My last blog post about Jack’s birthday created quite a stir for someone, not only my last blog, but more than likely all of them. When you expose your life like I have done, there will always be people to criticize, disagree, & be downright hateful. This is not the first time I have received backlash for a post, I’m sure it won’t be the last. The person that commented negatively thinks he or she has told me something, all the person did was make me mad, make me have a sleepless night, & made me wish I knew who it was! There are so many cowards hiding behind a keyboard. Most of the time, these “cowards” have no clue what they are speaking about. I blog to teach people about Dravet Syndrome. I blog to let people know who love & care about our family that often ask how things are going. I blog to ask for specific prayers for challenges our family faces with Jack. I also blog to get Jack’s story out there to see if anyone can offer any type of assistance or helpful advice. I am real, factual, & honest, maybe to a fault, but that’s really no ones business but my own. These are the comments “anonymous” left for me.
Jack is not seen as a problem, the rages & violence are THE problem. I know this is nothing he can control at all, who would willingly make the choice to live life that way? Mental illness is real. It is often times something that can not be controlled with medications. Does “anonymous” not have good sense? What family feels safe with a ticking time bomb? I wonder what kind of loophole I could find as “anonymous” suggested to curtail violence? We have exhausted meds, doctoring, the help of social workers & more. All outlets have been explored many, many times. Nothing has helped. Does “anonymous” want to take Jack to the beach for a week on a vacation, to Walmart where he collapses on the floor to get attention, or when he pretend sleeps when he doesn’t get his way & wakes up pounding you in the head or when you’re sitting in the living room minding your own business & he comes in & starts whaling on you. Or how about call “anonymous” when my t-shirt got completely ripped in half when Jack was only 11 when in a violent rage? Did this person not read about the seizures Jack has & the injures that come with them & the violence that comes afterwards? But that’s all normal & deal-able, right? What loophole is there when Jack refuses to bathe for well over a month & no longer brushes his teeth? What loophole may I use when he communicates with predators online that try to con us out of money? What special loophole is there when Jack stays up til 5am & I have to work a 10 hour shift plus I have stay up with him to make sure he doesn’t burn the house down? Sounds like “anonymous” has watched one too many Bugs Bunny cartoons!
I have a simple request, if you don’t like what I post-delete, block, or keep scrolling. Your negativity is not welcomed here.
Cruel & Unusual Circumstances 
So sorry Amy! You keep right on blogging and we will surely keep praying for your family. We will even take a moment to pray for judgmental people who have no idea what you and your family go through every hour of every day. ❤️🙏
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Oh my!!! How righteous these folks are to assume you do not see blessings…..where do they come off for one minute having a clue what Dravet Syndrome is like….Please do not let these folks make you doubt the insight you and your entire family are sharing. Especially with an Adult with DS…..it IS NOTHING LIKE a child or toddler that you can handle and deal with…..This is a whole other stratosphere! You are now facing decisions that none of us, even those of us with adults with DS…there is no textbook description, or easy path…..and for heavens sake, DO NOT lose sleep over these holier than Thou folks……you lose sleep as it is……You are managing one day, hour, minute at the time…..they do not walk in your shoes…..nor pay your bills…..and I’ll bet none of them would begin to offer to come and live your life…I get it….every stinking bit of it……your Love for Jack has never been the issue…..I am here when you need me. KBobbitt
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The old saying walk a mile in my shoes” should be thought of here. We would all do anything or give up anything for our kids to be healthy and whole. Your stories are raw and you should not be shamed for telling your life stories with Jack. I pray for Healing and answers for your family. No one deserves to live their life in fear. His and hope fore better days to come.
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You don’t ever know who your stories are helping. Keep writing and one day someone might see this and have a perfect answer for you to help your son. So glad I ran into you on Facebook. Enjoy being your friend and especially love yours and pat’s videos.
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I’m so very sorry. Some people are just ignorant. I’ll just step out here and say, it sure bothers me when a person says, “God won’t put more on you than you can take”. Amy, you and your family are some of the strongest people that I have ever known of. My life is not a bed of Roses, but I sure wouldn’t attempt to walk any distance in your shoes at all. And then to not have the guts to sign their name, that’s just as two faced as a person can get.
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Amy, I have never met a more loving and accommodating family than yours. Anyone who knows you and your family, knows what lengths that you all have gone to to expose Jack to life and things of the world. Please don’t let these negative comments keep you from having an outlet to express your love, and frustration, for Jack’s disease. You are an amazing momma and anyone who truly knows your family knows that without question!
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Amy,this anonymous person obviously has no idea what Dravet syndrome is about and I wouldn’t give them the satisfaction of knowing you lost sleep over an ignorant thought! This really ticks me off and all I know is what I’ve read about Dravet’s and from your blogs. I guess it’s true that ignorance is bliss! You and your family are always in my prayers!
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