Hilton Head Day 1

All my hustle and bustle last week was in preparation for . . . a week at the Sea Pines resort at Hilton Head Island! This week was an incredibly generous gift of friends of ours who lent us their condo as a gift to Thomas after all he has been through. 

This was our first family vacation in over a year.

This was our first "touristy" vacation with all the bells and whistles in so many years I had to look it up: five years ago (2014) we came to this exact island when Joseph (#4) was the baby in arms. Many families never get to go on a fancy vacation, so I, for one, am very grateful to have this experience, even if we're not a "touristy vacation every year" kind of family.

Our younger set of kids had never even been to a beach and the older ones barely remember seeing the ocean.

Mama's breakfast in the condo, when I set off the smoke alarm only twice

On our first morning, we visited the beach! We saw numerous swooping pelicans, a pod of dolphins, and thousands of people.

With what awe I watched Thomas playing in the shin-deep water, him delighted by the smallest things like finding shells the size of my pinky nail or a tiny crab claw. Believe me, if any of our medical professional team are reading this: I was truly thinking of you by faces and specific names as I watched Thomas. I was thinking of how near to death he came. I would post photos here from the worst time in PICU for comparison, but, so far, Chris and I have decided that those photos are too horrific and private. You would look at photos of Thomas at his closest to death--his abdomen opened from one side to another and left that way for about two weeks, him covered in so many wires and tubes and drains that there was almost no skin left to touch, and two IV poles covered in pumps for a couple dozen medications--and you would not know how that child could survive. And then to convalesce in bed for so many months, depressed and with no vision of the future. In contrast, now! Walking with sun bathing his skin, jumping for joy, splashing in God's great ocean! I wish all of Thomas's medical team could have seen it.

In the afternoon, we assigned naps (which lasted variously two to three hours!) to everyone to be rested for a night outing. (Well, Mama didn't get to rest, but I did clean up all the beach supplies and make numerous medical phone calls for appointments later this month, so I just drank coffee.)

We grilled out, including Thomas and David who roasted fake marshmallows over a fake fire. The dinner menu was hamburgers, hot dogs, French fries, roasted broccoli, and ice cream.

I'm not immune from wishing I were thinner, more beautiful, accomplished in a career, well-spoken and gregarious, and all the things. However, when my children announce it's time for a snuggle party with Mama and they all pile on for the most sincere affection, I'm reminded that at least I have the most important joy of all (even if I don't have that other good stuff!).

After Rosary and way past the little ones' bedtimes, we attended the Sea Pines Full Moon Shore Explore! "Discover our beaches under a full moon. Search for nocturnal life, including ghost crabs and other sea creatures, which scurry throughout our dunes and surf system."

A loggerhead turtle's nest marked for preservation

David studying a dried starfish specimen

Mary under the full moon

Travel is hard on Thomas, although we have every reason to hope that as he gets some years on him, his body will be stronger. Right now, we can see his caloric intake goes down significantly. His episodes of dumping syndrome go up significantly (as well as probably postprandial hypoglycemia associated with gastric surgery) because of eating more risky foods (carbohydrates, fats). For every single activity we do, Chris and I have to study the situation ahead of time and make sure it is not too far for Thomas to walk and that there is an easily accessible bathroom nearby (ideally within about two minutes). We sat at the most crowded part of the beach because it was immediately off the boardwalk going up to the bathrooms. When scheduling a dolphin tour, we had to search around online for one with a big enough boat to contain a bathroom (and then call to explain and double-check the accuracy of the advertised boat). Instead of taking the Sea Pines trolley to locations, where we might be stuck on the route and unable to get off to use a bathroom, we drive our private car. There are numerous activities we cannot figure out how to adapt for Thomas so we don't do those things . . . but that is so truly okay. We are here, embracing life, creating memories! All of us can only be certain of today, this moment! Let's live it.