Where Lilli Blooms: 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.

Seriously.

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.