How Slow Can Jaycee Go?

"Can we go any slower?"

I ignored the comment directed at me. As I meandered my way through a roped maze that led up a flight of stairs and to the top of a water slide, I knew the teenagers behind me would like to move faster. I am sure they saw was a thirty-something year old woman carrying a two man raft on her head wondering why she was walking at a snail's pace. Directly in front of me, they probably couldn't see Jaycee. If they did, they couldn't see that she had Down syndrome. They definitely didn't know she normally walks with AFOs on her feet and has low muscle tone and health issues, all of which makes her move slower and tire easily.

The question lingered in my head. "Can we go any slower?"

Yes, actually!

This was our second trip up the water slide which I chose because it had the least amount of stairs and walking. Even though I put on a brave face, I worried how Jaycee would react. She enjoys these types of rides, but the heat in combination with the stairs and walking has taken its toll on her. I knew at any moment Jaycee could sit down and refuse to move. I knew this because it happened the day before.

Just before we decided to leave the water park on that fateful day, my husband suggested we do a bigger water slide that had several flights of stairs to climb. There was also a long line of people on those stairs. I saw disaster written all over this plan. It was the end of the day, so she was tired. Hey-even I was tired. The long line meant we would probably be waiting a good 45 minutes, which was a very long time for Jaycee. I am not going to lie, we had a blow up over the decision to do this water slide. I didn't want to do it because I knew Jaycee couldn't handle it. My husband thought it would be fun and told me not to let fear prevent us from trying. I may have yelled at him, and he may have yelled back. But, I finally (and angrily) decided to give into his demand after he agreed to deal with her behaviors.

Within minutes in the line, Jaycee was aggravated and confused. She sat down and refused to move momentarily over and over again. I could feel my anxiety rise up as we were now boxed into this line with no easy way out. That's what I wanted to do at that point, exit the line. I watched as my husband lifted and talked Jaycee through each start and stop the line made. I wished he would have said this was a bad idea so we could all leave the line, but he never did. I tried not to look around at people behind us watching my husband and Jaycee fight for every step to the top of a long water slide. I wondered what the spectators to this bizarre line wrestling match thought as they witnessed Jaycee drop to the ground again and again. I wanted to shout to the heavens when we reached the top. Because, we did reach the top. It wasn't a mountain, but it felt like it to us.

The three day vacation at a theme park was full of decisions like this. Can Jaycee handle this? Will this cause a meltdown? How will she react if we do this? Having been to this place before, we knew some things were no problem. But, we got brave and tried different rides and water slides. Each time, my husband and I watched Jaycee looking for clues as to how she felt. We took turns offering her explanations of how lines work and why we just can't run ahead. We encouraged her to keep going even if she felt a little tired.

So there I was bravely taking Jaycee by myself through that maze of a short set of stairs to the top. I ignored the girl who wondered if Jaycee could go slower. If she only knew, this slow pace was actually a big achievement for her. I was proud that I had did this by myself not once but twice. I decided to let the comment go and focus on my daughter. Three months ago, Jaycee was sick in the Intensive Care Unit and today she is very slowly walking up stairs for a water slide. I know what's important, and that girl's comment was not.

Jaycee and I on a ride that required no stairs to get on it.

PS-
If you are wondering, my husband and I made up once we reached the bottom of the water slide.

When I Wish We Were Chameleons

Sometimes, I forget things.
I forget that Jaycee looks different.
I forget that her riding in a stroller is an odd sight for other children.
I forget that her tongue is out of her mouth most of the time.
I forget that she often makes weird noises.

But, then I'm snapped back into reality and I can no longer forget.

We just took our camper out for the first time last week. We spent months waiting for school to end to have the time to take our first trip. The kids were excited. They each claimed a bed in the camper months ago and were ready to go.

The first trip out went pretty much how you would expect your first trip to be. We were about 6 feet short of reaching the water hook up. I was short two blankets and one set of sheets. Nothing major went wrong thankfully.

My husband happily cooked on the campfire. Jaycee tried s'mores for the first time, which she absolutely loved! Then after dinner, we decided to head to the camp playground. It wasn't a long walk but Jaycee's feet were covered with blisters, so we let her ride in her stroller over to it.

As soon as I wheeled her on the playground, a group of very inquisitive children ranging from 4 to 12 years old approached us.

"Is she hurt? What happened?"

Followed by, "Does she have autism? My brother has autism. He's in special education."

I replied, "No. She has Down syndrome." I had never been asked if she had autism before. That was a new one!

Then the youngest in the group asked, "Why is her tongue hanging out of her mouth?"

"It just does."

"Can she talk?" was his follow up question.

I gave my patent answer, "She can say a few easy words like mama or dada but she mainly signs or uses other ways to communicate. Her mouth just doesn't work right."

"Why not?" asked the boy.

I didn't have the energy to answer him. At this point, I was trying to back away from this nice but talkative bunch and work my way to an empty bench. Finally, they left me alone. They tolerated Jaycee's presence on the playground but the children were discussing her Down syndrome and noises among each other.

Then the strangest comment that I have ever heard from a child's mouth about Jaycee happened: "She can't help it. She has Down syndrome. A lot of people die from that!"

"I'm ready to go," I whispered to my husband.

He told me to relax, to remember that they were just children, and that they were just asking questions. He was right.

But, these are moments when I wish we were chameleons. I just want to blend in with everyone else. I don't want to be noticed. I don't want to be questioned about our family differences.

I wanted to go on our first camping trip just like any other family. I wanted my kid to climb a ladder and go down a slide without stares and comments.

There are places where we are chameleons, however. Jaycee is a chameleon at school where everyone knows her and understands her. At events like Special Olympics or Down syndrome walks, we blend in. At the church we have attended for the past 4 years, we are chameleons even when she's standing in the parking lot screaming. At our local gas station, we are chameleons even as Jaycee races to the juice cooler and back to the counter cutting off anyone who may be standing in line.

I'm thankful for these places where we feel like everyone else. It makes the times when we aren't chameleons much easier!

Jaycee's first s'more. She loved it!