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Our family just wrapped a big weeklong summer vacation. It was a marathon. Can anyone relate? The packing… the maneuvering… the stress… and the fun, too, of course. On the trip: My husband and me, our girls Elsa (4.5 year old with WHS), Cecilia (3 years) and Lola (1.5 years), and 15 immediate family members in a big lake house in Missouri. Here’s a little of what it entailed:

Elsa’s Packing List

Feeding & Medicine: I always start here, when heading out on a trip. Packing up the essentials. All of Elsa’s food and meds (Peptamen Jr. 1.5, Depakene, Prevacid, Culturelle, Tylenol, Motrin), food accessories (pump, stand, hanging bags, syringes, extensions), emergency stuff (Diastat, extra tube), and rags for drools, spills and daytime feeds). For daytime feeds, I am helpless without my small 5-ounce Medela bottles. They haven’t held traditional milk for a while now. But the yellow screw-on lids are perfect for tossing in a bag. I usually fill one with her Peptamen feed, and the other with flush water.

Gear & Equipment: This is always a big convo with me and my other half, on every trip we undertake. There is only so much room in our minivan, and at the place we are heading to. This time, we did her new wheelchair (which breaks down pretty well) and her stander. (Gait trainer almost made the cut, but sometimes she just hangs in it instead of bearing weight, so we opted against it.) AFOs definitely were in the suitcase and got use. We also packed a soft blanket, so Elsa could stretch out on the floor when we were hanging around the house.

Water Play Items: Our trip included lots of pool time, boat time and dock time. A fun but intimidating trifecta. Elsa wears a puddle jumper life preserver for most of these activities. The dock and the pool are tricky locations. But we had a lot of extra hands with our three girls. (We quite literally couldn’t have done it any other way.) Elsa is able to hang out inside of an infant tube floatation ring (her legs come through the “saddle” in the center of the tube). That works pretty well, although she has to be watched every moment or she will go head-first into the water. We also brought a thick all-weather picnic blanket for lying out at the pool. Lying on concrete isn’t ideal for her, but pool chairs don’t offer any safety or support, and we needed an option that gave her (and us) a little independence, if even for just a few minutes.

(Elsa is second from the right, in the pink hat and yellow tube.)

Random Stuff: We packed her PODD book for communicating and her favorite stuffed animal (which sings). For sleeping, we have a blow-up bed that is made by a brand called Intex. We got it at Aldi. It is AWESOME. I highly recommend it. It’s a toddler-sized rectangular-shaped bed with a low depth and low wall to it, which keeps her from rolling out. And you can get the food pump stand really close so that there is enough slack for nighttime feeds.

Sun, Sunscreen & Snafus

Sun and sunscreen proved to be our biggest foes. Elsa’s light blue eyes are sensitive to sun. When she is in full sun, all she can think about is getting out of it. She doesn’t like wearing sunglasses, so shade was our best friend. We rearranged pool furniture to create some shade in the kiddie pool. And her tie-on sun hat also gave her relief.

Then, the sunscreen. It ended up in her eyes in several ways. First, she rubbed her sunscreen-covered arms on her eyes. Then she rubbed her eyes on my sunscreen-covered shoulder. I had to pour bottled water in her eyes to flush it all out. It was a rough moment.

Add to these two issues with the fact that there is really nowhere for Elsa  to go in the pool without being held (she’s not walking, and doesn’t like to practice walking on the roughly textured pool steps). Plus at the pool it’s hot, it’s sticky, and she’s not even having fun, really. When it all came to a head on our second pool day, I couldn’t help but cry. I want so badly for her, and for me too, to be able to enjoy the simple pleasure of a trip to the pool.

Once she got somewhat comfortable at the pool, we did some floating and worked on range-of-motion and stretching in the pool. I’m not sure she liked it, but I so wanted her to have some non-stressful pool experiences. If nothing else, it further bonded us. We go through it all together and share a mutual, unspoken patience with each other. I’m so grateful and blessed for this!

(Elsa is in the center, pictured with her two sisters.)

ADA Lesson Learned

We went on a cave tour that was supposed to be wheelchair accessible. I’m not sure why it was labeled this way. Elsa’s wheelchair is really resilient, but the pitch black, and on a lantern-guided tour over wet gravel and broken pavement, it basically impossible. What was I thinking? It is a cave, after all. Momma learned her lesson! I will take the wheelchair accessible label with a grain of salt and always call ahead and ensure that there is continuous pavement.

I realized on this trip, too, that Elsa is no longer a baby or a toddler. I need to start investigating activities and seeking out venues that will be particularly good for kids with special needs. Accepting this fact is something that I’m sure I’ve been avoiding for quite a while.

Vacation Reflection

Quality time with cousins, aunts, uncles and grandparents was the best – for Elsa, and for all of us. The dock and boat were highlights. These were the most relaxing times. In the lake, with proper supervision, Elsa will just chill (if somewhat in the shade). She seemed really calm in the lake water. And she loved the bumps and wind-in-the-hair feeling of the boat rides. Next vacation, we hope to get her in the tube with her dad on a (cautious, slow) tube ride. We think she’d love it!

As the trip came to a close (and it really was a great trip, truly), I couldn’t help but worry some about what the next few summers might look like, if Elsa doesn’t start walking. She is getting heavier all the time, and when she’s slippery, it is extra challenging. On and off the dock. Up and down rough, hilly terrain. I don’t want to limit what we do as a family. Lake life is something both sides of our families love. But I want Elsa to be safe, and I don’t want the entire outing to be about “getting through.” I want to simply make fun memories together. Guess we will cross that bridge when we come to it!