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I haven’t blogged in a while & some of you may be glad, y’all probably get tired of hearing about our woes. I mainly started the blog so that people would know our challenges. Most have never heard of Dravet & most of you never knew our innermost secrets. It’s not like we tried to keep Jack’s illness a secret, it’s really too complicated to explain while standing in the grocery store checkout line (unless I’m being checked out & the cash register blows up or there’s a price check-which is always a possibility). It’s not a ‘how’s your Mama & dem’ type of question where you reply ‘good’. So, if I ever bore you with our complications, sorry. I have been harshly judged for being so open about our experiences from some & that’s fine. I only know that the more people know about what’s going on, the more prayers, suggestions, & help that is going to come our way, not to mention the awareness it brings to Dravet.

The amazing part about this journey is the latest seizure freedom Jack has experienced. Jack experienced a huge range of medication changes over the last 6 months, from weaning the CBD oil, to a sleep aid, an additional seizure medication, & my own hocus pocus wizardry. That’s a lot for the body to digest! Jack’s last seizure was February 3…until last night. How we did enjoy the reprieve from the heart stammering stress that noise made to let you know he’s in distress. Along the course of the last 6 months, I also (under the advisement of his neurologist) did some weaning down from one of his daily meds, I am only hoping that this tinker was not the result of this seizure-only time will tell.

Everyday I make a log about Jack in a journal. Whether it’s as simple as saying no seizures, his mood, writing GTC which means generalized tonic clonic (another word for grand mal seizure or as we call it, a big seizure), or medication changes, I do it so I can try to make rhyme or reason if needed & to help me keep up with things. I have years of tallies chronicled. I’ve never been able to blame his seizures on a full moon or weather changes, but at least I feel like I am doing something to help me keep up with the chaos that is our lives.

I remember being a young mother & journaling about the day spent with the kids. I wrote about our days & how what we did. We did simple things like going on a picnic in downtown Rockingham by the water fountain & then we’d walk to the bakery for a treat, visit with elderly neighbors or relatives, or going for evening rides through the country with the windows down watching the sunset. This is what I miss the most. This is the type of stuff that is impossible to do any more. Dravet has robbed Jack in so many ways. Sunsets are my favorite, I called them cotton candy skies & would always take pictures of the majestic colors. Now, I’m lucky to see a sunset without the trees from our yard blocking my view. Jack still doesn’t want to leave the house, no amount of bribery works so we don’t even try any more.

This life is hard, much harder than I ever dreamed possible. I was never one to fantasize about what my future would look like, but Dravet was definitely not in my deck of cards-or so I thought. I started working at David’s Produce when I was 11 with several other friends. That was hard, hard work, but we had the time of our lives. To me, that’s what my future held, working hard everyday & having fun at the same time. I worked there for 11 years, under the best bosses ever. That’s where Lee & I met. I love working, love being a laborer, getting things organized, having tasks, interacting with people. And I love being a stay at home Mama too, so I am super glad we were able to provide that for each of our kids. What really burns me up is when people ask what I’m doing at The Berry Patch or they’ll say I don’t know you did anything. The absolute gall of some people. That’s basically like asking me when is the baby due & I’m not even pregnant! Being a stay at home Mama is still my job, but so is being a caregiver & a business owner. How crazy is it that I worked at a produce stand as a child basically & now help run one at the age of 42!

Right now, we focus on getting by second by second (literally). When nighttime comes, there is an audible sigh of relief that we’ve made it through another day. Everyday there will be sunsets, everyday there will be a cotton candy sky somewhere, I can only hope that the next sunset I experience is one that takes me back to a time of peace, calm, & hope for our family & one that we can all enjoy together.

Becoming a parent is a wonderful, exciting time.  Thankfully, most of us have healthy (physically & mentally) children.  Most of us Mama & Daddy’s do not even think about something being wrong with the baby, but when there is, your whole world is changed.  The feeling is indescribable.  For me, the feeling was like complete desperation & that desperation has not eased up.  That feeling gnaws at the very core of your soul, slowly eating away your spirit.  Taking care of a person with mental disabilities changes you, morphs you into a person unrecognizable, makes you mean & cold.  Now I assume I am not speaking for everyone & if you don’t fall into this category, bless you.  A friend said it best & I never thought of Jack in this way, but caring for him is much like caring for a newborn, a toddler, & an eye rolling, hormone-enraged teenager-all this for ONE person…Jesus take the Wheel!

Never being much of a morning person, I often wondered why the term ‘good morning’ was used & I’m still left wondering why!  Let me give you an example of the torture I endure every.single.morning of my life.  First off, Jack didn’t go to sleep until 2:30am & that was with double melatonin & a prescription sleep aid that was given at 10:45pm.  He even called the house at 2am to ask me to come to his room to tell me he couldn’t sleep, it may of been the music he was blasting us out of the house with that stirred him up-just a wild guess!  After settling down because I was mad, frustrated, & tired, I was able to sleep until 8:30am, a little over 5 hours of sleep, but that was not before being startled by his Amazon Alexa alarm going off-he set it to go off during his precious slumber.  Not to mention how he talks to Alexa.  He talks to her like Archie Bunker talked Edith!  I pure-tee hate that Alexa!  As previously discussed in one of my blogs, Jack talks in his sleep big time.  At 8:30 this morning, he screams ‘ouch’ in his sleep (never done that one before) & didn’t woke up until 11:00am.  He has now gotten into the routine of not wanting to take his morning meds.  I have to be extremely inventive; guess what drink is in this cup, guess where this drink came from, I’ll pay you (I’m running out of ideas & he is patience).

The next cycle is the music yet again.  Blaring music, singing songs (mostly Keith Urban), singing them as fast as he can, beating on tables, chasing me around the house literally to sing in my house, poking me in the stomach repeatedly.  This can go on for hours until that precious medication calms him down enough to secure him to his bed until around 10pm when the vicious cycle repeats.  Coleman walked in from school early this afternoon & Jack runs up to him & starts poking him in the stomach & tried to prevent Coleman from going to his room.  I had to intervene, Coleman has zero patience for him.  I was able to get Jack distracted with another Keith Urban tune.

Now the next thing is his desire to see Keith Urban in concert.  He is relentless in his efforts to get us to go.  We certainly would love nothing more than to be able to go & enjoy this with Jack, but the odds are against him.  See, Jack had to stop attending VBS, youth programs, church, birthday parties on account of seizure activity.  The excitement of going to these small, local events was too much.  Seizures always ensued.  He’s now bigger, harder to manage in a vehicle during a seizure event, & it is extremely difficult to get him to the car because he is so tall.  I am only thinking of trying to get him out of the arena in a decent fashion that is not going to kill Lee or myself.  There will be lots of walking & Jack simply can’t hang, but you can’t tell that hard head nothing.  So, all we can do is go & pray.  The concert is in the heat of the summer here in North Carolina in July.  Heat is also another seizure trigger for Jack, as is the time of the concert-evenings are trouble for him.

Around 2pm, Jack finally retreated to his bedroom for the afternoon where he is conducting his business of trying to call movie studios in Hollywood, CA to reach a Power Ranger actresses, calling Apple about some sort of iPad issue, & sadly, commissioning Alexa a.k.a. Edith to play every song known to man.  This child even setup his own Google phone number so he could call long distance since we don’t have that capability on our landline.  As I start my evening routine of making cobblers, dipping those fabulous chocolate covered strawberries, making fruit dip, interacting with Coleman or Ava, he starts.  When I show attention to something other than him, he becomes obnoxious & the cycle starts all over again.  He now wants me in his room starting at 11:30pm until the wee hours of the morning.  I am barricaded in his room for hours trying to keep him from roaming the house & disturbing the others too much.

There are mornings & evenings that I pretend to have an upset stomach so I can go to the bathroom & lock myself in to escape the loudness.  So for all you new Mama’s, enjoy your precious, healthy children-you have been given a gift.  Our gift was just shaped a little differently & behaves a little different, but a gift nonetheless.  We are still learning how to conform to this life, to the life of a medication resistant disorder.  There are so many pills to help so many illnesses, but not one magic pill to help these extremely difficult behaviors.  If you find yourself passing our home, passing The Berry Patch, or see us out & about, say a prayer for a sea of calmness to enter our home & please be praying with us for Jack to be seizure free before, during, & after the Keith Urban concert, & that Jack will turn that music down.  Thank you all for your support & concerns.

Until next time,

Amy

As most of you know, we have three kids-just had one to turn 18 last week, unbelievable!  This blog is a little different this time.  It ties back to Dravet, but about my personal health journey.  Several years after giving birth to Ava, my hair starting falling out…again.  By again, I mean after giving birth to each of the children, I lost a fair amount of hair from hormonal changes for several months after their birth-day.  So when my hair started randomly falling out for an extended period of time when Ava was around 3, I became concerned.  Thankfully I was blessed with a very thick mane, but my pony tail was shrinking & I did not like it.  I checked in with my Nurse Practitioner who checked me for anemia, thyroid, & vitamin deficiencies, all was good.  I was told this was normal after having kids, but I found it hard to believe that 3 years later after my last birth, this would still be going on.  Not only was I losing my hair, I was extremely tired.  Now being tired I did brush off as being the mama of a three kids & one with extreme special needs who never got to rest well due to seizures, which meant neither did I.

Not to brag (but I am lol), I never was one to have a weight issue, I have always loved to eat-but I loved good for you food, even as a baby.  I’ve heard my Mama, Daddy, & sister tell stories of how I would crawl into the kitchen cabinets to eat raw potatoes & onions!  When Daddy would take me to The Pantry (a famous gas station/hangout in Ellerbe) after school, my snack of choice was always hoop cheese-not a candy bar or chips.  Now, I had to wash it down with a Pepsi-what good Southern girl wouldn’t?  I’ve never had a sweet tooth, rarely do I eat ice cream from The Berry Patch, I never eat birthday cake (not even on my birthday), drink mainly water, don’t eat breakfast, I eat two meals a day, & if I snack it’s on fresh fruits or veggies.  I totally dislike fast food, processed food, even bread.  I was the teenager that when I went out with my friends, I was the one getting the turnips greens, salad, & squash!  When I am forced to eat fast food, I feel so guilty & definitely not satisfied.

When pregnant with all three of the kids, my weight gain during pregnancy was under 20 pounds each time.  Coleman, Jack, & Ava were all fairly large babies with Coleman being “Boss Hogg” at nearly 10 pounds.  I was back into my regular clothes soon after birth with all three.  When Ava was around 6, I started gaining weight despite healthy eating habits & walking 4-5 times a week.  During my yearly doctor visits, notice I said visits because this occurred more than once, I would voice my concerns to my doctor/practitioner.  The chief complaints were once again hair loss, tiredness, & then weight gain was added to the list.  I would tell the health experts, I really don’t eat bad.  I know they thought, yet right, she’s a hog!

Now I knew something was wrong with my thyroid even though I had been tested many times & the tests always came back normal.  There is such a high prevalence of thyroid disorders on Daddy’s side of the family.  He has 8 siblings of which four have thyroid problems along with his Mama having issues too.  Finally, after years of knowing in my gut something was wrong with my thyroid, my NP ran a different test to test my thyroid antibodies.  This test revealed I have Hashimoto’s thyroiditis, also known as autoimmune thyroiditis.  Basically, my immune system created antibodies that damaged my thyroid gland.  I was sent for an ultrasound of my thyroid that showed I have a goiter (this always makes me think of the Seinfeld episode when Elaine sat with an elderly woman who had a HUGE goiter) & nodules on my thyroid.  I wasn’t scared when I got this diagnosis because I was/am fairly well informed about it since I had suspicions all along I had thyroid issues.  Being a self-proclaimed holistic physician, I decided not to go on medication to treat at the time, nor am I currently on medication.  Instead, I went the holistic route.  Diving into reading about the gland that controls so many functions in your body, I started a regimen of supplements & vitamins various experts recommended.  Since then, my hair loss has drastically stopped & the overwhelming fatigue has improved.  Sadly, none of the natural treatments have helped reduce my weight.  Your thyroid helps regulate body temperature & I am always cold-unless I’m working at The Berry or playing softball, it controls your metabolism, can cause heart disease, & much more.

I learned that this condition runs in families so I had a predisposition to develop it.  I learned that chronic stress can cause this disorder.  It’s amazing how destructive Dravet is & other chronic illnesses.  It not only affects the person diagnosed, but all involved in the care.  I can’t tell you how many times I have been startled out of a deep sleep to hear Jack in a seizure in the middle of the night or most often early in the morning.  At one time during Jack’s worse period, he had up to 40 grand mal seizures in a month & these were mostly during sleep hours.  Cortisol & adrenaline levels rise during stressful times & we have had more than our fair share, turns out continued exposure to heightened hormone levels is not good for the body.  It is known that chronic stress can cause disease, just wish it could cause me to lose weight!

In writing this blog, I hope to bring awareness to stress & what it can do to the body.  No matter how strong or young a person is, caregiving is stressful & really does take a toll on the body.  Hashimoto’s can take years to develop-I’d say it started about 16 years ago for me.  Do I think I would have developed this condition if Jack did not have Dravet, I’m not sure since I do have a strong family history, but I do think it would of developed at a later age.  Since The Berry Patch has gotten busier, my ability to exercise has gone down the tubes.  Lee often doesn’t get home until dark (I have to wait on him to walk so he can stay with Jack).  I prefer to exercise with friends like walking & by then, it’s too late for others to walk & I hate exercising in the house.  I never have enough room, the youngin’s come in & laugh at you, & frankly, it’s boring.

As I type this, I’m listening to Jack blast music in his room at 12:37am & I am patiently waiting for his sleep medicine to kick in (another stressor).  I am working on medication weans this week.  He has been on Topamax for 12 years & I am working to try to reduce the medication and/or completely wean him off of it.  It can cause negative behaviors, but was recommended for seizures & when your child is having 100’s of seizures a day, you will do or give anything to make them stop-in Jack’s case, Topamax did reduce the seizures somewhat.  The wean must be extremely slow since he is very sensitive to change & we need to know what is & isn’t working for him.

If you too are have Hashimoto’s (the name sounds worse than it is) & have a personal story, tips, or suggestions, please pass them along.  And if anyone has this & would like to know my supply list of supplements, message me.  If you know of anyone that is a caregiver, volunteer to help out-you might be saving their life because you never know how stress is going to affect someone.

We’ve all used the famous term, ‘the struggle is real’ for little things like the handle breaking on your grocery bag, waking up at the crack of dawn for a meeting, indulging in a sweet treat when your pants say otherwise, but when I use it the term, it comes from a place much deeper than the above examples.  Do you ever get plum fed up with struggles?  I know we do, it’s like, what could possibly happen next.  As if the struggles at home weren’t enough, we are constantly having to fill out paperwork for Jack’s disability (we actually have to prove his disability on numerous occasions), paperwork for for the business, fielding calls from people Jack has given our home number out to, whether telemarkerters or people he befriends in chat rooms, tax questions/audits, & the normal day to day family stuff.  Our house is nothing but boxes, papers, & receipts.  It all gets to be too much at times, I am not only a wife, Mama, secretary, pretend doctor, but a professional boo-hooer.  I have cried way too much over the last year, I’m hoping that can soon change.  There are things going on with Jack right now that I don’t care to write about; however, I will say it’s not good & that has really taken a toll on Lee & myself.  When I have mentioned in blogs before that it is something new each day, I literally mean that.  I know there are lives that have been more severely affected by trauma worse than ours, so please forgive me for getting down, but a break from our reality would be super!  Just yesterday, a girl from who knows where called our house & was telling Jack he needed to get to the hospital.  She told him that the doctor called & said he has diabetes & must get there immediately.  After Jack hung up on her, she called back to tell me the same thing.  I told her I was Jack’s Mother & for her not to call back.  I mean how foolish does this gal think we are!  There are so many cruel people on the internet, if only Jack were interested in his own family & the community that surrounds him, life would be a little simpler for us.

Two weeks ago, Jack had an amazing week.  In fact, he ventured out to Walmart twice in two days, wanted to dine inside a restaurant instead of takeout, visited with his Aunt Vicki & Uncle Chuck, even made it past the kitchen to interact with us.  He was so kind & sweet during this time, never once getting on chat rooms, limited device usage, even going to bed before midnight.  Then the switch flipped & normal or abnormal behavior (not sure which one it is) ensued.  It’s moments like those that make you question whether or not residential care is best.  It’s one of the sneaky ways that makes us as parents question placement.  Another sneaky example is, how will someone else be able to care for this child that I have cared for for over 16 years nearly 24 hours a day?  Just having Dravet Syndrome makes you so very fragile.  There are evil ways Dravet rears its ugly head, not just through seizures.  Behaviors, illnesses that come on so suddenly & put the child in life-threatening situations in the blink of an eye, gait issues, cognitive problems, & more.  Jack started out with two 1/2 inch long stretch marks on his mid-back 3 years ago, today those stretch marks are nearly 10 inches long expanding across the width of his back working their way to wrap around his torso.  This is the result of scoliosis, which is also a characteristic of Dravet.

It is highly exhausting to go through life planning so throughly.  When I take my shower must be planned, I never go to bed with my makeup on because we never know what the midnight hours will bring, are the clothes washed up, dishes cleaned, all the normal household stuff that we all do, but in our case, it’s done in preparation of a hospital stay.  Being the parents of a special needs child, has made us physically & mentally exhausted most of the time.  From time to time, there are articles that float around on social media about how to help parents of special needs children.  I would just like to say, that all of that is true!  I would like to add this, no matter how put together a family seems when faced with difficult situations, there is always a need.  There have been a few close friends to offer to get our other children when they were younger & that was greatly appreciated.  Helping these families with their other children IS the biggest help of all.  I have been fortunate enough to have family to rely on for this mostly.  There have been times I have taken all three children to Jack’s appointments because I hated to burden others by asking for help.  People do not like to ask for help, which is why it is up to you to step up to the plate & offer for them.

I talk a lot about Jack’s cognitive delays, but I would be remiss not to speak of the knowledge that boy contains about subjects most children his age have never nor will never know.  Jack is somewhat of a savant.  This child knows facts about The Bismark!  I don’t recall learning about the German battleship, but we have all been schooled on the sunken ship.  He is an old soul much like me.  I’ve always been drawn to the 50’s era & Little House on the Prairie lifestyle (I know big difference, but both so innocent in my mind) & I LIVE for Golden Girls-thank goodness for the Hallmark channel!  Jack knows things about animals, Jerry Reed who starred in Smokey & the Bandit (1980’s), Elvis (even has these two in his music playlist), countries around the world, the Titantic, & more.  He has the memory of an elephant, never forgetting anything anyone tells him.  What a boy!

Do we have what it takes to fully commit to placement?  How would Jack react to us afterwards?  I received a call earlier in the week from someone working on his case about a home in Greenville, NC.  That is too far for us.  His condition is so rare & subject to change so quickly, that I feel we need to be closer if we are going to do this.  If we don’t place him, what kind of damage are we doing to our other children-I worry about the psychological ramifications, especially with Ava.  Coleman is going off to school soon & will have so many wonderful (I hope) experiences, plus he has gotten through the chunk of his development.  Ava on the other hand is only 12.  She experiences things most children have no clue about, thankfully.  Will these experiences teach her anything positive?  Will this affect her relationships in the coming years, will she or Coleman be resentful of us for allowing Dravet to rule their childhood?  Will they not want to be parents when they get older due to Jack’s condition?  So many questions that we can’t answer, so many decisions to be made.  Why can’t the struggle be real as in Starbucks gave me a Frappuccino with only three pumps of raspberry instead of five?

Lee does not know he named this blog, but he did as we passed in the hall one day.  This title is so representative of how our lives are currently.  I am home all day with Jack, most days not seeing anyone until Coleman & Ava get home from school, Lee comes home in the evening around supper time, & lots of times, I pass him in the hall leaving as he is coming in.  Me leaving is either to take Ava to dance (Thursdays-yuck), run to the store for groceries, errands, or simply to get out of the house since I am secluded inside all day, many days of the week.  As I was walking out one day, Lee said, “I feel like all we do is pass each other in the hall.”  Now this statement was made a few weeks ago, but it has been weighing on my mind ever since.  It’s only every few weeks that Lee & I actually get to see each other one on one.  We try to go out on a date depending on Jack’s mood, twice a month.  Although we LOVE Southern Pines, it is a bit played out.  We try to go within 30 minutes of the house in case we need to get home quickly.  These Saturday night dates are not the most enjoyable nights either.  We feel like we are taking a chance.  Taking a chance with the safety of Jack’s helper, Linda.  If the phone rings, we panic, if she doesn’t answer the text I sent to check on her & Jack quickly, we panic.  Our lives feel like a constant game of Russian Roulette.  If we could make money from worrying, we would be billionaires!

The ramifications of the turmoil of Jack’s behavior is not lost on us.  We worry about what this is doing to Coleman & Ava.  When Ava gets home from school, she goes upstairs & locks the door because she is scared.  Ava is an early riser like her Daddy, on mornings when there is no school, she stays in her room being as silent as a mouse because that is how she has been trained.  We live in a 1923 built home that has creaky floors & thin walls.  Ava knows that Jack will hear any little sound & will wake up before he is due to if there is noise in the house.  So whoever is home, whether Coleman, Ava, or myself, we are held hostage in our rooms until Jack is awake.  Even then, they don’t like to come out because Jack is so wild (bull in a china shop wild).  Often, it is 11am before I see them.  What a tragedy.  Though it’s just a few hours, time adds up.  The thought of the kids upstairs alone in their rooms so frequently breaks my heart.  I never thought I would have to text my children to communicate with them while they are inside the same house as I.  Not only do Coleman & Ava have to live in fear, go to bed with music blaring through the house & listening to Jack & his “friends” talk in those chatrooms until wee hours of the morning, have no vacations with their parents, but they are dealing with severe isolation from the very family that lives with them.  We are a small family in general.  Coleman & Ava don’t have cousins their age, most relatives are elderly.  So they truly depend on me for their entertainment.  Most kids don’t want to have sleepovers here due to our situation & I can’t blame them.  I just want to have normalcy for them & for Lee & myself.  Over 16 years of day in & day out worrying is draining to say the least.

The other heartbreak is the lifestyle that Jack is leading.  Jack is perhaps one of the most complex medical individuals I think the world will ever see.  What I have written & write about, does not do what we deal with daily proper justice.  One minute he is singing Hot Potato by The Wiggles (that is music for toddlers), the next singing Rockstar by Post Malone which is a song littered with horrible language, then onto Keith Urban.  He gets mad over simple things like trying to put his McDonald’s food in a plate versus the containers they came in.  He pretends he is asleep very often which is never a good sign, this is often a symptom of impending violence because he isn’t getting enough attention, but in the same breath he does not want our attention (confused yet?).  He plays his music as loud as it goes, but the closing of a cabinet hurts his hears.  You never know what to do, how to react, what to say, it is a game of constant guessing.  He refuses to eat anything cooked at home & I love to cook.  His meals have to come from a fast food place or freezer food.  Jack calls Lee roughly 5 mornings out of the week requesting gravy biscuits from Dixie Burger.  When I do get to go town, he is calling asking for a Big Mac or something of the like.  Being the parents of this child is expensive!  If we go out, we have to pay someone to watch him, when I work, we have to pay someone to watch him.  Money is dished out all the time for a child that does nothing but sit in his bed all night & day.  I feel like I am servant to a very ill & unkind King.  After he gets settled on his devices, I only go in a few times a day to check for drink refills or food needs.  I must close the door after leaving.  If Jack needs something, he screams my name or snaps his fingers.  The only time he calls is, if he needs something like food, drink or the internet is out.

Decisions are going to soon have to be made.  Do we add onto the house we live in now & have separate living quarters for Jack, do we remodel a house that we recently purchased (but that is going to take a long time), or do we find a residential home to place him?  These are all extremely hard decisions to think about, but imperative that we do so soon!  Please think about us through these next few weeks as we dwell on what is best for our family.  Pray for guidance, the weight of worry to be lifted from each of our shoulders, & of course safety.  Pray that our passing in the hall will turn into smiles rather than tearful eyes.  I never want my blogs to come off as a list of complaints, I write the blogs because so many people ask about Jack & his condition CAN NOT be summed up in a 60 second paragraph.  Thank you all for your prayers & feedback on my blogs-keep them coming!

Ever heard the song Shiftwork by Kenny Chesney & George Strait?  Well, that’s our life, 7-3, 3-7, 11-7 all these hours combined in one day! There were nights this past week that Jack didn’t go to bed until 2am & 5am & then up at 9am, that meant I was up until then.  Not only was I up, Jack was being very disturbing playing music as loud as it would go, rummaging through the frig, talking/singing loud, ugh…what a night(s), so no one really gets a good night sleep around here.  After the torturous night of staying up until 5am only to awake at 9am with Jack bounding through the house like a person that just downed 5 Red Bulls, a cup of espresso, & a line of coke, I made the expert decision to increase his melatonin dose for the next few days to try to get him back into his normal bedtime, usually before 1am.  I often feel like a doctor working 72+ hours in a shift, getting 6 hours of sleep in a night is a win for me!

This past week has been especially hard.  Jack is involved in chatrooms, these chatrooms include live streaming, are in groups, he can see them & vice versa.  I never would of believed in a 1 million years that he has partaken in the activities he does.  The language these people use & the topics discussed are revolting for any age.  And I know what people think, you take that away from him, it’s that easy, but it’s not.  Because Dravet plays by its own set of rules, we have had to make adjustments to our lives each & everyday.  He never could play sports or be involved in extracurricular activities due to the excitement of these things causing seizures.  Our adjustment to helping create the best life for Jack was games & television.  When most kids were out practicing their baseball swing, riding bikes or climbing in a tree, Jack had only a few options-watching TV, playing on his computer or Nintendo, or messing around inside the house.  The games & computer became an obsession, his distraction.  We thought for the rest of Jack’s life, we would be privy to the mind of a 6 year old with watching Max & Ruby, Power Rangers, listening to Jack win a computer game on PBS Kids, boy how we were WRONG!

This part is for all parents, whether you have a normal child or a special needs child, please read & take my advice.  Jack has never heard us use cuss words, not sure that he has heard any on TV either until this summer when he got involved in the chatrooms.  These people get in arguments mainly with one another about race, nationality, sex, all topics Jack has zero knowledge of & most of the rooms are riddled with ugly words.  Just recently, one individual was telling Jack to say ugly words too, which he did-that was really painful to hear & just another something to worry about.  And to top that off, we’ve got to worry about Coleman & Ava hearing such. Now, Jack is on the hunt for a girlfriend, bless his heart.  He is wanting to have more social interactions, but does not know how to go about finding the appropriate people to talk with or have the knowledge to do so.  Jack can’t be the only person in Richmond County that is mentally challenged that needs more socialization.  I urge you all, if you know of someone that has a teenager/young adult who you think would enjoy some type of social gathering, please put them in contact with me.  I am interested in getting these kids together so that they can feel included too.  Whether it’s meeting at The Berry Patch for ice cream or a local church for games, the need is there I know!

But getting back to the advice thing.  As we thought Jack would always be in the mindset of a young child, we were obviously wrong.  We did not take the proper precautions to protect his computer/iPad from the evil of the internet.  I had no idea the uglies that were on Facebook.  I have a friend that always says Facebook is the Devil’s playground.  I never really saw that, until I looked at Jack’s Facebook page & saw the sexual content on different pages.  I spent many a night staying up until 2am reporting these pages, it was making me crazy.  I would report 100 a night, only to find out he had befriended 100 more the next day.  This is another example of “shiftwork”.  No matter how innocent you  your child is or how young, please look into Net Nanny or other protection programs, look into getting a special router to block X-rated sites, you can even block certain words.

Each day, nearly every hour, sometimes every minute, we are faced with something new to deal with & it’s typically not a good thing.  I wonder many times a day how in the world some people are destined for life on the beach margarita in hand, while others are faced with challenges every.single,day.  However, for the first time since Christmas Day, Jack rode in my car this past Friday.  It blows my mind to think it took over two months to get him back into my car.  Since then, Jack has been coming out of his room more, even ate supper in the recliner in the living room today.  He goes weeks without walking past the kitchen, so that was a real pleasure.  In closing, I ask that you pray that Jack will continue to come out of his room more, be more flexible with things asked of him, less time spent on the computer, to find good friendships, & most importantly, that he will never be violent again.  Thank you big!

Most of you love Thursdays.  Thursday is the gateway to the weekend, the day before Friday, almost the weekend-what’s not to be happy about, right?  I have a love/hate relationship with Thursday.  Thursdays are my Mondays.  Not just this Thursday but every Thursday since the night of Jack’s last attack on us THURSDAY, December 7, 2017, not that long ago.  Thursdays has always been Ava’s dance night, which meant I typically would get to escape the house for a few hours to read a book while she was dancing or eating out with friends.  On the night of Jack’s last attack, Ava was at dance & I was running around town doing errands & enjoyed eating out with Mama.  When I got the call from Coleman to hurry home, I had just pulled up at dance to pick Ava up & chaos ensued.  The taste of fear immediately entered my mouth (it’s a sharp, metallic taste in case you were wondering).

It’s like the time you ate something & puked it up, you never want to eat it again because it left a bad memory.  Or the time my Daddy was very ill with extremely low hemoglobin & the doctors couldn’t figure out why he was so sick.  During that time I was wearing the Elizabeth Arden fragrance, Green Tea, I can never go back to that scent again because it takes me back to that dark time.  Thursdays are a day I never want to relive again, unless they are like the one last Thursday or the previous Thursdays when Jack was not raging.

Thursdays I suppose will always be a day I walk on eggshells.  My mind latches onto bad memories so hard, that I have a hard time forgetting.  Every single Thursday feels like terror is going to follow.  When midnight arrives, I can take a deep sigh & be thankful we made it another Thursday.  Now, I know that the reality is Jack can rage at any moment making me dislike another day, but for right now, Thursday has left a fear in a my soul so deep that I don’t know if I’ll ever get over it.

And Thursdays is not the only time I live in fear.  If I leave the house, I am constantly worrying, calling, and/or texting to check if everything is okay.  One of the best traits I received from my parents, was the gift of not being a worrier & having a sense of humor.  Imagine going from never worrying about much at all, to worrying nearly every moment you leave the house & while you are in it-it’s no fun at all!  The most heartbreaking part of me leaving the house when my Mama, Daddy, my Aunt Ruby, or Mrs. Teal is in charge, is handing over the mace I carry around all the time in case Jack acts out again.  Y’all may think carrying mace is extreme, but it gives me a sense of security that I am unable to obtain when I’m home alone with just Jack or just Jack & the kids.  Having Lee home with me, is my security blanket.  I need his strength to make it through.  I’m truly thankful he hasn’t run for the hills, a lot of marriages can’t withstand the cruel & unusual circumstances that has unfolded in our lives.

Through continued prayers & medication changes, my hope is that Thursdays will feel like your Thursdays do-excited & hopeful for the weekend.

Facebook is/can be a great tool for so many.  Through Facebook, we have been able to connect almost daily with loved ones, high school friends, boost business sales, & more.  I have been able to connect with fellow Dravet parents.  This has been a wonderful connection for myself to learn more about the rare disorder that plagues Jack & our family.  There are varying degrees of Dravet.  Jack is considered to be high functioning compared to many of the Dravet patients whose parents I’ve developed relationships with.  A great deal of the DS patients can not speak, walk, have G-tubes, and/or completely bedridden.  The behavior issues that we have with Jack are a common trait that DS kids share.  It seems the more high functioning they are, the worse the behavior can be.  It’s a catch 22 this Dravet is I tell ya.  The higher functioning cases have behaviors that are so challenging, that many have to be placed in a facility for care.  The lower functioning cases often can’t even say “Mama” & have to be placed in a facility for medical care.

It’s at least every 4-6 weeks that I grievingly read about a Dravet child passing away.  So you see, Jack has a very serious illness & I don’t think people realize just how grave his condition is.  At any moment, any of us could meet our Maker, but it is such a tragedy to live with the possibility of your child passing away because of a seizure.  And this is how Dravet takes our babies.  They end up having a seizure that their sweet little bodies can’t recover from.

As high functioning as Jack is, did you know that he can not feel pain?  This is also one of the characteristics of Dravet.  We once were getting ready to watch the 4th of July fireworks at the park, I looked down to see Jack’s feet & legs were covered in fire ants-he never knew it until later on in the night when he started itching like crazy.  As a tot, he would get his blood drawn & would never flinch or cry, would touch a hot pot & not realize it was hot, or get cuts & never know it until he bleeds & would never cry about it.  Our lives are impacted by Dravet every.single.second.  While there are a multitude of mountains Jack must climb, what we are continuously amazed by is Jack’s resilience.  Throughout all of mountains Jack has climbed, he bounces Jack swiftly & typically with a smile on his face.  From seizure after seizure, did I say seizure, to pneumonia, drug trials, violent behaviors, surgeries, testing, hospital stays, procedures, annoying habits & acts, to name a few, the common theme here is resiliency.

I never thought I would thank the girl that rides a wrecking ball nearly naked & sticks her tongue out more than an ant eater for anything, but she just so happened to sing a pretty great song & it’s one of Jack’s favorites, “The Climb” by Miley Cyrus.  This song is so fitting for his life & ours.  Life is a climb, there’s always gonna be another mountain, your faith is going to shake, there’s always going to be struggles, but you got to keep on pushing.  And that’s what we do.  We’ve climbed, shook, struggled, & pushed for 16 years.  We pray that we can continue pushing for 16+ more years.  We tearfully think about life beyond mine & Lee’s years.  Who will continue care for Jack?  There is absolutely so much to think about, plan, & organize when you have a child or family member with health conditions.  We can’t die like normal people, we have to plan everything out!  I am aware this blog has taken a sad turn, so I will end it by saying this:    if you are reading this blog, my message to you is to live!  Do something that you have always wanted to do, take a chance, & have fun doing it, for we never know what life will throw at us.  Don’t live in fear, enjoy your life, go to fun places, hang with fun people, do what you truly love, but most importantly, do it with a kind heart.

The pre-Dwarf life of Snow White must of been wonderful, you know the part where she was asleep, of course I say this tongue & cheek.  In fact, my life bears striking similarities to Snow White & the Seven Dwarfs.  Let me explain.  I am Doc-received my MD right from my home through lots of personal experience, Sleepy (chronically), Grumpy (most of the time because of Sleepy), Happy (it’s in my genes thanks to my Mama & Daddy), Sneezy (do it all the time), Bashful (at times), definitely not Dopey…but maybe I should be considering how life is currently going.  (Insert laughing face emoji, lol).  Kids with Dravet Syndrome have severe sleep issues.   So severe in fact, that Lee & myself have not slept well in 16 years.  There have been varying stages of sleep issues that Jack has been challenged with during his 16 years.  I was a nursing mama, Jack only ate from his nursing mama, refusing a bottle with mama’s milk, all feedings were left up to me, which was fine until 6 months of age when Jack’s seizures started.  Taking care of the boys so close in age was not that big of a deal, I guess it was because there were bigger fires to control.  Coleman was such a big help to me even at the age of 2.  If I was feeding Jack or tied up doing something, Coleman would fetch whatever I needed.  Whether it was the phone, a burp cloth, blanket, whatever.  He was & is a true blessing!

The seizures that struck Jack at 6 months old, interfered with our sleep tremendously.  When Jack slept (which babies do a lot of), whether it was a nap or nighttime sleep, he would wake up in clusters of seizures.  These clusters would last anywhere from 20 minutes to two hours, having literally 100’s of them in each cluster cycle multiple times a day & night.  Once the seizures calmed, he was exhausted & back to sleep only to repeat the process over & over & over again.  By this point, I was exhausted from being the mama of two babies.  I was the one to get up with the boys most of the time because Lee worked everyday in order to support us & the growing amount of medical bills we started to incur.  His days were typically 5am-7pm.  Someone had to be somewhat well rested!

Fast forward to the toddler years, I found out I was pregnant with Ava.  It was during this time that the ketogenic diet (the seizure treatment Jack was on with 100% success for 2 1/2 years without any seizures), that the diet stopped working & the seizures reached one of their worse peaks.  I was blessed with perfect pregnancies.  Only gained like 16 pounds with them all & they were all big with Coleman weighing nearly 10 pounds, never had morning sickness, I was just dog tired during my nine month terms.  So there’s that, no sleep & seizures all the time day & night & chasing after two boys while waiting on our princess.  That was my life.  Ava was just like Jack in that she only would take mama’s milk directly from mama’s milking station-there again no sleep!  She really was a great baby.  Ava did not wake up all the time eating like Coleman & Jack did, slept great, was happy, she adapted well to the chaos that was our life & still does adapt well.

Now why I say sleep is the enemy is because it is true.  I could not even begin to count how many times we have been woken up in an emergency type situation, rushing Jack to the ER or with him seizing in the middle of the night.  The amount of times I’ve changed bed linens during the night due to Jack losing bladder control during a seizure far outnumber the times most people even change their sheets in a year.  And if these things aren’t bad enough, it is always something if I am trying to sleep.  Let me give you some examples.  If I am trying to nap, the phone always rings.  I finally started taking the phone off the hook.  If I am trying to nap, the doorbell is going to ring & it is almost always some sort of solicitor or nutcase.  I absolutely dread Saturday’s because this is when they start prowling.  It’s like we have a sign visible to only those that are lunatics that says “Welcome, now accepting applications”!  Most recent was two known town junkies stopped by to see my husband.  Knowing Lee has never had any involvement with these men so I called him-Lee went & found them, they wanted to earn $20.  $20 is the magic number here at our house.  Had a neighbor man walk to the house twice in two weeks wanting to borrow $20.  Now, I was generous the first time, but not so much the second.  Once, I had an older man spin into the yard on two wheels dressed like pimp donning gold chains & even carrying a Tupperware glass of tea!  I closed the door in his face & did what any Southern gal would, called all the neighbors, took a picture of his car & posted it on Facebook to ask if anyone knew him.  He sped off like a bat out of hell, but I properly investigated him.  I still have no clue what this man wanted, but I at least know his name, license plate number, & who his mama is!  All of these moments all occur while I am laying down!  Now wouldn’t you think to yourself, why is it Lord that I am not supposed to be napping?  Every single time I lay down & am awakened, I say, “I don’t know why I even try!”

Current day status with Jack’s sleeping habits are some better for him.  His room is equipped with a baby monitor so I can hear every peep made & believe you me, I do!  From the creaking of his bed every time he turns over, to the severe talking and/or singing in his sleep, I hear.  Jack does not just use a few words, he talks in chapters all night long.  It is highly disruptive to us all because it is like he is having a loud conversation with someone & sings the whole song of whatever tune is spinning on his turntable.  Then when he wakes up, it is on!  He is back to his bull-in-a-china-shop phase, running through the house horse playing.  Think of the most annoying boy in your 5th grade class or think of Richard Simmons on steroids bouncing through the house, poking me in my stomach, being just plain silly-it can be slightly aggravating, but it is better than some alternatives that we have gone through, so I will gladly take it!

I am not kidding about the sleep interruptions.  Seriously people, people will not stop worrying us.  Folks still ring the doorbell even when the doors are all closed & the curtains are pulled.  That is a sure enough sign I would think that these people are still asleep!  Now this does not include family or friends so do not get offended if you are reading this!  I enjoy the company of people I know & like-really I do!  This blog is only meant to explain the bags under my eyes, my frequent yawnings, & to describe how something that is meant to be so peaceful & relaxing has turned into a curse-enjoy!

Have you ever really wondered why the momentous occasion of turning 16 is called “Sweet 16”?  I mean most 16 year olds are eye rolling, whatever Mother, hormonal crazed animals, right?  Like 1 in 10,000 might be sweet, this should be in the books as a rare disease!  This is particularly true in Jack’s case & of course everything he has is a  rare phenomenon, just wait & read.

February 2017 (Jack age 15), we began talks with Jack’s neurologist at UNC to become involved in a drug study for CBD oil.  CBD oil is a medication that will be available in prescription form at some point for Dravet Syndrome patients, the name of the medication is Epidiolex.  Epidiolex has shown promising results in individuals with Dravet Syndrome.  For years, I have read about the wonderful results many parents shared of their kids on CBD oil, so this was definitely on my radar of things to try for Jack when we were able.  The first part of the trial was no medication, only daily phone calls to the company to report whether or not Jack had seizures.  This was a 6 week process, Jack had to have 4 grand mal seizures during this timeframe to qualify-which he did not the first go round but did the second go round, easily.  The first stage ended up being a 12 week process just to get to medication due to him not qualifying the first 6 weeks.  The drug study that Jack was involved in meant countless trips to UNC for lab work, urinalysis, EKG’s, & mountains of paperwork for me.  The second part of the study was getting the medication, this was in May.  The medication was given in oil form (stated for those that thought maybe Jack was sitting around smoking a dobbie)!  It was not known nor will it ever be known whether Jack received the placebo or the actual medication, I think it was the actual drug because that is when things started a downward spiral.

As I have expressed before, Jack has had & has violent tendencies.  We did not have to deal with any rages from Jack for almost two years.  We thought okay, he has gone through puberty & we are not going to have to deal with that any more.  Also, we changed we way we parented Jack.  We learned we couldn’t holler at him like a good ol’ southerner does her child.  I couldn’t say, “turn that music down before I knock your teeth out!”  Instead, it was “Jack, how can I help you?  Do you need anything?  Do you mind turning down that music?”  All parenting methods were changed when it came to parenting him.  Gentleness was bestowed & practiced often which should be always but that is not reality.  The first rage in two years came back in May of 2017, during the time he started the CBD oil.  Jack did not want to go with me to pick Ava up from school.  After trying to reason with him, he hauled off & attacked me.  Thankfully, Mama & Coleman were home with me.  Coleman had a dentist appointment that day & was home from school.  How very thankful I am that he was home.  Having good dental hygiene paid off in more ways than just a pearly white smile, Coleman helped save his Mama.  That day, Jack’s strength was different.  He was much bigger than he had been when he last attacked me & stronger.  Mama was busying calling Lee & 911 for help to try to subdue Jack.  Trying to hold him down is one of the most trying things I have ever experienced.  He is like a wild, rabid animal.  The police had to handcuff him.  After Jack was calm enough, he went back to his room & slept much of the evening.  As adjustments were made with the study drug, behavior started to slowly get worse, OCD increased, & lack of appetite was in full force.  Jack used to live to swim in the summer in our pool.  He started refusing to go out for swims.  As Jack edged closed to the age of 16, he started refusing to go anywhere at all.  Doing three months of either the placebo or actual medication was required before you made it to the final stage which was getting the real medication.  When Jack turned 16 on August 2, we had a small celebration at Chucke Cheese, then people dropped in during stages to bring gifts.  Remember, excitement causes him to have seizures, the point was low key.  He had seizures at everyone’s birthday celebration that year.  The third week of August, Jack had yet another violent attack on me at 11:30 at night.  This particular night, it was Ava that heard my screams & woke Lee & Coleman. Can you imagine being an 11 year old hearing the screams of your Mother? This thought breaks my heart continuously. All we can do is move forward & try to push it to the back of our minds. Police was dispatched, this was the worst one yet.  I was ready to commit Jack at that point, but his team at UNC begged me to wait & try the actual drug before making that decision.  August 28, 2017, Jack started open label Epidiolex (100% real stuff, no more possible placebo).  Increases were made though we never saw any changes in Jack.  He was losing more weight, not drinking, seizures were still the same, behavior still at the forefront.  Jack was on this medication for nearly 3 months before we decided that the medication was not helping his situation at all & we withdrew him from the study & the CBD oil.

I can’t help but think the Epidiolex started this downward spiral in motion or was it turning 16 that caused it?  I will never know for sure, maybe a combo of both.  Jack is definitely teetering on the edge of wanting to be a normal teenage boy by getting involved in chat rooms or looking at inappropriate images on the computer, which has been one of the hardest pills to swallow.  The latter isn’t so much of an issue as it was while on Epidiolex.  One of the side effects of the medication was better cognition, which I think sparked that interest.  He is still on chat rooms, we don’t like it but we do what we have to in order to keep the peace in our home.  There are nights that he becomes so heavily engrossed in chatting with strangers that he doesn’t go to sleep until 3:30am, which means I don’t go to sleep until then.  He mainly sings on these sites to other people.  People may look down on us for all the time Jack spends on electronic devices, but he can’t do anything else.  Activities cause seizures, excitement causes seizures, then there’s the behavior part to worry about, he truly has nothing else to do.  16 has been the hardest age thus far for us as a family, dealing with violence, hospital stays, endless trips to UNC, Jack drifting far away from us, the every minute stress from worry.  Good times are hard to come by, worry is always on the cusp of the mind.  So, “Sweet 16” hasn’t been that “sweet”, more like a big ol’ fat, bitter 16.  Do I regret getting Jack involved in the Epidiolex study, yes I do!  That is the one huge mistake I made in all of his treatments.  I know I was doing what I thought was best, but this one decision of saying yes during into a multitude of disasters.