Whenever I finish a blog, I always wonder how on earth will I ever be able to write another one, hasn’t nearly everything possible happened to us? From Jack’s crazy tales to my occasional weirdo run-ins, how can I continue to write anything ever again. Jack gives me plenty of inspiration that’s for sure! This particular blog is a result of Jack’s newest fascination, it is quite possible the best food ever, bacon! At The Berry Patch, we sell some of the best bacon money can buy, it’s also a little on the pricey side. Jack has gone through over $20 in bacon in merely two days! He doesn’t want it microwaved or fried in a pan, his Highness requires it to be baked in the oven. This is my fault, it’s the only way to properly cook bacon in my opinion. I’ve raised food snobs! Jack was previously on a Funyun & grits kick, now he’s moved onto egg & bacon sandwiches with extra mayo. The reason I titled this blog “Breakfast for Hitler” is because dealing with Jack is what I envision working for Hitler was like. He’s extremely bossy, it’s Jack’s way or no way, freshness is of the upmost importance, if you don’t comply to his needs, your life may be at risk.
Dravet Syndrome is a huge melting pot of different symptoms & problems, I’ve touched on a few of them in previous blogs. One biggie is nutrional difficulties & poor eating habits. Some of it is medication induced, the other is from the syndrome itself. Several medications make Jack’s appetite fade. Jack doesn’t love to eat like a lot of us do. I often am not finished with one meal while thinking about my next. What is so frustrating about his dislike for food, is not only the expense it takes to satisfy his need for food which is only a need, not a want most of the time, but the time it takes to prepare whatever it is he is wanting. Breakfast for Hitler starts around 11am after he wakes. The demands for the perfectly fried egg that has been salted & peppered correctly, baked bacon, & extra mayo all on a fresh loaf of bread no less. Most days, the sandwich lays on his bed for a full twelve hours. At 11:30pm-midnight, he starts again with wanting yet another freshly made sandwich. So in order not to be on Hitlers bad side, the whole process starts over again. By the time the sandwich is prepared, his sleeping pills have kicked in (thank goodness) & only a bite has been taken out of the sandwich. This is how I often find Jack & his sandwich most nights:
And I best not dare think of trying to save that same sandwich for the next day.
I am so surprised Jack has been craving loaf bread sandwiches. He hated loaf bread at one time, as do I. I used to eat it when I was very little but only on tomato sandwiches, I never could stomach bologna or ham sandwiches like normal people. My lunches would have to be packed with the bread separate & tomato slices separately so the bread wouldn’t get soggy. I was such a bougie kid even in kindergarten! I only took my lunch when the lunchroom served typical kid lunches like pb&j sandwiches, pizza, or chicken nuggets. That was not touching my lips! I would however indulge in succotash, chili, vegetable soup, & any type of vegetable, plus ask for my friends since none of them ate like Jethro Bodine! My aversion towards loaf bread changed when I lost my first tooth on a tomato sandwich in the cafeteria during lunch that my Mama begrudgingly packed for me-I’m sure she was cussing me in her head…”why does she have to be so difficult, there ain’t no sense in a kindergarten child making me go to this much trouble for a school lunch” is what I envision her saying. I know, because I am living it, lol. My tooth came out right on top of my tomato sandwich & I was immediately grossed out & since developed a fear of loaf bread. Now, I require artisan bread which is funny since it will literally tear your teeth out & slice up your gums all in one! I also hate loaf bread because it can taste like fabric softener sometimes (I am strange, remember this).
Being head chef of the Berry family, purchasing loaf bread isn’t normally on my grocery list, until now that is. I’m so shocked when Jack chooses to eat, he is eating this. When he was only one, just after his first birthday, Jack began the ketogenic diet as a treatment for the horrific amount of seizures he incurred every day. When I say 100’s per day, I literally mean just that. The ketogenic diet isn’t like the keto diet many are on now. Everything from lotions, to toothpaste, soap, had to be configured in because these products can have a form of sugar in them. Jack’s food had to be weighed out in grams (small grams at that), he had to eat at specific times each day, & could only drink a limited amount of fluid which was either water or diet drinks. One of Jack’s meals was 1 & 1/2 pieces of bacon, a spoonful of mayo, & like 7 green beans. This was an entire meal! We did this so frequently because the others were almost too gross. Bacon was nearly all he ate for breakfast, lunch, & dinner. Jack went straight from breast milk to this diet, which worked out perfectly since he hadn’t really been introduced to cake, ice cream & the normal toddler foods. The diet was the cure we were looking for. He was weaned off all medications that had failed him & was able to live normally for 2.5 years. That was until he woke one morning with a terribly high fever from strep & the seizures came back with a vengeance. The diet was weaned & he was able to eat our regular diets. Due to the lack of sugars & starches early in life, Jack never did like either. He became bougie like me! Jack wouldn’t touch bacon for years after that. This is why it’s so surprising to us that he’s eating it again.
Tonight we had to take Hitler to Pekin Wok a local Chinese restaurant that none of us like but Jack. Then he had to go to GameStop to buy something that he just brought in to sale to them on Sunday. He sold GameStop a game on Sunday that he owned, then went back today to buy the same game again. Totally lost money on that deal. No amount of explaining will help him understand the foolishness he is doing & the amount of money he is losing. Then he had to go to Highway 55 to get a milkshake. Keep in mind, we own an ice cream shop that has delicious homemade milkshakes, of course that wouldn’t do. The name of Jack’s game is how to spend money. Two hours later, the milkshake was still full & untouched. Before we ever made it to the restaurant tonight, Jack was already talking about eating his bacon, egg, & extra mayo sandwich!
Those that keep up with my blogs know that Jack had an altercation with me a few weeks ago. I knew that turning 18 was going to be a difficult bridge to cross for us all. The anticipation of Jack turning 18 while waiting on significant life changes to occur proved to be pretty deflating for Jack. Though he would never be able to express those feelings, I know that’s what happened. He has always heard that turning 18 means you’re an adult, you don’t have to listen to rules any more, etc. The anticipation of something great happening in Jack’s life was expressed in rage, unsettledness, & irritability. All of these emotions we had to deal with from August 2 to right up until yesterday, August 21. The look in his eyes is changing to a calmer color. Before, his eyes were the color of rage.
In closing, I’d like to thank you all again for the prayers & concern for not only Jack, but for each of us. We are so thankful for the experiences Coleman has had the opportunity to enjoy this past year. I sometimes imagine being him, because he really is living his best life. He has a beautiful apartment in Raleigh overlooking the coolest pool, has amazing opportunities in every corner, & is having fun. Ava is ready to start back school-what child wants to start back school…a child that lives in our house! She said the other day, this has been a great summer. It’s been great because of other people-our friends & family. So thank you again to all that made this child’s summer great! Don’t mind me, I’ll be in the kitchen preparing Hitlers breakfast!