Palm Springs Getaway: Special Needs Family

We went on a trip! It was a small one, but we got out of the house and we enjoyed ourselves!! Going anywhere with Luke is hard; it takes a lot of planning, monitoring, and work, but it was worth it.

This past weekend we went to Palm Springs and rented an Airbnb. This was the third time we got away since the pandemic and every time it seems to be harder. Before we decide to go anywhere we look at the weather and ability to access emergency response. Last winter we went to Big Bear and in the middle of a snow storm we had to call 911. We learned that we can't take this chance again and we won't be taking any snow trips any time soon. As I was saying, location and access to medical care is the first concern. Once we figure that out we decide if a house or a hotel would be more beneficial. Then we have to decide if the location is wheelchair friendly and can accommodate all of Luke's needs. After all of this we decide when the time would be best and if Luke is feeling well enough to go.

After deciding on Palm Spring and finding a house the planning begins! This means many lists from Luke's medical equipment, feeding needs, clothes, and medication; along with packing for a three month old and a four year old. I tend to over pack every time we go on a trip, but it seems like this is no longer something I can do. The amount of things we need to fit in our Expedition Max can easily get out of hand. Having three kids has really shrunk the space we used to have when traveling.

Part of preparing for a trip is making list after list after list

I started my list a week before in order to avoid packing at the last minute. Hint hint, it did not happen. I was packing at three in the morning the night before. Going back to my list. On my list I have mini lists that are for Luke’s food, Luke's medications, Luke’s equipment, Luke’s clothes and toiletries, Mia’s clothes and toiletries, Micah’s clothes and baby products, and my stuff. I also have a list of all the food and electrical needs (laptop, phones, speaker, etc.). After I do this, I separate all of the clothes the kids are taking and I put them into baskets. I add to the basket anything I need to pack for them and then I organize everything into packing cubes. This helps me put everything in a large luggage without having everything get mixed up.

I started this process thinking that the cubes would help me fit everything into the luggage. But it was way too much and the huge luggage would not zip. This didn’t even include mine or Adrian's things. The hard part is fitting all those darn diapers! There's just so many and it takes up so much room. If it wasn’t for those diapers everything would fit. So I had to give the diapers their own small carry-on luggage. Eventually everything fit. Now comes the next hard part and that’s fitting everything into the Expedition.

Fitting everything into the truck is like a game of Tetris.

Initially Adrian was going to pack the truck but he’s never been good at Tetris. It’s hard to paint a visual picture but he does not maximize the space well, so I took over and packed the truck. Here is what needed to fit into the Expedition. One blow up mattress, a bassinet, one large luggage, two small carry-on luggages, Luke’s bath chair, Luke’s wheelchair, a bouncer, a duffle bag, a small backpack and two diaper bags. Phew! Just writing it takes a lot! The truck has three rows and the first two are taken, along with one seat of the last row for Mia. We put two seats from the third row down to extend the luggage space. First I packed the blow up mattress across as wide as the truck, then I stacked the bassinet on top, then I added the large luggage behind the mattress, and then I added one small luggage, and behind that the wheelchair. This thing weighs over fifty pounds and they still take up a lot of space. After that I stacked that bath chair on top of everything and then the bouncer. Lastly, I squeezed the small luggage (you know the one with a million diapers) next to the wheelchair. The duffel bag went on the front passenger seat with the backpack and on the floor of the second row were the two diaper bags and Luke's feeding bag. As you can imagine the truck got crammed quick, but everything fit and we didn't need to put anything on the roof.

We go off of Luke's timeline even if it means leaving later than expected

Leaving the house was also a mission. We were supposed to leave at 11:30am and did not leave until 2:00pm. After we packed the truck and were ready to leave Luke started getting seizures. When this happens there is not much we can do to hurry the process except make him comfortable. Luke got a cluster of seizures that lasted over thirty minutes and were not slowing down. Due to this, we had to administer emergency medication to stop the seizure. This is always difficult because when Luke gets this emergency medication he is out for the next few days. The seizure tires him out and he struggles to stay awake. Adrian and I knew that the most important thing was to help Luke feel better so we gave him the medication. Once we gave it to him within three minutes he was fast asleep and relaxed. He ate and was asleep until we got to our destination three hours later.

Mia refuses to use the restroom...

Let's back up, after we took care of Luke and got him settled into the car (I always ride in the back with the boys) we needed to get gas. Well, Amelia had to go to the restroom so we took her to the gas station restroom. If you know Mia you know how much of a Princess/Diva she is so she refused to go to the restroom stating that she didn't need to go anymore. We tried to make her go and nope she was not. She made comments like “why does it stink in here? Why is it so dirty?”. This girl is something else! We couldn't wait anymore so we got in the car. After driving for a few minutes she tells me...

Mia: Mommy my tummy hurts and I have to go to the restroom, but don't worry I can hold it until we get to Palm Springs”

Me: Sigh! Mia do you have to go poop?

Mia: Yes mommy but I can hold it, my poop is coming but just a little bit I can hold it.

Me: Mia this is a very long trip you can't hold it. You have to go.

Mia: Does Palm Springs have stinky bathrooms or are they clean?

I look at Adrian and we have to stop. A four year old doesn't understand that the trip is over two hours. So we stop at my mother-in-law’s house and she finally goes. By this time Adrian’s patience was running thin because he hadn’t eaten all day, so we stopped to get food. Finally, off we go two hours late to Palm Springs.

It was all worth it.

Getting away was really nice. The house was big and Amelia was in the pool all weekend. This house was perfect for a Palm Springs getaway. The backyard opened up to the golf course and the pool had a waterfall that provided that perfect relaxing sound. Micah went into the water for the first time and he hated it. The second time he lasted a few minutes longer. The weather was the perfect weather for Luke. He runs at ninety seven degrees so he is always cold. It was in the high 90’s there and it was perfect for him to relax on a lounge chair. We listened to music, drank a little, ate a lot and basically relaxed all weekend. Luke still had his struggles, Mia still got in trouble, and Micah still cried a lot but that’s our family. Getting away and recharging our batteries was the perfect start to this summer.