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

Anyway, last summer in Mexico I found an advertisement for a glass bottom boat. I thought it would be perfect for Lucy, because she is not a fan of putting her face under water. She has dysarthria<--- which came along as a sidekick to cerebral palsy<--- which came as a sidekick to spina bifida (Thank you very much).
Because of her dysarthria, snorkeling does not work for Lucy. It is tough for her to get her body to either breathe through her mouth or her nose.

I asked Lucy if she would like to see the fish, but do it in a boat and not even get wet! She loved the idea. I called the company to make the reservation. I asked them about wheelchair accessibility there was none. A bus would pick us up and take us to the main location. We would board a speedboat and it would drive us out to a small submarine. Then we would transfer onto the sub go down a tight spiral staircase to our seats below!

No wheelchair. Not for any of it. We would be gone for at least 6 hours.

Could I do it? Could I carry all 40+ pounds of her? Could I carry her as I exited a boat, out in the ocean, and hopped over to a sub?

Was I strong enough to bring her to new experiences? Or because of my lack of physical strength was she literally “bound” to her wheelchair? Was I strong enough to show her the world beyond sidewalks and ramps? The worlds of dirt and gravel and sand and water and beauty? What would she think of me if I failed her? Worse yet… what would I think of myself?

My nightmares the night before included being dropped off with her in the desert, with nowhere to rest, nothing but sand, sand dunes and smooth rocky hills. After hours in the hot sun, moving her from piggy-backing to a side carry, to baby-in-arms hold, I frantically looked for anyone who might have a stroller. Even in the deep sand a stroller would give me a little rest and we could still slowly move forward. I moved her to my back as we bouldered across mountains of rock.
When I woke up I was exhausted, soaked with sweat.

That was a year ago.

I was able to hold her as we stood in line, transferred to the boat, transferred to the sub and back to the boat. We had a great time together and I don’t think my daughter ever knew my fear… my fear that I would let her down. The fear that I might be just one more “No!” in a world full of people, who throughout her life, will simply look at her and tell her, “No.”

Something changed in me that day. I began working out harder at the gym, running faster and farther. I looked for better backpacks to carry her in.

With Lucy as our inspiration, Aaron and I signed up with a personal trainer and started training with him 4 days a week. I felt silly doing it, I didn’t want to tell anyone because it felt so “Hollywood!” (Um, YES! I TOTALLY have a personal TRAIN-ER!)
But I wasn’t going to be stopped by feeling silly or cliché. My reasons were bigger than that. When Jared, the owner of the gym, and Matt, our trainer, asked what our goals were, Aaron and I said, “We definitely need to be able to dead-lift 50 pounds, over and over and over again. Every single day.” I said, “I don’t care if I lose weight, but I need to get stronger. We have to increase our overall strength because we have an 8 year-old in a wheelchair and every day she is growing. We have to keep up with her!”

Jared Trevino, who owns our gym, Fit Forever, offered to come to the house and watch how we lift and transfer Lucy. He watched us load her in and out of her car seat. Then we loaded her wheelchair in and out of our car. Next we lifted her from her wheelchair and sat her on her bed, then moved her back to the wheelchair. Then we transferred her to her feeder chair at the dinner table.

I set her on her back, in the bottom of the tub. I stepped in, straddled her and lifted her out, stepping carefully over the edge, one foot at a time, like I do when she has a bath. (A maneuver that is much easier when she is fully clothed and dry.)

We put her in her small wheelchair and “bumped” her up and down the stairs. We put her in her stander and then pulled her out of it.

Jared then showed us how to do each of those things with correct form, giving us more strength, more control, protecting our lower backs and protecting Lucy. We had been doing it all wrong… but only for the last 9 years.

Our trainer, Matt Williams, says that very few of his clients train as intensely as Aaron and I train. I wonder if many of them have as much at stake as we do. We are Lucy’s legs. We are the wheelchair, when the wheelchair says “No.”

When we workout on our own, people literally stop and stare. They stop us to say that they are inspired by us and that they can see our determination. They assume we are in training for a physical, competitive event like a triathlon or marathon. When they ask what we are training for I say, “I’m training for my daughter, Lucy, who’s in a wheelchair. I’m training for our life.”

Lucy is my motivation. When I don’t want to run, I still run… and I run… because I can run. She may never run, not in her whole life, and I just won’t take my ability to do so for granted. I push myself physically so I can carry her. So I can run with her. I do it, so I can be a “Yes.”

A couple of months ago, Lucy asked, “Mom, can just you and me go to Disneyland sometime? Just you and me. Not Daddy, not Leah.” (In my mind I quietly, nervously, calculated the number of times I would need to lift her. Then I told myself to “STOP IT!” And I told my daughter, “Yes.”

“Mom, can I hike through Goblin Valley?”
“Yep.”

“Mom, can we hike all the way up to Delicate Arch?
“Absoultely!”

Let’s just say it… there’s quite a difference in my physical appearance from Signing Time Series 2 to Baby Signing Time 3 & 4. Actually, I have been all over the scale map from the first show to the most recent.

Honestly, I’ve struggled with my weight my entire life and finally, finally I’ve found something that motivates me. A reason to push myself. A reason to really ask, “Is that all you can do Rachel? Are you sure?”
One word- Lucy.

A few nights ago I carried Lucy down the hall to get her ready for bed. I placed her on her bed, so that she was sitting up and leaning against the wall. She smiled at me and said quietly, “Mom, I can tell you’re getting stronger.”

And that’s the best reward of all.