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. 


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.

Attempting RV Camping - Part 3: The Sun Always Rises

Day 2

It is still dark and very early.  I wake up to Lilli's happy sounds in the back of the RV. She is laughing and making little fun squeals. I know that this is because she is watching Baby Einstein re-mixes on Youtube. (There is a whole world out there of people - who I think must also be on the autism spectrum - who take Baby Einstein movies them. Sped up, slowed down, set to techno music, etc. Highly entertaining to Lilli. Not so entertaining to her parents.)

We had arranged the sleeping places this way ahead of time on purpose. We knew Lilli would wake up before 5 am, and we would have to figure out how to keep her happy and from waking up the rest of the kids. And also the entire campground. Since the back room has a door, we closed the door and had the iphone charging and ready to go for 5 am to keep her back there and happy for awhile. My husband is super dad. He can get up, take her to the potty, get the phone on her techno Baby Einstein video, and fall alseep next to her with a pillow over his head. I cannot do that. But we all have our different talents.

Not the best picture, but the only one I have of the back of the RV. The bathroom door swings out and doubles to become a bedroom door, closing off the back half of the RV.  This is a morning moment of Lilli hanging out on the bed back there with legos and a movie.

Our plan worked.

I lay there on the pull out bed next to Nate in a mixed state of extreme relief to have finally gotten here, and apprehension about how the rest of the trip is going to go, based on the fiasco of last night. Surely it can only get better from here, right? We are at the beach! The beach is my absolute favorite place. I am partial to Ocean City NJ, but I will take any beach as a second choice. Anytime I am ever at the beach, I wake up before dawn and feel an indescribable pull toward the sunrise over the ocean.

But today, even though I feel wistfully drawn to it, I cannot get up to watch the sunrise. I am physically worn out. Also, it is cloudy and there might not be a visible sunrise. The weather forecast says clouds and rain all day. I am just going to ignore that for now. I am determined to drink my coffee and read a book. This is vacation, after all. I am going to make it feel like a vacation against all the odds.

I sneak out of bed and make my coffee, and sit at the little kitchen table with my book, turning pages quietly. Josh and Chloe are sleeping up in the overhead loft. Nate is sacked out on the couch bed across from me. The noisemaker I brought blocks out a little of Lill's noises and the kids all sleep through it. Ok that's glamping. A spa noisemaker plugged in to keep your kids sleeping while camping. I admit it.

This is good. It's going to be OK. Let's just forget about the trip last night. We are here. I have coffee and a book, and we are at the beach.

My husband comes out from the back room and silently holds up his glasses so I can see them.


Lilli had picked up his glasses from the side table, snapped them in half, and tried to put them on his face while he was sleeping. 

"Have a cup of coffee hon. We're on vacation."

The First Bike Ride

After quiche and bacon and sugary fun cereal that you eat right out of the box when you're camping, we get ready for our first day at the beach. The kids are crazy from excitement (and the cereal) and slowing my beach-packing pace. While I'm packing towels and bags, I suggest to my husband that maybe he could take the kids for a bike ride to keep them out of the way.

Camping cereal. My husband laughed at me because that first morning I said to the kids, "Do you want bacon,  pancakes, or sugary fun cereal that you eat out of the box?" Hmm, tough decision for a kid. "Sugary fun cereal that you eat out of a box!" they yelled. 

He loads our two and a half year old on the baby bike seat on the back, and takes off with Josh and Chloe. Lilli, who didn't have any fun sugary cereal and sticks with her gluten free pancakes, stays behind with me and I get her changed for the beach.

Josh is our dare devil, so Jasen instructs him to stay behind him, watch for cars and other bikers, and stay on the trails.  To confirm, he asks Josh, "You understand?"  Adjusting his helmet and clearly thinking of wheelies or Pokemon rather than bike safety, Josh responds "Huh?  Oh, yes sir."

According to Jasen, not five minutes into the ride Josh darts in front of my husband, hitting the edge of a side walk and nearly wrecks, causing a chain reaction.  Jasen swerves, hits the brakes and quickly ends up sitting on the handle bars as Nate's chunky momentum swings the back end side to side. Jasen, hopping on one leg as he desperately tries to keep the bike upright, hops in circles for what seemed like minutes until he finally crashes to the ground.  He pops up instantly to check on Nate who was in the baby seat that crashed to the ground.

Nate is fine. Several bystanders are idling at a distance, clearly concerned.  Jasen oddly finds himself with his hand in the air giving the beauty pageant wave turning in circles politely nodding his head and smiling, letting the audience know: Nate's fine and you're welcome for the performance.  A middle aged man approaches Jasen.

"You almost had an epic dad-save there..." With a sideways smile while he walks away, and adds, "but not quite."  Nate is uninjured, Josh has learned to stay in back, and dad has the best knee hamburger he's had in years.

Good thing I had packed the big band aids in the first aid kit.

Beach and Movie Soundtracks

We head to the beach together. How is this going to go? We are carrying two chairs and that feels like a joke. Will Jasen and I even get to sit down? It is all such a gamble.

We arrive at the beach with high hopes. The sun comes out and the forecast changes from cloudy to sunny. It's an absolutely perfect beach day. Lilli is content to sit in her stroller, listen to music, and enjoy the sun. We meet a very cool family from Boston and the husband works with adults who have special needs at a special outdoor program. He has met Joni Erickson Tada. I am super jealous. They are sweet about Lilli and our kids play together. Lilli naps in her stroller next to me and Nate plays in the sand.

It's amazing. I actually get to sit in a chair at the beach and relax for a little bit.

Lilli does really well at the beach, with only a few minor times of being upset. I cycle through her music, Veggie Tales kindle movies, dvd player, and Sesame Street movies I had downloaded onto the iphone. I have all of the devices hidden down in the back netting of her stroller behind her, and she lays back and listens to them and looks out at the ocean. I guess that's like relaxing paradise for Lilli.

Our beach set up. No one near us. Lilli is snoozing under that towel in her stroller.

After the beach, we all go to shower and discover that something is wrong with the hot water heater on the RV. I call the 1-800 number and get trips for trouble shooting. It never works for the rest of the trip. It's not a big deal though, because we are right next to the very nice campground bathrooms.

Later we all take a family bike ride on a trail and see an alligator and cool birds. Lilli rides in the bike trailer. My husband has Nate behind him in the baby seat, and pulls Lilli in a bike trailer at the same time. On a trail through the woods. Over pine needles and tree roots. I can't believe we do this, but it goes great. No wipe outs this time.

We come back after the bike ride and cook burgers over a campfire for dinner, and roast marshmallows and make s'mores.

It wasn't all how I had envisioned it.

For all of my envisioning, many things did not go as I had planned. That's life, right? We can make all the detailed plans we want, but life is going to surprise us every time. We stressed about the smoke from the campfire and tried to keep Lilli in the back room with the door and windows shut and an air purifier running. We yell "Shut the door" a few dozen times as the kids come in and out with food. We learn from all of this. It's still good. It's doable. We can do it again but better... the next time we go camping.

Josh found a cool spot to eat fun cereal out of a box.

This guy is my hero. Just don't look at his shoes.

At the campsite, she is happy with her movies and legos. The wifi is not perfect but it works pretty well. We think this is going pretty great so far. Besides the not so great stuff, it's pretty great.

Lilli chilling at the picnic table after the beach with her DVD player in her lap and a bag of cheesepuffs.

Day 3

It's our last day. 

What? You just got there! 

I know.  I cooked so much food so we would not have to cook on the trip. I feel like we need to sit around and eat all day.

Lilli is up again at 5 but happy with Youtube while Jasen again falls back to sleep with a pillow over his head. I get up and check the weather on my phone: cloudy. But I wanted to see the sunrise. I always try to see a sunrise when I get to the beach. It's my thing. 

I crawl back in bed next to Nate and lay there for a minute, debating.

I'm going to go. Maybe I'll get lucky and get a glimpse of the sun through the clouds, I think. 

I reach up and tap Chloe's leg and she sits up immediately and nods. She knows why I am waking her. This is what we do. We steal out into the chilly morning darkness and run quietly in our flip flops to the beach entrance. We might catch it, I tell her in a hushed voice. The entire campground seems to still be asleep. Hurry! We run and come up the path to the top of the dunes just in time. The horizon has a layer of clouds resting just above the water line. But just then the top ridge of an orange sun peeps over the clouds, and I am thrilled beyond belief to see it.

The husband from the family we met at the beach the day before is standing there at the top of the path, also watching the sunrise. We smile and nod a good morning to each other.

"I didn't think we would get to see a sunrise today because of the clouds," I say to him. "But there it is!"

"Yep, it always comes," he says. We smile.

"Every morning," I say back as Chloe and I take off running down to the water. 

It's that verse. His mercies are new every morning. The sun rises every day, clouds or not. There it is, in full beauty over the sparkling ocean.  I feel like crying because I'm so happy, but instead Chloe and I laugh and run along the water's edge and take pictures and pick up shells. 

This was a gift I was hoping for. It is priceless beyond measure to me. These moments in the sunrise with my Chloe. I can honestly say that for all the insanity we went through to get here, this moment alone makes it all totally worth it.

But the trip is not over yet. There are more surprises still to come.

Friday, April 28, 2017

Attempting RV Camping - Part 2: The Actual Getting There

Getting on the Road with Shoes

We finally pull out of my driveway with enough stuff for a two week camping trip, (only going for two days, three nights) and drive an hour and 20 minutes to my in laws' house. This first leg of the trip is necessary because the closest RV rental place is in their town. But also we need my in laws' help to make this happen and actually get on the road. Without their help, things would have been much more difficult.

We will leave both of our cars and our sanity at their house when we pull out in the RV in a few hours.

My mother in law feeds the kids lunch while my father in law drives me to the RV rental place to meet my husband. When I get there, he is getting through all the paperwork stuff and I duck into the bathroom to swipe on lipgloss and rake my fingers through my crazy hair. I look haggard. I look like I have four kids and spent the last seven days packing for a camping trip or something.

My husband pulls the 30 foot RV out into the parking lot and I laugh and snap a picture. This is going to be an adventure indeed, no matter what happens.

My husband, his first minute behind the wheel of the 30 foot RV. I'm laughing. I won't be laughing in a few hours though.

I follow him back to my in laws' house and we proceed to unload our two cars and cram everything under the sun into the RV. The kids are squealing with excitement, climbing all over the RV. We can't wait to get on the road.

Jasen is still in his office clothes since he came straight from work to meet us. He goes to get changed and realizes something that I had not envisioned in all of my many hours of planning. He only has his work dress shoes. He forgot to pack his sneakers. How can we go to the beach with him only having dress shoes? Can he wear my father in law's? No. Wrong size. Can he just go barefoot the entire time? Really, will the fashion police arrest him if he walks to the beach wearing a bathing suit and black socks and dress shoes?

For the first hour of our big adventure in the RV, we go shoe shopping. My husband awkwardly parks the huge beast in two different parking lots and runs into stores trying to find cheap sneakers in his size. I try to bite my tongue and make the best of it, giving the kids snacks and making a big deal out of how cool the RV is.

Regret #1: I made detailed check lists for every article of clothing and shoes for each child and myself. But I did not make a list for my husband. Darn it.

We get on the road and listen to a mix cd from our newlywed days as we barrel down the highway loaded down with bikes, two strollers, and everything possibly needed for a camping trip.

And new sneakers.

They're kind of ugly but that's ok. No one will know us at the beach.

The newlywed music makes me remember that I love him, even though he forgot his shoes. We're on our way. We love each other. We are all happy. Life is good.

And then, we stop for gas.

The Mood Shifts

In the next few hours, the happy hopefulness unravels.

We encounter a pushy yelling panhandler at the gas station who bangs on the RV and won't go away. He explains his family is stuck at the gas station and his wife is pregnant and they've run out of gas as he points to his family: a woman who looks past menopause, and three teenagers on their cell phones and drinking soda. He wants some money to put gas in his car.  A story my husband has heard multiple times from other gas station pan handlers and wishes they'd come up with a new backstory.

I am struggling with getting Lilli to the tiny RV potty and I say, "I really need your help, tell that guy you have to help your wife and daughter."

My husband explains he's busy helping his wife with his special needs daughter and will be out to talk to him after he's done.  The man repeatedly knocks on the doors and windows, impatiently circling the RV.  I can see my husband's patience running out as he takes off his watch which he explains to me later he didn't want it to get damaged in case he needed to practice his years of martial arts practice.  Apparently the man decides that his circle and knock strategy wasn't working so he changes tactics and begins sobbing uncontrollably, apologizing for bothering us and blubbering "I didn't know you had a daughter with special needs...I'm sooooo sorrryyy-eee-eee-eee."  My husband has had enough...he sternly tells him to stop the act.  He responds "I'm not acting.  I can't help it. I'm sooooo sorrryyy-eee-eee-eee?"  Again, with more volume, my husband tells him to be quiet and stop faking it, and stop taking advantage of people.

The man immediately stops crying and looks at him with a look that says "ok, you got me" and gives him a fist bump.

My husband gives him two bucks and tells him he's only doing it in Jesus name and continues to lecture him on how to act.  Josh and Chloe are wide-eyed, taking in the show. While all of this is going down, everyone is using the RV potty so that we don't have to put on four little pairs of shoes and all go into the gas station bathroom. Lilli gets anxious and cries over using the potty that is in a narrow space, up on a step and is difficult for her to navigate. When all bladders are empty, we roll on.

I will note here that the entire drive, Nate was angry because he was in a carseat, and he could not enjoy the fun opportunity to ride on a bench or be close enough to reach the table. His seat was placed in the only spot that had a seatbelt for a carseat. Everyone else swapped around throughout the trip, but he had to stay put. Everytime he started to really lose it, I pulled out a new snack or book. He ate many snacks. Many. He asked for two bananas, and also ate a huge bunch of grapes, a box of raisins, a cookie, some chips, some pretzels, and other foods I can't remember. He ate a LOT. This information is important to remember for later.

On the road again, Lilli is doing a strange staring thing and I try not to panic.

"Hon, don't get alarmed but I think Lilli might have a seizure. She's staring and not responding. She's not watching her movie and she's doing this weird thing with her lips. Keep driving and I'll let you know if you should pull over," I say as calmly as I can. Even though I feel anxiety rising up within me.

Chloe and Josh sit mutely on the bench seat, watching me across the aisle.

"Are you guys ok?" I ask them.

"No, we are not OK!" Chloe responds. "This is very stressful! First, that strange scary guy at the gas station banging on the RV and now Lilli might have a seizure!"

"It'll be ok," I say. (Will it?) "Lilli is ok right now. I'm watching her. It's going to be ok."

Jasen is driving on a back road now, with stop lights. It is after 9 pm and dark. He asks over and over again if Lilli is ok, what is she doing, how is she acting? I tell him she is fine, but he should probably pull over soon and adjust her. Chiropractic adjustments have helped her seizures many time before.

My husband shocks me by pulling up to a red light, throwing the RV into park and leaping out of his seat. He whips around to the table where Lilli is seated, and adjusts her neck. "Tell me when the light is green!" he yells to me.

What? This is so crazy. A funny image pops up in my mind of my husband with a cape and I think to myself, "It's SUPER CHIROPRACTOR!!!"

"It's green! It's green!" I yell. He jumps back into his seat and we take off again.

I watch Lilli carefully, and pull my phone out to check the GPS. I'm supposed to be navigating here. My husband is totally depending on my directions. I am totally depending on the address I have scribbled down on my notes from weeks ago when I made the reservation.

It doesn't look good when we pull up to the address and it's the middle of the road with nothing but grass on the side.

"You have reached your destination," the GPS woman tells us.

Oh no we haven't, lady.

Jasen keeps driving. He pulls up to a fork in the road and turns around. Just then, Nate lets out a cry and says something about a "Boo boo" in his belly and proceeds to throw up an enormous amount of puke all over himself.

Oh yes. I had given him too many snacks.

Ok. Ok. It's going to be OK. I get rubber gloves out of a box I brought, thankfully, and a bag, and wipes. I start to try and clean up Nate while balancing in the middle aisle. Jasen has to make a u-turn.

"Hold on!" he yells. I plant my feet like I'm on a surf board in the middle of the aisle.

Nate's seat. 

Regret #2: We drove too far, I think as I clean up the puke while we make not one, but FOUR U-TURNS in a huge RV on a dark back road. We should've tried our first RV trip out at the closest RV park next to where we rented it. WHAT were we thinking??

A box with pots and pans and pot lids and dishes slides off another box and crashes onto the floor as we round one u-turn.  My husband and I yell back and forth to each other about directions. I rip off the gloves and punch something different into the GPS to see if that works. Finally, we see the tiny, unlit sign. We pull up to the dark, locked gate.

Everyone is calm, trying to keep their emotions in check. Wait. No they aren't. I was kidding. We are traveling with four young kids past their dinnertime, with boxes thrown all over the RV floor, one kid covered in puke, and the others aren't doing so hot either at this point. This is a test of marital strength, moments like these. Can we make it? Yes. We will. Because we are all trapped in this hot mess together. And we have to share the beds and the food tonight. And I know where the homemade chocolate chip cookies are hidden, and I will be eating as many as I can when we finally get there.

Fortunately I had called the campground office earlier and let them know we would be arriving after hours, and I had the gate code. Otherwise we would've been locked out and forced to find a place to park the RV for the night. At least we were "Glamping" like someone told me we were doing. Glamour camping in an RV, not a tent. But really, is it "glamour camping" when you travel with four young children and someone throws up?

I'm not sure.

Unauthorized RVing

Jasen unlocks the gate and we pull into the pitch black campground where we proceed to get lost.


We argue about driving into an area that is clearly marked with a sign: AUTHORIZED VEHICLES ONLY.

"Hon. Authorized vehicles only, that's not us. We aren't authorized," I say.

"Yes but I really think this is it. I'm going to take it."

"Don't. PLEASE DON'T. Authorized vehicles only, that's like, maintenance stuff, it's not for us! I'm telling you!"

He turns in and drives onto the authorized vehicles only road.

We come to a dead end of dark nothingness, where we sit and idle for a moment, collecting ourselves. My husband realizing that ok no, we were not authorized after all. And me, barely keeping the lid on my anger because I'm about to say things that will only make this mess worse.

We have to back the RV up in the dark to get back out of the authorized vehicles only area. We slowly back up on the road and out and around the AUTHORIZED VEHICLES sign, in silence.

It's going to be OK. We will survive this trip. It's only the first day.

I google a campground map. Oh Google, I do love you.

We finally find our campsite thanks to the online map and my husband backs into it and parks like a pro. After all, he had all that other backing up experience in the authorized vehicles only area. We both get out and he hooks everything up while I hold my phone flashlight up for him to see. Inside the huge expensive hot metal box of stuff on wheels, Josh and Chloe are fighting. Lilli is crying. Nate is sleeping in his carseat completely covered in throw up.

Yay! We're HERE!!!!

We eat dinner at midnight after washing off poor Nate in the teeny RV shower. We toss the offensive pukey carseat outside onto the grass. It is far past "quiet hours" in the campground, yet our family is not at all quiet as Nate cries while getting washed off and Lilli cries while we try to get the devices onto the wifi. I had asked for the wifi code ahead of time too when I called the campground office. I only hope these little walls are thicker than they seem. Whoops, we left a few windows open to let fresh air in because of the throw up stink. Our neighbors are going to LOVE us.

After midnight-ish. We're here!! Nate is in bed behind me, finally cleaned up. The dirty carseat is now outside. Josh is getting ready in the bed up over the cab. Chloe is watching the end of a movie. Lilli is in the back room on the wifi, trying to keep it together. I may have already eaten a few cookies before this was taken.

Everyone falls into the beds and promptly they all fall asleep. Except for me. I, the last one up, eat several chocolate chip cookies by myself in the tiny kitchen. I set up the Keurig and unpack our mugs and sugar for our morning coffee. Camping with a Keurig might be glamping.

We made it. We are here. We took a chance to try this adventure and we are doing it.

Just before I fall asleep, I check the weather for tomorrow:


to be continued in the next post... Attempting RV Camping - Part 3: The Sun Always Rises

Attempting RV Camping - Part 1: Neurotic Craziness Before the Trip Craziness

Neurotic Packing

We leave in three days.

My house is a complete wreck with cooking and packing. I tell a friend, "I'm excited and terrified at the same time. I read on the campground website that there's spotty wifi at the campsites. Pray for us!" 

We laugh together. She gets it. Like me, she has a child who has autism and an addiction to Youtube. We laugh, but it's no joke. The meltdowns that ensue from spotty wifi with a child with autism consistently, negatively impact our family life. We have to have good wifi for the survival of our family.

The weird things I have to think of to pack for Lilli. With my other children, the list is normal:

Clothes. Books. Beach toys. Hats. Sandals. Board games. We are so excited for this, we cannot even stand it. 

At the top of Lilli's list: Seizure meds. Handicap placard. New movie download onto kindle. Extension cords. Add extra data onto phone plan. Bags of legos. Make a movie choice book. Extra cheesepuffs.


Clothes? Oh yeah, those too.

I have spent hours figuring out how to keep Lilli happy on this trip. I have gone above and beyond with the planning for her.

I am torn down the middle with happy anticipation and fear. We have never camped with all of our children. My husband has taken Josh and Chloe camping. But I couldn't go. I stayed home with Lilli and baby Nate. We didn't think Lilli could handle tent camping. So we split the family up. I could've figured out how to take a baby camping and it would've been easy compared to taking Lilli. It was just something we had to do for Josh and Chloe. Sometimes it's hard to figure out how to do things as a family with special needs.

Camping with their dad

I hate splitting up. But we could not figure out how to camp. And then one day we came up with this crazy idea that maybe, just maybe we could all try camping together if we rented an RV. 

The RV is purely for Lilli. We have this plan and we think it might work. If it works, life will change for our family.

Is this crazy that we are attempting this? Why is it such a big deal? It is a big deal because we have to think about things for Lilli that we don't have to think about for our other kids. I'm barely thinking about my other kids, not concerned at all about how they will do on the trip. Sunscreen? Stuff to do? They will be fine.

But what if Lilli has a seizure while we are on the trip? How far will we be from a hospital if we need one? What if I forget something very important for her? What if she cries a lot? What if she wakes up at 4:30 in the morning (extremely likely) and screams and sobs loudly and everyone in the campground can hear her? (quite possible) Will the air purifier that we are bringing do a good enough job of clearing the smoky smell out of the RV if we have a campfire for the other kids? (Who brings an air purifer on a camping trip?)

But...what if it's great? What if Lilli is super happy? What if it is the most fun trip we have ever been on together? What if this is the best thing our family has ever done, to go camping in an rv?

I have both anxiety and excitement.

I can't wait! But I'm scared.

Temporary movie choice book I made just for the trip. I wish I would've taken a picture of the bags and boxes I packed JUST for Lilli.

The Day Before

Lilli wakes up at 5. The sleeping pills are not really working. But 5 is better than 4, I guess. I wake up teary, feeling defeated. I am woken up this way very often. But then after a cup of coffee, I feel better. It's going to be a good day! We are going camping tomorrow!

We have three therapies today, all crammed in at the beginning of spring break before we leave town. I have a list of cooking to do today and still the packing and never ending laundry. I had already packed the kids' bags a few days ago, but then I had to pull clothes out from them for them to wear. So. More laundry and re-packing. Just goes to show you that sometimes, being a last minute person is actually better. I was trying to not be a last minute person. But I did it wrong.

I begin researching hot spots and I call Verizon at 7 am to buy more data for Lilli. I've got to make sure this piece is in place. 

I am an envisioner. I spend weeks and hours playing out scenarios in my mind. Before my husband and I got married, every night for months leading up to the wedding I would get in bed and fall asleep thinking about walking down the aisle. I would look around in my mind as I walked down the aisle at all the details, enjoying them ahead of time, fixing and changing things in my mind.

Then I would get up and make lists. 

This is how I handle most big things for our family. Envision. Make extensive lists. Brainstorm potential problems. Work out the smallest details to be preventative and make sure we avoid the worst case scenarios. Pack every possible item that we could ever maybe need in the weirdest situation that might arise, to make sure things go ok. 

So for this camping trip, well I have been RVing in my mind for over a month. Imagining what it will be like. How Lilli will be. Thinking about the setting, like the background and props on stage in a play that I practice in my mind. Trying to work out the kinks ahead of time and make lists so I can think of absolutely every detail and prevent any meltdowns or problems before they can even begin. I know, because I have three other children, that this is not regular motherhood. This is motherhood on crack.

This is because of autism life.

If I can pack everything to keep Lilli happy, then the trip will go ok. This is truly what I am thinking. The equation in our family is:

Lilli is happy = our family can enjoy life. Lilli is melting down = life stinks.

I know this is wrong. I should not balance everything else in our family on Lilli not having a meltdown. I just...can't really explain it well. We have four kids. Like four wheels on a car. If one of those wheels goes flat: Lilli's wheel, this car ain't going nowhere. I have to try and make sure we don't get a flat.

I am envisioning the following scenario: My husband and I will be sitting outside the RV in camp chairs next to a campfire. Nate will be running around with Josh, picking up sticks and rocks. Playing with hot wheels in the dirt. We have a small baby pool that we will put sand or water in with toys for Nate to play in. That will hopefully keep him occupied and not so likely to wander away from our campsite. Josh will be hitting things with sticks and climbing any trees, if there are any. Digging holes in the ground. Finding bugs. Chloe will be into cooking things over the fire, chatting and playing board games with my husband and me, and laying on her picnic blanket with her ten year old feet up in the air reading books. The five of us will be doing all the things that people enjoy doing while camping. 

And Lilli. 

Lilli will be inside the RV, crouched on the floor with legos spread out all around her, with her DVD player going and youtube on her phone at the same time. And maybe a bag of cheesepuffs open next to her. She will be separate from us, but happy. Hopefully. She will have her own space with her familiar comforting things around her, and she will be happy. 

And we will enjoy this trip as a family, separate, but together.

If my plan works, then heck, we are going to buy a camper and camp all over this country. As long as there's full hook ups wherever we go, that is. Oh and wifi. 

Envisioning things in your mind is a way to plan. But there is a serious flaw to this method of planning. You see, life rarely works out the way we plan. There are always hidden surprises. We cannot predict the future. There are twists and turns everywhere. And expectations are set too high for us to ever attain. A therapist once told me that I set my expectations too high, and that's why I'm always disappointed. She told me to work on lowering my expectations. 

So maybe I need to lower my expectations for this trip.

Let's see... hmm. Okay. If no one is miserable, it will be a good trip. No? Not realistic enough for a family of six? You're right. Let's go lower. 

If we don't crash the RV, it will be a good trip.

If we don't lose any of our kids, it will be a good trip.

If we make it back, it will be a good trip.

I think that's low enough.

Some of my lists from my trip list binder. Some, but not all. This is about half.  I had an entire binder devoted to a three night, two day camping trip. Neurotic? I think maybe a little. 

The Morning We Leave

It's pouring buckets.

Great. We have spent $300 to rent an RV to go camping in the pouring rain.

The "positive" setting on my envisioning is currently out of order. And we are tired, From all the packing for this rainy vacation where we will load up an rv with about 50 bags, drive for hours to park and sit in that rv for rwo days together in the rain and try not to drive each other completely nuts.

Lord please let us have a little sunshine in the next few days.

But just in case, I might go pack the kids' rain boots. Cause why not. We have packed practically everything else we own.

I walk by my toddler who has stripped down to his diaper, and is currently wearing a dirty colander on his head that he pulled out of the recently loaded dishwasher.

I wonder if we will ever even get out of here.

Help me out here, kid. We are supposed to be in the car right now.

...To be continued in Attempting RV Camping - Part 2: The Actual Getting There

Sunday, April 16, 2017

Easter Morning Hope

Easter Morning 2017

The sun has not risen yet. After awkwardly stumbling down the dark hallway, Lilli opens the cupboards in the dark kitchen, looking for the iphone. She accidentally knocks the mug holder that is on the counter onto the floor. Mugs clatter and roll.

It is my turn to get up with her this morning and at the sound of the fallen mugs I already feel my temper rising within me.

It is Easter morning and I wanted to wake up differently.

Not this way.

Not this way that we wake up every day here in this house with a teenager who has autism and cerebral palsy.

I didn’t want to take her to the potty and wash her 13 year old hands for her. I wanted to sleep. I didn’t want to have to drag the baby gate out and put it up so she won’t repeatedly go down the hallway and open up all the bedroom doors and turn on the lights, waking everyone else up.  I didn’t want to have to hide all the devices quickly in the cabinet before she came looking for them, crying for them. I didn’t want to have to push the table back against the wall that she always yanks out because the lego bin is tied to the legs of it  because she always dumps the legos. All of this before I get my first cup of coffee.

I didn’t want it.

Lillil's current corner. The table I push back every day. I have to give her a corner to try and keep the legos sort of in one place. The laundry basket is tied to the table in hopes that she won't dump the entire basket multiple times a day.  She tries. My plan doesn't really work that well. 

I feel anger, but my anger is strangely directed. It is not toward my daughter.

Whenever I feel this anger, it is because I feel so alone. I feel angry at people who judge us for looking for answers to help our daughter, and judge the decisions we make.  I feel angry at people who have formed opinions about us, yet they will never have to live this life we live. They have never walked in our shoes. They have no idea what it is like. Others come to help and go. But in the end, we are the ones who are left to deal with how our daughter is. This is why we are always searching for ways to figure out what happened and how we can help her. It is because I worry about the future, and I see years of this same scenario playing out before me in my mind with no relief. I think about how I will be living this same morning routine when I am 70, and it hurts my heart more than I can describe.

She falls on the floor and cries. I want to cry. I am so not up for this today. She comes to me a dozen times, pulling on me. Crying. She finally gets settled with watching Cinder Elmo on her mini DVD player, probably the 25th one we’ve bought for her since she’s broken all the rest.

And then I sit down with my coffee. I take a breath, and I think, it’s Easter.

Thank God it’s Easter. Thank you Jesus, I need today. We all do.

Tears fall. Tears of sorrow and relief at the same time. Sorrow for the deep pain we all experience in this life. Relief that there is hope.

These words I have clung to for the past few weeks:

So be truly glad. There is wonderful joy ahead, even though you must endure many trials for a little while.
What does that even mean? Wonderful joy ahead? It means we don’t even know how amazing it is going to be when we get to heaven. Because this life is darn hard, and only getting harder. And this hope we have, through Jesus Christ, of heaven after this life is over...this is what gets me through. And these "trials" in life? Wow, I don't even know what a true trial is. I am blessed. Despite our daily challenges, we have freedom in this country and so many blessings to be thankful for in life.
The current verse above my doorframe.

Easter is Better Than Christmas

Easter is truly the best day of the year. It is the holiday of hope, of miracles, of redemption and salvation. Easter is love and joy and thankfulness. Easter is the most amazing day we have. It’s better than Christmas! I tell my children.

Ahhh, wait a second, better than Christmas? I don’t think so… some of you are thinking right now.

I explained to my kids that we celebrate Jesus being born at Christmas, and that’s an amazing thing - to celebrate his birth! You could argue that we wouldn’t even have Easter if we did not have Christmas!

But we would not have the eternal hope we have if we did not have Easter.

Without Easter, Christmas is just someone else’s birthday.

Yes today there will be chocolate, and baskets, and an egg hunt in our back yard. There will be hours of family time and food and laughter and hugs. We will truly enjoy today together. But we will remind our young children why we are celebrating today. My seven year old would tell you that it’s because Jesus died on the cross for us. But it’s not just because He died, it’s because he rose again. This is nonsense to many. Others do not know why we believe this. Why do we trust so deeply in something that others joke about and see as complete ridiculousness?

I would say tell me what faith is. Tell me what hope is. Tell me what you think this life is about. Why are we even here? Is this life all there is?

I hope for things in this life, but I have no guarantee of anything of what will happen on this earth. But I have a guarantee in heaven. And that is a hope I can count on. That is why I celebrate. That is why I can go on. Because of this:

1 Peter 1:3-7  (NLT)

The Hope of Eternal Life
3 All praise to God, the Father of our Lord Jesus Christ. It is by his great mercy that we have been born again, because God raised Jesus Christ from the dead. Now we live with great expectation, 4 and we have a priceless inheritance—an inheritance that is kept in heaven for you, pure and undefiled, beyond the reach of change and decay. 5 And through your faith, God is protecting you by his power until you receive this salvation, which is ready to be revealed on the last day for all to see.

6 So be truly glad. There is wonderful joy ahead, even though you must endure many trials for a little while. 7 These trials will show that your faith is genuine. It is being tested as fire tests and purifies gold—though your faith is far more precious than mere gold. So when your faith remains strong through many trials, it will bring you much praise and glory and honor on the day when Jesus Christ is revealed to the whole world.

I pray that my children have an understanding of true hope as they grow up. Because this life is hard. But today gives us a reminder of our hope. Blessings to you and yours on this beautiful Easter morning. Enjoy your families. Enjoy the eggs and chocolate. And be reminded of HOPE.

Hebrews 13:14 NLT
For this world is not our permanent home; we are looking forward to a home yet to come.