Big white house

When I was a little girl, even a young adult, I admired large houses with neat yards, swimming pools, nice cars. This meant to me that the folks that lived there were people that didn’t have any problems, lived a comfortable life, had no worries. Now of course, I know this to not be true. There’s a house in Pinehurst that I would love to have. To me, the house screams security, safety, calm, peace. It has lots of windows, lots of trees, the yard is peaceful looking, it looks like a dream, but who really knows what goes on in that house. There could be secrets in those closets so disturbing that could become national news. There could be an abusive husband that lives there, a person with a terminal illness may live there, the possibilities are endless. I like to think the best, so I’m going with the idea that the people that live there have an amazing life. I’m more of a Pink Houses type of gal-it’s a song by John Mellencamp if you’re not familiar with. Irony, it is a funny thing! My last blog was titled Jack & Diane, yet another song by Mr. Mellencamp. Who knew that I would write two blogs back to back centered around his songs. Thankfully, Jack & the person “Diane” he was being scammed by faded. Jack’s behaviors are very cyclic, some cycles lasting longer than others & vice versa. We never know what we’re going to wake up facing on a daily basis, even an hourly basis. As a follow-up from the last blog, “Diane” some how, some way, got the phone numbers for several people in Jack’s contacts. He foolishly gave the person his login info for CashApp, which I think the person was able to find contacts via that app. I don’t know why these scammers are so stupid. “Diane” sent messages to several people in Jack’s contacts asking for their friendship. My sister Jodie happened to be one of those. She asked “Diane” to call her, Diane asked why. Jodie said, “you said you want to be friends, so let’s talk”. After that, she didn’t hear any more from the scammer.

One of the advantages of Facebook is that I have been able to connect with other parents who also have kids with Dravet Syndrome. It is a small group of members, I think there are a little over 2,000 members on one of the Dravet Syndrome pages. That many sound like a lot to you, but in the grand scheme of the world, it really is a minuscule amount due to the rarity of the disorder. About once a month, there is a parent who makes a post about his or her child passing away as a result of Dravet, whether it from a seizure or SUDEP which is sudden unexpected death in epilepsy patients. It is so scary knowing what obstacles face Jack, but also very comforting knowing what all he has survived. Jack goes through cycles that you all have read about through the years, those cycles are either behavioral, mental, sleeping too little or too much, or not eating or binge eating. When he gets into a bad cycle of sleeping too much & not eating which is his current status, it is very worrisome. Having Dravet, Jack’s level of pain tolerance is very high so we don’t know if something is bothering him until it gets really bad. When he’s in this particular cycle, Jack is also very sweet & kind. This cycle is definitely a double-edged sword-on one hand, we have a caring young man that is not getting into any trouble online, but he doesn’t eat & sleeps way too much. So during this phase, it is always difficult for Lee & myself because we don’t know what to expect health-wise with Jack & to top it off, he is also having frequent myoclonic seizures (the ones I call the little seizures). The myos have been our major crux for Jack’s whole life. They have been the most complex type of seizure (and he has several seizure types) to treat with Jack’s disorder.

I was recently told that Lee & myself play the victim game & take our frustrations out on others because of Jack. Now that simply is not true! If that were the case, I would of burnt down Cracker Barrel in Moore County a long time ago (a joke for those that follow mine & Mama’s videos). Not to brag, but I have had people tell me for years that they don’t know how we do it. Many often comment that they never see me not smiling. Truly that is not always the case. For me, if you act like a butthead, then that’s exactly what you’ll get back from me. I’ve learned that when people have nothing else to say bad about you, they often reach for what they think will hurt you the most & in our case it’s about Jack. I will tell you how we do it, it is by the grace of God. There have been times I have wanted to give up, but that will was not fully there thank goodness. Imagine days, weeks, months, & years of holding your child from the age of 6 months through his current age of 19 as his body seized uncontrollably & there is nothing you nor doctors can do to stop the seizures. Seizures that typically only occur starting in the evening around 7pm & lasting all through the night & into the early morning hours. Time when your own body is to be resting & recuperating from the day. I haven’t had the pleasure of a full day or nights rest in 19 years, nor has Lee. So when people impart drama on me or my family, I just want to absolutely cut the fool. It’s not important to me. What is important, is keeping my family safe, happy, & healthy. That is all that should matter to anyone, I just don’t know why other people can’t see this. I guess if you don’t have life-changing responsibilities, you don’t get what is really important in life. Every time I open Jack’s door in the morning if he’s still asleep, which he’s been sleeping to nearly 1pm everyday, I wonder what I will find. And maybe I do carry some of my frustrations around, who the hell wouldn’t with the things we have to face on a daily with Jack, but I’m surely not rude on purpose unless you are to me. Maybe it’s just my RBF lol, but I try to conduct my time on earth being as happy as I can with the circumstances given to us. Our circumstances can be depressing, now tie that in with managing a business, the struggle gets really real!

This is a picture of Jack taken this week (October 2020). In these pictures, I see sadness. I see a young man that doesn’t feel well. I see a body full of eagerness to be a normal teenager as well. Jack loves going hunting & in the picture of him with the orange coat on, he is not himself, nor is he in the bed. Jack looks unwell in both of these pictures.

As we watch Jack go through this particularly difficult stage, it is a constant worry, but all of his stages are. Death has each of our numbers, it’s inevitable. But to worry about the death of your child with a severe disorder that could call him home sooner than most, puts what’s important into perspective. I do find myself comparing our situation to many others, simply because other people’s drama & problems seem foolish when to me& Lee when we have to deal with issues like Jack does & we do as his caregivers & so many others in this world go through challenging issues & illnesses. We will keep on keeping on as best we can until our time comes, but we will do whatever it takes to keep extra negativity out of our lives & the lives of our children because we already have enough to deal with. Until then, I will admiring my favorite house in Pinehurst. I will continue to think that it is warm, inviting, & full of love & laughter inside & I look forward to building one of those big houses one day, but don’t be surprised if ours isn’t painted aqua!

Author: dravetsyndromeblog

44 year old Mama of three kids, wife of a farmer, & business owner. View all posts by dravetsyndromeblog