Raising a special needs child with Dravet Syndrome, a form of epilepsy, behavior, sleep, & eating issues. Also the wife of a farmer & two other kids.
Haircuts can make or break a person. They can leave you on a high for weeks or leave you sulking at home with a bag over your head. The color can turn out perfectly, only the next time to turn a hideous tone of green ash (hairstylists will not be named). We have all been on the receiving end of haircut chaos, I have been on that end too many times. Jennifer Aniston of Friends had one of the most sought after styles at one time during the Friends hay day. I, like many women around the world wished for this. It was one of the first times I cut my long mane by choice, the other was because there was a lice outbreak while I was in 3rd grade & I was the poster child for the product RID. So, Mama took me to the local beautician for a short cut (talk about ugly). During my first by choice short shag Jennifer do, it looked great, just what I was looking for. However, when I went back for a shape-up, the stylist was not herself that day. She kept whacking & whacking. I left the salon praying that I could do something with my mess of a head when I got home. I could not! My hair looked like it had been cut by a three year old with safety scissors! I was 25 at the time & pregnant with Jack, the pregnancy kept me from being incarcerated. I was fighting mad! This woman ruined my hair. I stayed up all night long thinking how I could get revenge. I thought of cutting her tires & even toyed with the idea of giving her beautiful long mane a “shaping”. But I resisted because I knew my ugly hair & orange jumpsuit would not be a great combo! I did cancel her check then called to tell her why. This was the very last time I ever cut my hair-outside of the occasional trim. I will be old & gray with long hair, I refuse to cut it short when I get old & get weekly sets. Maybe my side braid will be in style forever. Pictured below is my less than favorable “cut” & Coleman.
Here’s the point of the title described in this paragraph. It is such a struggle to get Jack to get a haircut. As most of you know, he rarely leaves the house & cutting his hair means he has to shower afterwards to get all the hair off, in which he hates to shower. He was counting on getting a trim last Tuesday, but the beautician couldn’t get to him then & he had to wait until the next day. Big mistake to tell him this. What occurred on Wednesday is one of the many ugly sides of Dravet. That ugly side is called excitement. Jack was so worked up about getting his haircut, that he woke up at 6:30am plus, he didn’t go to sleep until 12:30am. He usually awakens around 9:30 every morning. When was the last time a child of yours could not sleep or contain his or her excitement over a haircut…never! There is something with Dravet kids that make them more sensitive to anything out of the ordinary or even things that are ordinary. When Jack was smaller, I would never tell him it was his birthday until right before the party because A. he would seize and B. he would tear down the house in excitement, but it never failed, he always had a seizure during his celebration. During his early morning rising, Jack wanted to go sit outside on the porch, eat grits, talk 100mph, & run through the house like a chicken with his head cut off, all from a simple haircut.
Some of the other obstacles people face with Dravet other than multiple seizure types & the huge frequency of seizures, are sensitivity to heat which has to deal with their body not being able to properly regulate body temperature which often results in seizures, bone problems, over excitement, & of course our biggest obstacle, behavior difficulties.
After feeling deflated & worn out, none of that mattered after our Sunday evening. Jack wished to go to Sonic. He loves going there because he gets out of the car, pushes the button to order & gets to swipe my card-highlight of his life! Buttons are everything! After eating his coney dog, we searched for Pokémon’s in the area (I didn’t realize this game was still going on), we got back home & Ava, Jack, & myself hung out on our bed just like old times. Our bed used to be the hub. Since Jack was really bound inside most of the time due to the heat, we would watch tv in my room, do puzzles on the bed, color, play. It’s been so long since we’ve done any of that due to the changes in Jack’s behavior. I was even able to get a snapshot of the three of us piled up in our room. This is the first shot of Jack with one of us in a long time.
Sadly, that happy memory was disrupted the next morning when I was purely tormented & tortured by Jack. I’ve mentioned before how he claws like a tiger on my stomach & back. For 10 straight minutes, he stood in the kitchen doing this to me. His durn nails are like razor blades! No matter how much I pleaded with him to stop, he continued & got stronger. All I could do was stand there & take it & once he finally left me alone, I cried. My reality is not a pretty one. Every morning I am forced to be a prisoner in my bed because if Jack hears me, he’ll wake up. I want him to sleep as long as possible, he has better days when he does. Then I have to deal with trying to find inventive ways for him to take his medications while being clawed & kicked at. While I’m trying to get ready for work, he’s constantly harassing me. I absolutely hate mornings. I am currently accepting donations for a suit of armor! If he is up & out of his room, he is touching me. Whether it’s his feet or hands, it’s always annoying. People ask sometimes why do I play softball. The answers are easy, I love it & it gets me out for few hours in the evening during summer & fall. A little social interaction helps my sanity greatly.
Every single day, it’s something (if I ever get a tattoo, it will be the phrase, it’s always something). I long for a simplistic life. A life where we are all free to roam our own home without being pounced on like a tiger looking for his next meal in the jungle. Pray people. Pray that Jack will learn to keep his hands to himself. This would take a great burden off our lives. Thank you for reading my blogs & for all the prayers, thoughts, & love. We appreciate you all more than you know. 💜💜💜 And remember if you get a bad haircut or color, hats are currently in style!