Lilli

Lilli

Sunday, April 30, 2017

Attempting RV Camping - Part 4: Realizations, Meeting Another Lilli, and Coming Home


More Gifts Than We Realize


After the sun rises over the ocean and we've walked along the beach for awhile, talking and holding hands, Chloe and I head back to the campsite.

We sit at our picnic table to enjoy coffee and hot chocolate together. As we sip and chat, a friendly, grandfatherly man walks by with a little girl. He stops and waves to us with a smile. 

"I see you have the best campsite for wifi in the whole campground!" He tells me.

"What? Really? It's not that great, but it's ok," I say with confusion.

"Oh, but your campsite is the closest one in the whole campground. See, the wifi is on top of the bathrooms." He points.  "Before you arrived, everyone was sitting at your picnic table here trying to get online."

I didn't know. I thought everyone had the spotty wifi. He tells me that most of the sites don't even get the wifi at all.

Isn't that just life? We never truly know how good we have it until someone else tells us.

The man smiles and goes on his way with the little girl. I turn to Chloe and say, "See Chloe? God always works out the details. Here I spent so much time worrying about Lilli and the wifi and her being happy here. God picked the campsite with the best wifi for us and we didn't even know it."

Our camper. Next to the bathroom with the wifi, that white thing up on the roof. Can't get much closer.

And He really did. He saved that spot just for us, because the way we even got that campsite was just silly.

We did the whole trip planning backwards.  The dumb, I don't know what I'm doing way. First, I rented the RV for the dates we knew we would do this little adventure. But then I tried to figure out where we would go with the RV. I asked around, did a little searching. I thought we would go to this little campground near the beach. I looked on the website in early March to make a reservation, and it said that they only took reservations until the middle of April. Right before our April dates.

Hmm, that's weird, ok, I'll just check back in a few weeks, I thought. And then I just put it to the side and kind of forgot, because we had a bunch of other stuff going on.

A nurse supervisor came out for her monthly visit to make sure things were going ok with Lilli's care, and during the course of conversation I told her we were going camping in an rv, but I didn't know where we were going yet. I told her about the one place I had been thinking of.

"OH I LOVE it there!" She exclaimed. "I have friends who go there every year, and they have to make their reservation over a year in advance so they can get a spot."

Really? A year? I think I messed up here somewhere, I thought to myself.

After she left, I went back to the website. 

Oh. 

I didn't see the year part. 2018. They don't take reservations past April 2018 of next year. 

Quickly I scanned the dates we were planning to camp (in 2017) and I was immediately dismayed. Completely booked. I'm such a dummy. Duh, who rents an rv and tries to get a good spot at the beach in a few weeks. I did not know about this year in advance thing. Oh wait!  Except for one site. One single site was unreserved.

The handicap site. Can't reserve it online.

Could we get that? I picked up my cell phone to call. Surely we could. After all, Lilli has a disability and she is a part of our family. Maybe having a handicap site would make things a little bit easier. I hadn't even thought of that. I didn't know there were handicap sites.

I called and asked if we could reserve it. I explained about Lilli. Yes, as long as we have a valid handicap placard, and someone has a disability, I could reserve it. I asked what the difference was, and the difference was that the site is paved. Perfect. Lilli gets really anxious and has trouble navigating uneven ground, especially gravel.

That was the only difference that she mentioned. She didn't tell me that it was close to the beach, that it was next to the bathrooms, that it was the best site for wifi. We didn't even know. That was a gift.

I guess some people could say we got lucky. I don't believe in luck, though. But I do believe in a God who cares about his children, even the small details of their lives. Heck, if he knows how many hairs I have on my head, he knows that I screwed up when I rented a 30 foot RV with nowhere to go, and that I needed Lilli to have wifi to not have so many meltdowns so we could enjoy a trip together as a family.

That one single campsite next to the wifi was saved right there for us for those two days.

And because I didn't realize how great it really was that all that had been worked out for us, I totally believe that God had that guy walk by and tell me. It all makes me laugh. I just love God's sense of humor. He created humor, after all. And goodness, he's GOD. So he has the best sense of humor of all. It's very funny to me that this man would walk by and randomly tell me that we happened to have the best wifi connection in the whole place. Otherwise I wouldn't have known. That man will never know that his friendly comment was not random at all to me. He didn't know the hours I spent worrying about wifi, and that there was a girl with autism in the back of the rv on Youtube at that very moment, NOT melting down because God gave us the closest campsite to the wifi.

I wish I could find that stranger and tell him thank you for helping me to see that gift.



At the campsite picnic table, I open up my Bible and read to Chloe. 

Your love, O Lord, reaches to the heavens, 
your faithfulness to the skies.
Your righteousness is like the mighty mountains,
your justice like the great deep.

....For with you is the fountain of life; 
in your light we see light.

We talk for a bit about what that might mean. In your light we see light.

Maybe it means that when you believe in a great God, and you're looking for Him, you see the things he does. I'm really not sure. But I do know that without his light, we are lost without him. Like being in darkness, when we don't depend on him. Sometimes when you are in the dark, you think you can still see. You think you can still figure things out on your own. I know that if we had arrived at the campground in the light, we would've found it easily. We wouldn't have driven into the authorized vehicles only area. We were very close, but we just couldn't see in the darkness. Light changes everything.

My husband gets up and comes out with a cup of coffee. There's nothing like enjoying a cup of coffee at a chilly morning campsite at the beach. Not too chilly. Just enough to put on a sweatshirt and enjoy a hot cup while the sun warms up the world and the dew fades away. We speak in quiet voices. Chloe is delighted to be the only kid with our current attention. Lilli is happy in the back room of the rv with her movies. The boys are sleeping. I tell my husband about the man who told us how great our campsite was for wifi. We marvel over how it worked out.



A Girl Like Lilli


A little while later, we are getting ready for the beach. We leave tonight. Have to get to the beach one last time. I am inside the rv helping Lilli.  I've just lowered her to sit onto the potty and I'm packing a beach bag when I hear my husband yell out, "Hey I really like your bike! My daughter has one like that!"

People rode their bikes past our campsite all day on the paved loop around the campground. I don't pay too much attention as I hear him ask her name and where they are from. I thought my husband was talking about our daughter Chloe. Then I hear a woman's voice say, "She is my niece. She has cerebral palsy, autism, and seizures."

I drop what is in my hands and run out of the rv. 

"Hi I have to meet you!" I say as I run up. I could not believe it. Another little girl in the world who is like our Lilli. She has cp, autism, and a seizure disorder. How crazy. She is sitting on a special needs tricycle, just like the one Lilli has. And oh she is so precious.

The aunt says ," I want you to meet her mom, my sister. You two should meet and connect. She's had a really tough time. It's been so hard."

She pulls out her cell phone and calls her sister to come meet us. She is back at their campsite, and in a few minutes she walks down to meet us. We connect immediately, because we have such similar challenges with our daughters.

I run back in to get Lilli. "Come out Lilli, come see! Come meet another girl who is just like you!" I say to her with something like excitement as I quickly help her get off the potty and get dressed. It's like excitement, but it's not. It is some other feeling that maybe doesn't have a name. It's...the feeling you have when your very different, unique, disabled daughter is about to meet another girl in the world just like her for the very first time in her life. So I don't know how to describe that feeling.

I help her down the steps and over the campsite to the little girl on the special needs tricycle. The girl gets off the tricycle, and Lilli touches her face and smiles. Then she grabs her and gives her a big hug. They both smile. I want to bawl.

This moment of seeing two blond girls, both with cp, autism, and a seizure disorder, hugging each other with big smiles in the middle of a campground, I can hardly keep the tears back.



But the next part is almost unbelievable. 

We discover that we live about 20-25 minutes from each other. She lives in the next town over. She's right down the road from us.

How do things like this happen in life? We had to drive over five hours to a place we've never been, to camp for the first time ever as a family, to meet a little girl on a bike in a campground who lives 25 minutes away from our home. And she has the same diagnosis as Lilli. Heck, I could've met her in a grocery store or somewhere in the past two years. But I didn't. We met in another state, in a campground when she rode her special needs trike past our campsite while my husband was outside and happened to see her.

"Who is her neurologist?" I ask the mom. Even though I already know the answer. She goes to the same one Lilli sees.

I have never, ever met another girl who has the same diagnosis as Lilli. 

We talk for a long time and exchange information. But then we part ways so we can get ready for the beach. What are the chances? 

Except I don't believe in "chance."

The Ride Home


We pull out of the campground and drive back to my in laws' house around dinnertime. I make Lilli a sandwich and sit next to her and feed her while my husband drives. My kids eat dry cereal for dinner (fun sugary cereal out of the box! They never get to eat like this) and snack on stuff we pull out of the boxes of food we brought. We pull into my in laws' cul de sac at 10:45, and get everyone ready for bed. We are going to camp out in the cul de sac for our last night before we have to return the RV to the rental place in the morning.

The next morning, I wake up first. I sneak into the house and make myself a cup of coffee. I'm ready to unload and clean the RV from top to bottom. It will take a couple hours. I step outside with my coffee and see the sun peeking over the roof of the RV. My last sunrise of this trip. It makes me smile. We thought we were going to have a rainy trip.

The weather forecasts were all dead wrong.

Sunrise over the RV. I am so glad we went.

I am so grateful for the gift of this trip.

We did it.

We took the chance and tried an adventure. It did not cost that much. The RV was $100 per night, and the campground was $62 per night. We never used the propane because I cooked everything ahead. We heated everything up in the microwave. Except for the burgers and s'mores that we made over the fire. Also since the hot water heater broke after Nate's shower, we didn't use propane for that, so we don't owe the rv rental place for using propane.

The gas is the killer. My husband takes the sparkling newly cleaned RV to the gas station to return it. He texts me what he spent filling up the tank. He tells me later that technically he spent a little over $91 because he took this picture, and then put in two more dollars.



I am getting ready to leave to go meet him and pick him up when I stop by the front door and pick up a piece of mail my mother in law had for me. It came there for some crazy reason, because four years ago, we lived in their house. 

"What's this?" I ask her.

"Oh, that came for you. I've been meaning to give that to you," my mother in law says.


I open it up. It's a check for $92.77. I have absolutely no idea where it came from. It is not from my bank. It is not from my health insurance. I just do not even know what it is. But it's to me. And it's for about the same amount that it just cost to put gas in the RV tank a few moments ago. So I guess it's from God. Stuff like that happens all the time, you know. I don't get it. But if I ever completely understood God and how He works, He wouldn't be very amazing. I'm glad I don't understand God. He's mysterious. He's surprising. He's really awesome. And I love his sense of humor.



I just don't believe in dumb luck, I believe God takes care of us. He gave us a campsite when I botched up the trip planning. He gave us the best wifi in the campground and I didn't even know it. He gave us beautiful weather and a sunrise when all the predictions were for rain and clouds. He paid for our gas. And He introduced us to a really cool family that I know we will see again, and a neighbor from back home who has a child just like Lilli. 

Thanks God, I'm pretty sure you did a whole bunch of other things for us that we didn't even notice.

After the Trip


The nurse supervisor comes to the house. Boxes and bags are still on the kitchen floor. We are still unpacking. I haven't seen her since last month, when she told me how the campground was booked a year in advance. I tell her how I called and got the last campsite, a handicap site, and how great the trip was. I show her the picture of the bathroom right next to our campsite and the wifi on top of the bathroom. I show her pictures of Lilli at the beach, eating cheesepuffs at the picnic table, and riding in the bike trailer with my super husband pulling her with Nate in the baby seat. 

She is so happy for us, that we had a great time. But mostly, she is happy that we even went at all.

"I have so many families that would never do what you just did. Most of the special needs families I work with, they never even leave the house. They won't even take their kids to the grocery store."

I get that. It's hard.

"But you guys took a trip and it was such a great experience for Lilli to get to go. Most of the families I work with, their kids are HOME BOUND. They never get to go anywhere."

After she leaves, I think about her words for a long time. 

It is hard. So hard to do things with a child who has multiple disabilities. But even though I was fearful before we left, and anxious on the way, and it wasn't easy getting there, I am so glad we went. 

Because the sun, it always rises. There's always a sunrise somewhere. You have to get out of bed and run to go see it. If you stay in bed, you'll miss it. Yeah, it's easier to stay in bed. Sure, it's easier to stay home. But there's adventure out there. There are surprises to experience, and gifts to find in life. We each have to figure out how to make it work so that we can experience adventure, even if ours looks different than someone else's adventure.

When you take risks and step out in faith, there are always, always gifts along the way. When you step out of your comfort zone and talk to total strangers, cool things happen.


Envisioning Versus Actuality


Remember my "vision" of what camping as a family would be like? I had a detailed image of what we would all be doing on the trip. Most of my envisioning was wrong. I was right about Lilli and her movies and legos, but not much else.

 A park ranger came by and nicely told us we were not allowed to have a baby pool at the campsite for safety reasons. I had brought it so we could keep him from wandering away. Later Nate did wander away from the campsite while we were distracted getting the bikes ready for a bikeride. Our camping neighbor brought him over to us. I was mortified. But we got him back...I don't think that counts as losing one of our kids, does it?

Jasen and I barely got to sit at the campfire together at the same time, but that's ok. We still enjoyed it. We never played one board game as a family. I guess we had them in case it rained. We never needed them. Chloe never did lay on her blanket to read a book because she was too busy riding her bike and playing with other kids at the campground. I hadn't thought of that.

Short lived. But it was a good idea, oh well. 

But the RV didn't crash. We didn't permanently lose any of our kids. And we all made it back.

What I didn't envision were these gifts:

-Relaxing at the beach. Lilli napping next to me, while I sat in a chair and read a book. (!!)

-Our kids playing in the sand with each other and other kids. Friends to play with on the beach! Nate wasn't interested in cold water, so he played right near me in the sand almost the entire time, and I didn't have to chase him.


-Being so close to the beach. Jasen and I taking turns walking back to the RV to get food, drinks, and take Lilli to the potty. We could go back and forth from the beach without doing a huge pack-up.

-A fun family bike ride where we saw neat birds and alligators.

-Meeting cool people that we will keep in touch with.

-A random check of $92 to pay for the $91 and change cost of a tank of gas.

-Laughing hard, doubled over about our crazy first night. Authorized vehicles only.

And so many other memories we will treasure and laugh about for years.

What Do the Kids Remember?


I ask my husband, one week later: what was your top favorite moment of the trip that makes you think, it was all worth it.

My husband immediately answers, "Two things. Walking with Lilli on the beach. She wanted to walk with me, and she loved it." She did. I took many pictures of the two of them. Sweet daddy's girl. 

"And the other was when we rode our bikes together on that trail," he says.

I already knew his answer, because when we finished that bike ride, my husband was exhilarated. I was just glad we made it and no one wiped out, including me. I knew that was his favorite moment of the trip.








Then I ask the kids. What did they remember? What did they love most? Josh's favorites were "the bed, and going to the beach." The bed. He liked sleeping on that bed up above the cab in the RV. Kids are so funny.

Chloe said, "Everything! Every single thing. Riding in the RV. Running to the beach and seeing the ocean that first day after not seeing it in so long. Playing with other kids and making new friends. Riding my bike around the campground. Going to the gift shop! Everything!"

Every single thing, she said. Everything? This is a kid. To me, "everything" would include the stressful ride there. The pan handler, the seizure scare, Nate puking, the fighting and the crying, the bike wipeout, the stress, the complaining, the broken glasses.

She said everything.

Kids. They aren't like adults. They love the things we don't think of. And they lump it all together into one big thing. Chloe also said that the trip was "amazing."

 And this is exactly why we should do it all over again.

After mulling over her answer for awhile, I think I agree with Chloe. What was my favorite part of the trip? Everything. The whole beautiful mess. All of it. That was our family trip. And that's why it was all my favorite, because we were all together as a family. We were not split up. That was what the whole trip was about.

Being all together on a camping trip.


Future RV Trip? 


We now have a new fun dream of saving up to buy a used RV and take as many camping trips as we can before the kids grow up.

If life wasn't interesting, chaotic, or challenging at times, how boring would all of our stories be? It's hard to do things like this as a family, especially when special needs or difficult circumstances come into the picture. Planning a camping trip for any family takes time and determination and so much effort. But this is where some of the best memories in life are made. Stories you will tell forever. Experiences your kids will never forget.

Maybe our experience will inspire someone to try something new. So go and plan your own adventures. And enjoy your crazy ride. Remember that pretty much nothing will work out the way you plan, but a lot of it will still probably be good. You'll never know unless you try it.

It'll be fun to tell all about your adventures when you get back, and your kids will remember the good stuff.

Just make sure to hide some cookies for yourself somewhere in case you need them.

2 comments:

  1. You are one of the best writers I have ever read!! I am laughing and crying and my heart is touched and challenged. Thank you, thank you for being so real and reminding us all of the most important things in life (as a side note, we just got back from a camping trip this weekend where we experienced two flat tires on our pop up...they only come with two :-) )

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    Replies
    1. Colleen, I love this comment...two flat tires?! I know that was a memorable trip for you! :)

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