I’ve said it before, books like “What to Expect When You’re Expecting” were not written for me. I don’t think they covered fetal surgery in there. Their follow up, “What to Expect in the First Year” was also a total FAIL in my life. There should be a line of parenting books called, “Hang On For Dear Life!” or “When You Least Expect It… Life is Going to Come Along and LIFE You! (So Expect It)”
Okay, okay those are just working titles. The bottom line is when you have one of those kids that meet NONE of the milestones it can be… oh let’s see, where should I start? “Exhausting” is the first word that comes to mind, followed closely by “frustrating” and “disappointing.”

One of my children wasn’t talking or babbling by age 1 (because she was deaf and we hadn’t figured it out yet) and one who… sat up for the first time at age 3. Took her first steps at age 4. Can move a small game piece around the board without knocking everything over at age 10!

But hey, we get to celebrate and we do celebrate the little tiny things that other people might just miss or take for granted. Nothing is tiny around here. Every accomplishment just about brings me to tears, or at least gives me material for a new song:)

There’s this thing that happens, a sense of loss, like I’m giving up on something, for example~ Lucy’s first wheelchair. I cried! I cried and cried! It was an adorable KidKart! Really adorable and functional but, it was moving my 2 year-old from an unassuming stroller to a handicapped device. She wasn’t going to blend in any more. I felt like I was giving up on the possibility of her ever walking. (Why so personal Rachel?) I wasn’t giving up at all; she has spina bifida and cerebral palsy. Perhaps it’s just watching the future I thought I was going to have, clearly change course.

First Set of Wheels

I had a similar feeling when we found out that Leah was profoundly deaf and we realized that ASL would be best for her. It felt like we were giving up on the possibility of her ever learning to speak. So crazy! Why couldn’t it occur that we were giving her a language that she could be successful with? And why was it still about ME?

It has to be some default reaction, some programming or wiring… and the bottom-line is it most often feels like- “oh, they aren’t going to be like me?” Like I have got it so good? “Just like me” is the benchmark? Silly.

I thought I would start a new category here on my blog: “Unanticipated Milestones” I’ve heard from many of you recently dealing with those first wheelchairs and first hearing aids. Hey we just got our first accessible bathroom installed in our home and a few other cool things, that I never thought I would grow up and have, let alone need.

So, to celebrate: here is the bathroom renovation! I wanted it accessible, but not ugly or sterile looking. Aaron did the whole tear-out and moved all of the plumbing, he put it all back together again, installing a pocket door and painting. The guy is a rock star. He did not set the tile, grout, or mud and sand, he wanted to make that clear:) Also I didn’t take a good “before” picture, but imagine white laminate counter top across the entire wall, and an industrial utility sink… classy, I know.

He is NOT afraid to use that

He takes it down to the sub-flooring, has taken the toilet out… and is tearing into walls. Was I nervous… nah.

Who needs a toilet anyway?

Down to the studs? What a stud!

Wires and pipes and splinters oh my

Is that a blow torch? I had no clue we had something like that!! Does it work for crème brulee?

I was beyond impressed at this point

Photo shot through the new pocket-doorframe. You can see the new sub-flooring and all the plumbing is ready. I for one think it takes a brave man to move a toilet! (And a brave woman to let him)

Putting it back together again

Accessible sink and painted wall. The electric outlets have been moved. Aaron changed the light switch to a rocker panel, and he moved and lowered its location so that Lucy can reach.

Installed the sink to work with Lucys wheelchair height

Tile backsplash around the sink.

And the end result! TA-DA!

Lucy now has a place in our home where she can wash her hands… Oh the things we take for granted.

Bathroom Renovation Design for Lucy by Brian Clark Designs

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!”

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.