What If...My Vacation Anticipation

We are going on vacation next week.

We are gathering our backpacks and making our packing lists. We are booking our museum tours and blocking off our work calendars. We are arguing about what time to leave and which translator app to download. We are also creating a "What if..." journal for Caroline so that we can prepare her for situations outside of the plan.

What if the plane is late?

What if you have to sit on the plane next to someone you don't know?

What if you are hungry and there is nowhere to get a snack?

What if you really have to go to the bathroom but there is no bathroom nearby?

We are walking Caroline through all of these scenarios before packing this journal with us to use when we are traveling. We hope that having these conversations before the trip will decrease the amount of time she experiences a meltdown when we are away. When these "what if" situations arise on our trip, we can use the language in the journal as a way to reassure her she can move forward when she is struggling.

We are checking the weather and deciding which coats to pack and which shoes to bring. We are carefully assessing how much we can fit in our backpacks so we don't have to check any luggage. We are also exchanging space in our own bags so that we can include a package of adult diapers and"Shitten"mitten wipes because Caroline struggles with incontinence and bathroom hygiene. We don't have the space this time to pack our own air mattress and sheets, so we will find the washer and dryer as soon as we get to the hotel because, despite me repeatedly telling Andy that this won't be the first time a hotel has cleaned soiled sheets, he will be embarrassed and won't want to imposition the staff.

We are packing cameras and devices and chargers, chargers and more chargers. We will also pack books and a few markers for Charlotte to help us pass the time when Caroline has a meltdown. We are prepared to set an alarm, and use language from a curriculum called Zone of Regulation, which we have been using for five years, to help her self regulate and manage sensory overload. We will tell her she is in the Red Zone. We will let her know that we can talk to her, or do something fun, when she returns to the Green Zone. We will ask her if she needs a tool to calm down, which we've already agreed to in her "What if" journal. Sometimes she will say yes and we will give her one of her requested tools, like a stuffed animal or a hug. Often she will say no. She will yell and scream and stomp her feet. We stand just near enough that onlookers don't think she is alone and lost. We will do our best ignore the stares and the comments. We will either move on, or one or all of will return to the hotel. Charlotte will use her markers and coloring books as her way of staying patient during these meltdowns because she feels like Caroline ruins everything. I will read a book. Andy will surf the web. We will be angry that we missed out on whatever we'd hoped to do but, with Caroline, this is what we have to do. Sometimes, missing out on something fun is easier than being with a 13-year-old, 200 pound, tantrumming teen.

I can't believe we are finally going on vacation next week. I wish we weren't bringing Caroline. The moment we hit the submit button for the airline tickets, a tiny pit of anxiety emerged in my stomach, growing quickly into a deep sense of dread and regret.

I want to go on vacation. I want to relax, to explore,to step away from the daily grind and to re-charge my batteries. I want to do all of this with Andy and the girls. Except, going on vacation with Caroline isn't relaxing and we often get derailed from exploring. Being with her while traveling empties all of the energy my batteries have, leaving me exhausted and unprepared to face the daily grind upon our return.

I feel incredibly guilty and ungrateful for admitting this. Caroline is my daughter and I love her. I want to look back at photos and see my arm around her, our smiles a reflection of the happiness and togetherness we have created by giving our children these adventures and opportunities. Yet, Andy, Charlotte and I have all held back (or not) tears during a vacation because of Caroline's behavior. We have the photos but what did we sacrifice to get them?

We are starting to venture out without Caroline. We feel a sense of ease that we don't experience when we are with her. Taking time without her gives Charlotte the attention that Caroline's behavior often precludes her from enjoying. We can move through spaces without being noticed. Plans can change and nobody cries. We feel relaxed and recharged. We carry less weight with us, in our backpacks, and in our hearts. Being without Caroline allows us to have more room in our hearts for Caroline when we are with her.

As we prepare for this trip, I am filled with anticipation and excitement mixed with fear and caution. It will be hard. It will test our patience. We will plan and things won't go as planned. Someone will cry. We may all cry.

But "What if".....it's also fun?

*cover photo captures a moment from summer 2019 when Caroline and Charlotte got into a physical altercation on vacation.