Y’all I’m at the beach for more than a day! Well, it’s only two nights but I’ll take it! I’m away for from home without Jack for the first time since 2018, unreal. This was a reluctant beach trip on my part because of Jack. I don’t like leaving him & upsetting his routine in the slightest, but when you have more than one child, it’s hard to not do that sometimes. Coleman doesn’t care a hill-of-beans whether we go anywhere together, & if I’m honest, Ava doesn’t either-she’s a teen & probably hates her parents right now lol. How I would love to have Jack here with us if his circumstances were different. He would love the ocean, picking up shells, the fireworks people are STILL shooting off, the rides. Unfortunately, it’s hard work taking him anywhere & he physically can’t handle the stimulation. Coming to the beach is a definite treat, I love hot weather, the sun, the fun, but it’s also something I don’t enjoy because it involves lying to Jack about my whereabouts & possibly disrupting his routine & the people that help me out to make this trip possible. On this trip, I brought Ava & two of her friends. This was much needed for Ava more than anyone, I’m fine without ever going anywhere. What I wouldn’t love for Jack to be divinely healed so he to could share in the fun things of life. We’ve enjoyed our first day here. We ate of course, bout had to show a little gal at the hostesses stand of the restaurant what manners were, went to Broadway at the Beach & rode the wild & crazy speedboat. Ava didn’t want to originally ride it, but was glad she did-so much fun. The boat captain drove like me so she was used to it! When the Berry Patch does whatever it does at mine & Lee’s retirement, I’m heading there to get me a job as a captain, wonder if they allow knee driving? A DJ came around with his music & microphone playing Staying Alive while we were waiting in line for the boat ride & just because I wasn’t doing the John Travolta, that man called me out in front of everyone. Out of 200 people, I’m the one that gets called out.
We tried to go to Krispy Kreme & foolishly, they close at 10. Now ain’t that ridiculous? Why at Myrtle Beach would they close so early? Probably couldn’t find any help, oh well, that’s another topic for another time. Now we are sitting on the balcony of our hotel listening to the waves crash at 11:30pm & watching fireworks. It’s nice watching the fireworks considering I didn’t get to see a one of the ones we sponsored for the Fourth of July! I broke the news to Jack about me not coming home as late as possible Tuesday evening telling him Ava wasn’t feeling well & the doctor that is going to be doing her surgery in a few weeks needed to do some testing (she’s having her wisdom teeth extracted soon). I hate lying, I certainly hope that doesn’t come back on me. Jack was sympathetic, but said he didn’t like it. Mama stayed behind to help with Jack overnight & into the morning. Lee gets up very early & has a hard time understandably staying awake while waiting on Jack to go to bed which can get pretty late sometimes & sometimes he doesn’t go to bed at all! I am very thankful & grateful for Lee, Mama, & Sherry (Jack’s main caregiver) who have made this trip possible.
Our plans for our only full day here on Wednesday are to lay out (such a southern term), go parasailing, find oceanfront dining if possible for supper, & trying to get a Hot Now Krispy Kreme doughnut. Note: I don’t even eat them, just trying to give them the full beach experience. All people love KK doughnuts except me. I was telling Mama late one night about how hungry I was, she said “well, I normal person would eat a bowl of cereal”. I asked why I wasn’t normal, I hate cereal, too. Give me a raw turnip with salt or a cucumber at midnight & I’m satisfied! It’s so peaceful sitting on the balcony listening to the ocean, but melancholy at the same time knowing half your heart is back in Ellerbe & being lied to. Also, Teddy went to training school today so he won’t be home when we get back, I’m super bummed but he needs some schooling! I bet he thinks we’ve abandoned him.
Many of you have asked how Jack is doing & the news isn’t great. He’s hanging in there but totally out of the popcorn phase. I knew it would come but I was sure hoping it wouldn’t. The eating he was doing has come to a near halt. He once again got backed up because of the lack of food intake, liquid intake, & not willing to take his meds like he’s supposed to. After many attempts to make him poo, he finally did but it only stimulated his appetite a little. These cycles are a commonality with Dravet. I’m just hoping he doesn’t get in the same shape he did before his hospital stay a while back. I’m praying his appetite will become stimulated again. It’s all or nothing for Jack. I’ve got some tools in my back pocket I can use & will at the end of the week if things aren’t looking better with his eating. The ups & downs of this syndrome change like the wind. Jack had a virtual appointment with his new doctor as well as labs & a chest X-ray last week. All was great with those, good news! I was actually very concerned that his hemoglobin was dropping again but it hadn’t. I was also beginning to wonder if I was going to be able to make it on our beach trip, Jack turned very irritable over the last few days, but he has since normalized.
Y’all join me in prayer that Jack’s appetite will increase if you will. Also pray for us as we parasail…I’m skeered! I’m actually more nervous about being in the ocean water when we come down because I do not like being in water I can’t see through. It feels weird not being at home as I have now just crawled in the bed of our hotel room. There is no shutting down of Jack’s room, unloading piles of Power Ranger toys off his bed, I won’t have a baby monitor to listen out for, or peach cobblers to make. It also feels dirty, like just plum dirty. I don’t like others peoples stuff. Y’all know my experience with the one bedbug, I’m always worried about getting another one or 500 because I’m pretty sure insurance won’t cover me burning down the house in case we get an infestation! We also get breakfast here complimentary which I haven’t eaten breakfast in years. And I can’t believe I forgot my floss, I feel even dirtier now! Night y’all or good morning depending on when you read this. 👙🐬🐠☀️🌊