worst stories.  Did someone say something unbelievably sweet, rude, insensitive or adorable?  What do you think is the best way to ask these questions?  Even I get all weird and nervous when I want to ask someone why they are in a wheelchair.  Will they be offended and say, “I’m in a wheelchair because I can’t walk!”  

And I hate it when people stare and don’t ask anything.  Lucy is the stare magnet right now, everywhere we go people stare at her.  So, we figured the best way of dealing with it is this- Lucy looks right at them smiles and says, “Hi there!”

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.