Quirky

Life with Cole is kind of like being all of your childhood dream jobs at once. I am a Mommy, first and foremost, a detective (super spy), a doctor (I'm not a real one, I just play one on TV), a legal expert (lawyer), blogger (writer) and I am not sure how to throw Marine Biologist/Veterinarian or ranch owner in there, but we could give it a try!

Dravet Syndrome is so complex. There is not a lot of research and each kid is different. Cole changes so fast, that once we feel like we understand what his triggers are, they are different again.

So, you will find random displays like this through out our house.What? You don't cover your oven door with tinfoil?

The pattern on the door is a trigger for Cole. We wondered why he would have more seizures each time he was in the kitchen. We put blinds on the windows, a rug with no pattern on the floor, etc trying to figure it out. Yet, he still had more seizures each time he walked into our new kitchen. I figured it out on Friday! The pattern on the oven door set his brain off and overloaded it to the point that it just shuts on and off. He was stuck in front of it just repeating the same thing over and over again. I moved him, it stopped. SO-the reasoning for our lovely cover-up.
To the average eye, it just looks like an old, dirty oven door. *believe me, it is clean, those stains won't come off* But to Cole's eyes, he sees something more like thisand it makes him feel trippy like those pictures from grade school that you would put up to your nose and then pull out slowly so that a 3-D pattern would emerge. What happened to those anyway? Maybe they caused seizures? ;) Still looking for a better solution than our masking tape and tinfoil, but it is hard to make changes when you are renting. We have had great suggestions from friends and even considered buying a new appliance since this one is sub-par anyway, but it is not in the budget.

This used to happen with the skylight in our bathroom at our old house. We thought it was just being in the bath tub, since Cole is temperature sensitive. Over time, we got closer and closer to the real reason and figured it was when he extended his neck, looking up, and the shadow pattern from the textured skylight cover. Yet another beautiful tinfoil cover up was instigated. This process of elimination can be tiring. It has brought us closer and closer to helping Cole have as few seizures as possible, and we will do almost anything to prevent seizures. We still have to live life. If we were not so involved, we would not have figured out the light sensitivity and got his special FL41 glasses, etc. There is always a question in the back of your mind though, "What is causing this one?".

So yes, my son is quirky. He can't go outside, because he will get too hot or too cold, causing seizures. He can not be by a window, because natural light causes seizures. He can't look at my mom's rug, because it causes seizures. He can not ride in a car without tinted windows, he can not get too close to the television, he can not put his head all of the way back, he can not look at a solid blue screen, he can not do this, can not do that. BUT he can capture your heart and make you want to do anything in your power to give him the best life possible.

So, if anyone is interested in building me a house with a large room that is all white, with no patterns, with deeply tinted windows, soft washable fabrics, that we can spend all day, every day in...call me. It needs a built-in television that is the perfect height and has an anti-glare screen, It needs soft carpet in case he seizes. It will have to have lots of high outlets, so I can plug in his feeding pump and oxygen concentrator, but they can not be low enough for him to stick objects into (I swear this kid is going to electrocute himself). It needs good access to the front door in case the paramedics come, with wide hallways for when we get a wheelchair. A kitchen with wide granite counter tops for all of my cutting and prepping and that wonderful scale of his..and a locked door so he can not sneak food, steal my spoons, or try and play with my knifes. An indoor salt water swimming pool so he could resume his favorite activity. A state of the art heating and cooling system so we can change each room to be the perfect temperature. Heck, lets throw an air filter system in there to eliminate airborne illnesses as much as possible. No stairs. A big area for prepping and dispensing medications. A room that has a large, low to the floor bed, equipped with a seizure monitor, pulse oximeter and night vision camera to let us see if he is seizing. Add a comfy chair in that room for the nurse if we are dreaming. An attached garage, since going from inside to outside and vice versa is a hard transition for Cole. A fenced yard for our service dog. Okay, I'll stop now...but you get the picture.

Nothing is ever going to be perfect in our life. Heck, I have yet to meet anyone who truly feels their life is perfect even if they are one of those that seemingly have "everything". Life is a journey. This journey of ours just seems to have more twists and turns than the average road. Yet, we have been given the opportunity and privilege to keep Cole home. There are so many people out there whose children end up living in the hospital, or spending months at a time in ICU. The longest we have ever been there is a couple of weeks. Point is, we know our hospital stays are not over, by a long shot-but compared to others, we have had few. We have two friends that have been in the ICU in the last week for get this, strep throat. Yep, the red itchy throat that everyone gets...sent Dravet kids to the PICU! We also understand that there are more "quirks" that will show up. Who knows, maybe it will be the new curtains I finally put in the living room? At least we can keep him here with us, instead of in a care facility. For now, we are on the hunt, being detectives to make his life as seizure-free as possible.