Panic Room

Unfortunately this is not a movie review for Jodi Fosters “Panic Room”, it’s a live video feed of my bull in a china shop. Jack goes through various cycles, both good cycles & bad. The bad ones are more often than not. I have a confession, I have a panic room, my panic room is my bathroom. Not an ideal space to spend the morning hours in hiding, but it works for the most part. I’ve been in the panic room because I was frightened about his behavior before, but not in a while, it’s more of a hiding space when Jack becomes too aggravating to deal with. My mornings are like being hunted down by Big Baby in the “Toy Story” movie. I think of Jack as a giant two year old in many respects, and in others he’s a regular teenager.

I videoed me hiding out in my panic room this morning. Jack was wanting my attention & I was trying to get ready for the day. He was talking about getting a crowbar & busting down the door. I’ve seen Jack’s strength firsthand, the boy don’t need a crowbar to bust through the door! It’s times like these that I am thankful Coleman & Ava are in school.

The simple things that most find cheerful & joyful are heart-shattering to me. I found myself crying over an episode of Trisha Yearwoods cooking show. Trisha was cooking for her niece who is a nurse or doctor & other employees at the hospital because they were working during Thanksgiving. I would love to do that for Coleman & his suitemates or random people, but it just doesn’t fit into my timeline with Jack. I watched a video Jack made of himself singing Frosty the Snowman tonight, it broke my heart. As he continues to divulge in his addiction to the computer & inappropriate things, here he is singing Frosty. I’ll never sleep tonight thinking about that (it’s after 12:30am now). I look around at other families with a longing heart because we can’t have the togetherness they share at a dinner table, on vacation, or anywhere. Any move made outside of the home, we pay for a sitter or one of us stays behind. As your kids get older, they stay with friends, family, or home alone, we don’t have that luxury. We have to leave our house in order to have some sort reprieve. Your home is your safe haven & for us it’s The Berry Patch, a ballgame or a restaurant. Have you ever came home from work & wanted to collapse & do just that? I never have unless I have been deathly sick which doesn’t happen often thank goodness. As soon as I walk through the door, I become Jack’s butler fetching food, his remote, watching tv with him if his cycle allows for that, drink refills…perhaps he’s related to diva Mirah Carey! I have to drug him to get him to sleep, which causes me to be sad & happy all at the same time.

I have a friend that teases me about going to Southern Pines all the time. For those that don’t know about our area geographically, Southern Pines houses stores like TJ Maxx, Ross, a fabulous Belk (the store of southern women), & good restaurants. It’s about 30 minutes from the house. My posse (Ava & Mama) go to Southern Pines once every 10-14 days. It’s called our escape. Ava used to hate shopping when she was younger. When she was around 4 years old, we headed out to Southern Pines for a day of shopping, she cried out in the car, “I wish Ellerbe had a Southern Pines”. That is still the funniest thing to me. I hate having to leaving our home in order to enjoy myself & enjoyment can’t be fully experienced since I am continuously worried that Jack will have an altercation while I’m gone.

The happiness & safety of our children is of utmost importance to Lee & myself. Coleman is making his mark at State, involved in clubs, meeting new friends, checking out the downtown scene, pulling all-nighters, loving life. What a blessing that is for us. We want the kids to succeed, but being joyful & in a safe environment is what we truly want for both Coleman & Ava. Coleman & Ava only know mayhem. They have faced maybemhead-on every single day for most of their lives. I miss Coleman tremendously, but I am over the moon elated that he is experiencing something we weren’t able to provide. The type of turmoil they have gone through had to be a driving force for Coleman. His success was something he could control & he did it so well. All children are different, but Coleman & Ava are so much alike personality wise. Coleman is the computer expert, whereas Ava is the athlete. My prayer is that they can find love, fun, & a safe haven wherever life takes them.

With the Christmas season nearly among us & the little Hallmark Christmas movies are streaming 24/7, they make me sad. I want a cozy fire, cute Christmas outfits, perfect Christmas decorations, snowfall, & those delicious Christmas cookies that adorn every table in those movies. Every one of those movies are the same. Busy female executive or flower/bakery owner or Christmas shop either struggling to find the meaning or has a ton of Christmas spirit, falls for old flame or town bed & breakfast owner, they have a misunderstanding & in the last five minutes of the movie, love prevails once again & they live happily ever after. Instead, my movie life is something from the Sci-Fi network!

Speaking of Christmas, I have toyed with the idea of getting an artificial tree. Now this goes against ever fiber of my being. First of all the chemicals in the making of those trees is ridic, secondly, we like to support farmers & local businesses, & I love the smell of a Frasier Fur. This season is very different from last year. Last year at this time, Jack had lost 25% of his body weight in a few short months, his behavior was out of control, he was not drinking any liquids nor was he getting out of the bed for days at a time even to urinate. Jack didn’t go with us last year to pick out our Christmas tree at Lindsey’s Christmas tree shop since he had no desire to leave his bed (all this was due to the side effects from the medication trial of Epidiolex aka medical marijuana). Jack was reminiscing about last years Christmas a few days ago & said, he couldn’t wait to get some of Lindsey’s hot chocolate like he did last year. This is a kid that doesn’t forget anything, just an example of how messed up he was last year both mentally & physically & the reason why I won’t be getting an artificial tree this season…hot chocolate memories. He gets so excited about Christmas, that just a few years ago at Lindsey’s while we were picking out our tree, he had a seizure. What a life, we are often damned if we do & damned if we don’t.

With the holidays around the corner, remember to be thankful for your many blessings. For some, it’s hard to find the blessings. I know Lee & myself have struggled with this because Jack’s diagnosis is so complex & tiring. This year, my favorite blessings are Coleman relishing his school experience, Ava adoring her junior high school scene immensely, & a few sweet moments with Jack recently. If you become stressed during the holidays over having to run here & there or become snappy because no one helped you in the kitchen or you drop the turkey, remember this…be thankful you don’t have to be in a panic room.

Author: dravetsyndromeblog

44 year old Mama of three kids, wife of a farmer, & business owner.

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