Hurricane Jack

C7E012DC-31C9-4836-970B-1D02F52ABDEDHow was your morning?  Probably a lot better than mine.  I think mornings were created to be peaceful & relaxing.  I have an image in mind of what a perfect morning should be.  Waking up around 7:30, cooking a big breakfast for everyone & enjoying that breakfast outside listening to the birds, then head to The Berry Patch for an entire day of work.  Our life is so far away from that it’s not even funny!  Since the birth of Jack, a calm, peaceful morning has yet to occur.  Coleman nor myself really care for breakfast, however, Ava does.  Poor thing has to wait until Jack is awake & situated in his room before eating (more on that later) because if he hears noise, he’s up.  What it is like to live a day in the life of our family?  It’s not as cool as I try to make it seem on social media.  Let’s face it, most of us are not going to post the negative, only the positive which is a good thing.  Maybe you want to hear it, maybe you don’t & that’s fine too.  Let me give you a run-down of our daily activities:

6:30am, Lee’s day starts.  8:30am, I awaken, but am held hostage in my room so Jack won’t hear me & wake up early; 9:30am Jack wakes.  Coleman & Ava are still in their rooms behind a locked door because Jack may go upstairs & that’s never a good thing.  When Jack wakes, he comes bounding out of his room slamming his door repeatedly, when he tires of that, he starts stomping through the house-to the point where knick-knacks start falling.  He runs back to his room, but not before gouging his fingers in my stomach for a mere 5 minutes.  No amount of talking him down from this act makes him stop.  He likes to think he is a Tiger Sword Power Ranger & he is clawing at his victim.  Shortly after a quick reprieve in his room, he’s back out again playing music as loud as possible & singing, following me wherever I may go.  Now it’s 10:30am & I am just able to start doing what many were able to do hours ago.  I’m late washing clothes, opening up the house, straightening the house, washing dishes from the previous night because Jack was being particularly aggravating.  Once his medications kicks in, most days I’m given a few hours of complete & utter silence from Jack.  He stays in his room for hours sitting on his bed on the computer or iPad.  I want you to think about that for a second.  There are days (although limited these days), this boy does not come out of his room for 10 hours.  Can you imagine not having any physical limitations as far as walking is concerned & not getting out of the bed for over 10 hours straight & he voids only one time a day, everyday.  Jack has gotten some better about wanting to have his bedroom door open, but a lot of the time he wants it shut.  I sometimes go in his room & sit on his bed & think how sad of a life this would be for myself behind four walls.  He is staring at some sort of screen for hours on end behind a closed door & tv off.  Such a sad life for us to watch this, he doesn’t seem to be unhappy though.  Jack goes through so many extremes.  He is either extremely talkative or doesn’t murmur a word, either hyper or so subdued a house fire couldn’t get him up.

In the early afternoon hours, I really don’t see or hear much from Jack.  I am able to do some catching up on my shows, reading, spending time with Coleman or Ava.  Then around 7pm, I start with supper.  We eat around 8-8:30pm because The Berry Patch doesn’t close until 8:30 every evening.  Lee’s days are often 14 hours long.  I know it’s a choice in what we do for living, but it’s really hard on Lee not being able to spend time with the kids, myself, & having the burden of working every single day from sun up to sun down & being the only provider for our family.  When he gets in, he eats & goes to bed shortly thereafter & that is when Jack starts!  He has vampire hours-I’m starting to wonder if vampires are real!  You can set a timer to when he comes out of his room, 10:00pm every night & he is doing the same to me at 10pm that he was at 10am.  Everyone retreats to his or her room because he’s so aggravating to us all, I’m left to deal with his antics.

10pm is a busy time for me.  Most folks are getting ready for bed, I’m just getting started making cobblers or dipping chocolate covered strawberries for our business & Jack is distracting me & right in the middle of it.  10:45pm medication time.  11:15pm, Jack’s in the living room watching Blue’s Clues.  When it goes off, he pretends he’s asleep.  Why me Lord!  I have to beg & plead for him to get up & go to his room.  Finally, he goes after I make it into a race to see who can get there faster.  Guess what?  He’s wide awake!  I close down the house & leave Jack in his room alone to let the medication work its magic (hopefully).  12:45am, the house phone rings-it’s Jack!  He wants me to fix him something to drink.  I take the drink & 15 minutes later, he’s asleep.  Jack falls asleep every night with his computer on his lap, music going, iPad on.  Cleaning off his bed a night is a chore, Power Ranger toys are piled up on the bed, all those electronics, the bed is just a mess.  We were able to increase the dose of his sleeping pill which has helped with an earlier bedtime so much.  However, I am having a difficult time getting to sleep earlier than 1:30am because of the 3am & sometimes later bedtimes he was having for close to a year.  I’ve got to readjust somehow!

Jack finally falls asleep at 1:00am; 1:30am-Amy falls asleep;

How was your day?  Lol

What is really sad, Ava has two friends over today, when they got here, I had to give them the rules.  No talking downstairs because we don’t want Jack to come out.  He would try to go out to the pool & terrorize them.  They can only talk outside & upstairs.  Now can you imagine what these preteen children must think.  It breaks my heart & I know it does Ava’s that she won’t ever be able to have sleepovers with several girls at her house because of Jack.  She & her friends will never be able to run freely through our house like girls do, make a mess in the kitchen, freeze their bras (do girls even do that any more),  or have makeovers.  Dravet has robbed our family so much & continues to do so everyday.

I get tired of the constant planning.  If I have to go to the grocery store, post office, whatever, I’ve got to get someone to stay with Jack.  I despise being on such a rigid time schedule depending on others to help me tend to Jack.  I feel bad for inconveniencing my Mama & Daddy or Aunt Ruby while I run errands or work.  I know they don’t mind, but it is distressing & almost embarrassing to keep asking.  It’s always, let me hurry & do this so I can get back to house.  Lee & I can’t go anywhere together unless it’s something really important.  Everything I do is timed out.  I get tired of that.  No matter, that’s how it has to be for now.  Enjoy life simple inconveniences such as breaking a glass,  burning your toast, or even breaking a leg…I’d take those things any day!  You never know when a hurricane will blow into your home.

Sunsets of the past

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.

Jesus take the Wheel

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

Hashi what???

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.

When the Struggle is Real

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?

Passing in the hall

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!

Shiftwork

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!