Sweet 16

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.

These Four Walls

Have four walls ever driven you nuts?  A lot of the south is currently covered in snow & in an Arctic Tundra.  Think of how you begin to feel after being cooped up in a house staring at the same four walls, this would explain my life to a T over the last 13 years or so.  As we continue to pray for Jack to be helped by medication and/or through Divine Intervention, four walls is what we are still faced with.  Jack still continues to lie in his bed day after day, spending 23 hours & 45 minutes a day in his bed with his computer & iPad in hand.  The 15 minute break he takes from his bed are the few minutes it takes for him to go to the bathroom which is only once a day.  He refuses to shower, refuses to visit with anyone, refuses to interact, refuses to go to the doctor.  I keep hoping & praying for a change & wonder when the change will come or if ever.

Thankfully, I have never been the victim of a home invasion, attacked by another person other than Jack, or abuse (let’s face it, if it were anyone else, I would use the bat in my trunk on them) but I sympathize with the fear victims have & continue to have due to violence because of Jack’s violent attacks on Lee & myself.  I never really thought much about PTSD.  Never had feelings either way regarding the disorder, but I understand how one can develop it.  I often have flashbacks of Jack lashing out creating a taste in my mouth that is indescribable.  Have you ever tasted fear?  It is not a good taste, a taste so bitter & different than anything else that you will never forget it.  Most of the time, I am home alone with Jack during the day & that comes with a reasonable amount of fear.  Fear that he may get out of hand with me home alone & unable to get to a phone.  If I don’t answer a question like he wants me to respond, there could be backlash, if I don’t agree with him, he gets testy, the only way to describe him is ill or as my Daddy says, an ill-box.  And I just don’t know how this all happened.  The smiles are rare & the sparkle in his eyes has vanished.  The obsession with his computer & iPad is unlike anything I have ever seen before.  He is unable to break free from either for anything & that includes eating.  You have to treat our home like the study library at Duke University!  Extra noise from visitors or from us can be & has been negative stimuli for Jack, getting him riled up.

So now you know why these four walls can make me nutty.  My winter days are often spent day in & day out staring at the same walls.  I can’t say, Jack load up, we’ve got to run to the post office, grocery store, Nan’s, etc…  It doesn’t work that way.  In order to keep the peace, we must do what Jack says.  I know I said I would continue to part 4 in the next blog, but I felt compelled to write about what cabin fever really is.  It’s not stuck in the house a few days because you are snowed in, it’s not being laid up with a sprained ankle (which I just had last year) & require bedrest, it’s not because someone had to reschedule a lunch date, true cabin fever for us is being at the mercy of another person.  In this house, we all are at the mercy of Jack.  What we do & when we do it all depends on how Jack is, what sort of mood he is in.  If we have something planned, the question Coleman & Ava always ask is, “who’s watching Jack?”  No task is easy at this house.  Every single detail must be planned out in advance.  If we need to do a family outing when other family members need to be with us, then we have to pay someone to watch Jack.  Now, we have been blessed with a wonderful person that helps us with this, Linda Teal.  I know Jack is in great hands with her & our family is so thankful to have her.  Linda is the reason I am able to work at The Berry Patch in the summer so that Lee can farm.

Have your ever experienced a surreal feeling?  I have Thanksgiving 2016-not that long ago really.  Jack asked me to take him to the movies to see The Good Dinosaur.  I didn’t mind because Thanksgiving night is always depressing to me any way, everyone is full & sleepy in our family any way.  None of the other kids wanted to go either.  It was just Jack & myself.  On the way to the movies, Jack never once touched his iPad, instead he conversed with me the entire time, saying sweet things like I was the best mom (he is southern, don’t know where he gets mom from haha), it was a wonderful night.  Once home, I reflected on our night.  I thought it was actually one of the best nights of my life!  This was the last time Jack asked me to take him somewhere just he & I, the last time he would want just us two to do something special together.  This did not hit me until the other day.  I now know why that experience was so surreal, because it was the last time Jack would ask for special time.  I am thankful to of recognized that night as being special or else I wouldn’t be able to reflect upon it.  If you experience a surreal moment, take it in-there’s a reason for it.

People have told me that I need medication but I don’t think so.  I always think that I have handled an extremely difficult situation well.  I don’t wallow too much & try to find comedic relief in lots of ways.  There is no pill that could make me feel any better.  No pill to make me not be fearful of what the day could bring.  No pill that could mask the sadness of what our lives & Jack’s life has become.  No magic pill to make me less testy.  These four walls aren’t so bad.  Yes, they might need a touch up here & there, but as long as Jack is not raging, then my four blue walls will be one of the building blocks to help keep me standing.

Why does the other shoe have to fall?

Since the last blog, we have made some progress.  Jack has been weaned from the nightly muscle relaxer replaced with Trazodone to help aid with sleep & he has adjusted to yet another seizure medication.  The adjustment to the new seizure medication was a bit of worrisome process.  Jack was sort of zoned out much of the time, not saying more than a few sentences a day & not eating.  There were times he would go 36 hours without ingesting food & when he did, it was nothing more than one Big Mac.  The good news is he has gotten over that hurdle.  His appetite has picked up some & sleep is much improved.  One thing that is concerning is the lack of voiding Jack is having.  He went 54 hours without peeing & then peed on himself in his sleep.  It isn’t because he is not drinking, but has such severe OCD with the computer, that he does not want to get up to use the bathroom nor take the time to eat.  When Jack has voided, it has typically been in his bed for the last few weeks.  Most recently being today-twice in the bed!  Once this morning on the floor in his bedroom sometime in his sleep, then when he was taking a nap this afternoon.  Naps are never an event for Jack but he is sick with a fever, as am I.  Ava started this mess last week, it is slowly working its way around the family…dear Lord, save us by not letting Lee get sick (hate a sick man) lol.  I have a baby monitor in Jack’s room that allows me to hear what is going on, I feel terrible I missed this one, blaming it on the sickness.  I usually sleep with one eye open, one eye closed.  My washing machine is in constant spinning mode, I need one of the commercial sized “Big Boys” that the laundromat has!  Jack’s bedding has been washed more than any Hampton Inns bedding!  I just told my mama & sister that I made up Jack’s bathroom tonight (meaning making up his bed)!

There has also been a slight change in his behavior.  He hasn’t been as snippy as before.  We certainly hope this is the balance we have been praying for.  We are nervous though.  For those that are not familiar with the term “honeymoon phase” used to describe seizure medications, it is when the seizure medication works for about 6-8 weeks & boom, the medicine stops working.

Christmas was hard this year in more ways than one.  First, Jack never made it past the kitchen for weeks to look at the Christmas decorations.  This was a child that got so excited every single year about putting up decorations, hanging his stocking & the ornaments he made, & talking about what Santa would bring him.  With Jack’s intellectual disabilities, we always thought we would have that child-like Christmas.  Watching Christmas movies & cartoons was always a major highlight for Jack, he never even turned on his TV.  Trying to get through the holiday by grinning & bearing it was tough.  It was like we were watching our child die in his room.  Not eating, not peeing, not talking, was heartbreaking.  Christmas morning, we had to change our typical plans which is inviting family over for a big breakfast Lee prepares (which wasn’t half bad because that man uses every dish, pot, pan, & utensil in the house) since we did not know how Jack would be.  Christmas morning was disappointing for Jack.  He never once told me what he wanted for Christmas.  He doesn’t go anywhere to need/want any clothes, nor is he into toys any more.  The sadness that invaded Jack’s eyes was almost too much to bear.  It was really a melancholy Christmas.  We are usually on high alert during Christmas time when we are around family & friends because that is when Jack tends to have seizures, that was not an option this year.  He refused to go anywhere.  So when my parents had their Christmas Eve gathering, Lee stayed home with him so that I could go with Coleman & Ava.  However, he did go to my parents Christmas day & barely got through it.  He was acting weird, Lee & I were scared to death.  We left early to prevent any seizures or behavior disruptions.  For years, we dreaded holidays & special events because of the frenzy Jack would work himself into with lack of sleep, behavior problems, & seizures, now there has been a complete 180 turn.  To see friends enjoying their holiday or even a simple meal with family & friends does make one jealous when our lives are not easy & can not be enjoyed like so many of you.  I know it’s not right to be jealous but I am & I pray that I can overcome that feeling.  After 16 years of nearly everyday feeling like an emergency, it gets to a person.  Now, don’t go hiding your vacation pics from me, I still want to see them but I will secretly hate you!

Just a few days ago, Jack turned a corner.  He came out of his room a lot (for him), he even ate breakfast which he never does & even carried on several conversations & then the other shoe fell…he got sick!  Illnesses are always hard on Jack.  Fevers bring seizures & often times bad seizures, ones that land us in the ER.  It means around the clock temp checks, making sure he is drinking enough along with lots of ibuprofen.  This is the longest I have kept our Christmas decorations up.  I usually have them put up a few days after Christmas, can’t swing that this year.  I did manage to get the tree down today & boy was that thing crispy!  After vacuuming the whole house, I was done with my un-decorating for the day, the fever getting to me as well.

Please continue to pray that this medication will continue to work to keep Jack calm & help to stimulate his appetite.  A statement that I NEVER thought I would say, the seizures are secondary, keeping the behavior issues at bay is the key.  As I end this blog, I will start the next one at part 4 continuing the story as we began to learn about Jack’s diagnosis.  Happy New Year’s Blessing to each of you.

Home

Well, we (including Jack too) have been home from the hospital for a week now.  No real changes have been made as of yet other than a sleep aid & weaning off a muscle relaxer.  With Dravet Syndrome, the processing of medications is not the same as it is in most people.  DS patients are highly sensitive to medications or resistant-it is extremely hard to find a good balance with medications.  Mental health care is certainly lacking in this country.  I have heard reports on this for years without ever really giving it much thought until it happened to us.  We learned that placing Jack in a facility is not as easy as saying he needs to go.  Placing Jack would be heartbreaking but may eventually have to be a possibility.  During our hospital stay, we learned that such facilities have a waitlist. When you factor in a severe disease like Dravet Syndrome, the list of placement opportunities lessens dramatically because you have two disorders to contend with, behavior & health issues.

Things are the same, Jack is not raging which is wonderful & he is getting back to his regular sleep routine.  We are going to begin Jack on a new medication today Wednesday, December 20 that may help his behavior, seizures, & weight gain.  Of course behavior control is what we desire first & foremost.  I ask that each of you reading this blog to pray that the new medication (Depakote) will be the miracle we have been praying for.  Jack’s appetite is severely lacking too, he lost interest in eating nearly totally this spring, having lost 25-30 pounds since.  He was skin & bones then, now he is worse.  This medication can help to stimulate the appetite too.

I often wonder if I should have ever started this blog.  Worried that Lee, Coleman, and/or Ava would be embarrassed about me writing of things that have gone on or me telling too many details about our family situation or worried that people in the community would look at us differently-which I have definitely been on the receiving end of that.  We don’t want sympathetic glances, only your prayers.  I feel it’s important that others know the hardships we are facing.  Only good can come from writing this blog which is prayers.  We have fought this battle for 16 years every.single.day.  Someone once said to me, I don’t know what you did to deserve this but it must of been bad!  I wish I knew!

The challenges we have faced seem to be cruel & unusual circumstances (hence the name of my blog & maybe my one day bestseller)!  I would love to be somewhere on the beach, toes in the sand, not a care in the world.  My fantasies take me there periodically.  Vacations are out of the question for Lee & myself.  We have to depend on my parents & my sister to take the kids to the beach for their summer vacations.  Taking Jack out of his element only elevates his situation.  This spring Coleman went on a cruise with my Mama, my sister, & a family friend.  I am eternally grateful that they could give him that experience but I was heartbroken as well.  If there is anything exciting going on within a two hour drive, I take Coleman & Ava as long as I can be home that night.  Other vices that get me by this cruelty are Young & the Restless, QVC (love to home shop), playing softball with a great group of ladies, my Bob & Sheri podcasts, & listening to my favorite radio station WLWL 770am their speciality is beach music.

This Christmas, we are going to try to provide a happy season even though we are struggling with sadness at each breath.  As we edge closer to Christmas, please join us in prayer that this medication will be our Christmas miracle.

The knot

We finally made it out of the intensive care unit at UNC to a regular room on the children’s ward. The experiences Jack & our family has gone through the last few days/months has been unimaginable. The medication the ER staff administered at both Richmond & UNC called Haldol caused Jack to have an adverse reaction. The reaction is called Neuroleptic Syndrome that causes severe muscle rigidity, body contorting, mouth & jaw not being able to close, swelling of the tongue, eye deviations, & fever. His body was in the shape of an S & couldn’t turn his head. It was like Jack was in a constant seizure. This reaction started on Friday evening & into early Sunday morning. The peak of the pain from this condition was Saturday night, Jack cried out for hours, there was nothing that could be done for him to lessen the pain, he had to wait it out until the medication moved out of his system. We went from one torturous event to another, first the aggression, then the horrible side effects.

Upon awakening at 5am Sunday morning, Jack was much improved-no more body contortion. Now we are out of the ICU & in a regular floor children’s room. We are still left with the dilemma of what to do with Jack. The psychiatric team was not on duty for the weekend. I mean really? Don’t people need mental health care on the the weekends too? Mental health needs are not a Monday-Friday only illness!

I know I talk a lot about how I feel, I can only imagine how Coleman & Ava must feel. Ava is a nervous wreck & shows it but Coleman not so much. Coleman helped us so much the night Jack went off. He called 911, followed us to the hospital, helped restrain Jack in the ER when needed. He finally left the hospital when UNC arrived to pick Jack up around 1:30am & spent the night at my parents. During this time, Coleman learned that night of the ordeal he had been accepted to UNCW. What a heartbreak he must of felt that this occasion could not of been congratulated properly by the two people that love him the most. He is also working on finals, is the sound guy for our church, & became the head of The Berry Patch overnight. Lee & I had to miss our church cantata for the first time ever which meant we missed Coleman’s hard work. Ava is still a little girl at 12 years old. You can hear her heartbreak when things become troublesome in our home. Her cries shatter our hearts. I can understand her fears & Coleman’s silent fears too & it puts me in a knot to think of what they must struggle with inside. The endless amounts of time we have been separated because of hospital stays with Jack are hard on us, it’s especially hard on them.

I titled this blog “the knot” because we have many knots in our family. The knot in the pit of my stomach not knowing what will become of Jack’s situation, the knot in my heart that our family may not be the same dynamic any more, the knot in mine & Lee’s neck & shoulders from these terrible sleep conditions, & the big ole knot in my hair from not having proper hair materials while staying in the hospital. Our knots are plentiful it seems. We all have knots in our lives whether big or small, not sure why our family seems to have so many. We are trying to have faith that we can one day understand why we have gone through the trials we have faced.

We still need prayer. Please pray specifically that we will be guided in the right direction with Jack’s situation. That the team of doctors will devise a plan that we can feel comfortable with, that we will all be safe, pray for Jack to be able to calm down & never be violent again. Pray that our knots will straighten & we can provide a safe, loving home for all of our children. Thank you all for your encouragement, your faith, your prayers, messages, texts, & special deliveries. Will keep you posted!

Current Status

Current Status Friday, December 8, 6:30am: Lee & I have been up for over 24 hours now. No, we have not taken up occupations as truck drivers or real doctors, but we are now in the ICU at UNC. Our morning started off early Thursday with Lee rising for work & me getting up with Jack.

Jack has not bathed in several days. On Thursday evening, Lee was asking Jack to bathe when Jack lost it. I was at dance practice with Ava when Coleman called asking me to get home fast, Jack was trying to fight. As stated in the previous blog, Jack has violent rages. These rages aren’t your small outbursts, think about a person going crazy due to a drug withdrawal. Jack is 5’8, all skin & bones, however, he is strong as an ox.

After getting a few strong neighbor men over to help restrain Jack, EMT’s & the police were dispatched. Jack was taken to our local ER during the rage, even had 2 grand mal seizures. After various meds, he finally calmed down 4 hours later was then transferred to our current status in the ICU.

In the next few days our family will have to make decisions no parent should ever be forced to do. Please be in prayer with us & Jack’s medical team to help us all make the best decisions possible.

Part 3, living life with Dravet Syndrome

On my last blog I wrote about our family adjusting to our new living arrangements of the home we were renting due to losing our home because of incredible medical debit, the loss of one of our businesses, & the overwhelming exhaustion of the extreme loss of sleep from the multiple seizures that disturbed Jack every single night not only in his sleep but during the day as well.  This all occurred around the year 2007.  It was also in 2007 that we finally had a diagnosis for Jack.  After 6 years of the doctors saying Jack only had medication resistant epilepsy, UNC finally diagnosed him with Dravet Syndrome which is a mutation of the SCN1A gene.  DS can be an inherited gene, but in Jack’s case, this was a spontaneous mutation occurring on its on.  All the symptoms that I read about regarding Dravet were starting to show.

The symptoms of Dravet are as follows, thank you to http://www.dravetfoudation.org for the symptom list:

  • Prolonged seizures
  • Frequent seizures
  • Behavioral and developmental delays
  • Movement and balance issues
  • Orthopedic conditions
  • Delayed language and speech issues
  • Growth and nutrition issues
  • Sleeping difficulties
  • Chronic infections
  • Sensory integration disorders
  • Disruptions of the autonomic nervous system (which regulates things such as body temperature and sweating).  Current treatment options are limited, and the constant care required for someone suffering from Dravet syndrome can severely impact the patient’s and the family’s quality of life. Patients with Dravet syndrome face a 15-20% mortality rate due to SUDEP (Sudden Unexpected Death in Epilepsy), prolonged seizures, seizure-related accidents such as drowning, and infections.

For years, I expressed to Jack’s doctors that he would so frequently have seizures in water, whether in a pool or a bath.  He would also have seizures in the heat, at special celebrations, or when he got excited.  These are all classic signs of Dravet.  Testing for Dravet at that time was just starting to become more broad, this was the reason for the delay.  Even though testing is often performed much sooner now, there is still no great form of treatment.

I delayed sending Jack to kindergarten until age 6.  He attended a small, private school that was a great fit for him, only 4 hours of class each day.  Can you imagine how nervous we were as parents sending this child to school 5 days a week?  Our mornings were rough to say the least.  I had three to get ready for school every morning alone while dealing with seizures & an utterly ridiculous amount of hyperactivity from Jack.  Jack’s morning seizures at this time improved after 30 minutes upon awakening, having multiple seizures every morning was the norm.  I would drop Coleman off for second grade at one school, Jack off 10 miles from that school, & then Ava at her preschool 10 miles away.  I frequently stayed in town since Jack’s school was 20 minutes from our house because I was so terrified he would seize at school.  Praise the Lord, Jack never had a seizure at school.  There became a point that I would go back home, I felt more comfortable with the thought of Jack being in very capable hands at his school.  When school dismissed at 12, I would then take Jack nearby to have occupational & speech therapy.  Other therapies I took him to were to an intensive occupational therapy.  The  drive was an hour one way twice a week.  The therapist really focused on developing core muscles.  Lack of muscle tone, especially core strength is a major problem for DS patients as well as balance issues.  Looking for any way to help lessen the seizures, I also drove Jack several times a week to have neurofeedback.  This service cost $100 EACH time!  Neurofeedback is thought to retrain the brain.  It did not help at all, this is what you call desperation to help your child.  I tried all sorts of supplements also to no avail.  If there was something out there, we tried it.

Imagine having an active, walking, talking child that could not participate in any activities.  Well, this was Jack.  Any sport we tried him in caused seizures.  The running, jumping, the excitement of it all brought him down-literally.  Even taking a bath & swimming was dangerous.  There was/is was no warning to his seizures.  The grand mals (that’s the big ones) would make him fall completely over head first.  We were always taking precautions.  During his prime seizure time 7am-8am & 7pm-9pm, we would always try to make sure he was sitting down.  Having to reason with a mentally disabled child was difficult to say the least.  The computer, video games, & television became our best friend.  I did learn about a wonderful, semi-local program that Jack could participate in through a local university-therapeutic horseback riding.  The folks there were great.  They worked with Jack while he rode in skills he was deficient in like word pronunciation & math skills.  The horseback riding, computer, & television were literally all Jack could do.  Attending VBS, birthday parties for friends, even parties for us boring, old adults were too much.

Since I was running myself to death trying to get Jack to his private school, speech, & the other therapies, I decided to bite the bullet & enroll him in a public school a mile from our home.  Jack became a Mineral Springs Bear in the second grade.  The big difference here was the class size was huge for him-30 kids compared to 10 kids, but he was able to receive speech & occupational therapy on site & I was around the corner in case anything went wrong at school.  I was also able to contribute to our business The Berry Patch for the first time in years.  After getting all the kids off to school, I went to work & it felt great.  Although Ava got out of her preschool program at 11:30, I was still able to go in for a few hours & do some much needed attending to.

During the ages of 8-9, Jack started going through puberty.  This is when his personality starting changing.  Not only was he dealing with severe, frequent seizures, but this was when the deficits really started to show.  A terrible speech impediment, balance issues, learning difficulties, horrible acid reflux, violence, the inability to awaken Jack for school, stubbornness, being hard-headed-all the things you would deal with with teenage mood swings but at the age of 8.  There was also the extreme hyperactivity that medication did not touch.  When Jack woke up in the mornings, he was awful!  This was something that I had to deal with each & every morning alone while trying to get two other kids prepared for school.  He would do things unimaginable.  I remember having these walking sticks like ski poles, he grabbed them one morning & started hitting everything in the house with the sticks.  Broke several items that morning, one being a crystal chandelier in the dining room.  This is when I coined the term “bull in a china shop” for Jack.

As we tried to rebuild all that was lost in our financial deterioration, Jack was finally able to get Medicaid. at the age of 9.  It was in 2010 that an auction on a home was going on just two houses from our rental.  Lee decided to walk up & try to buy it.  He did!  We were so thrilled.  The house that was purchased at the auction is the house we live in now.  Although a house built in the early 1920’s that needed lots of work, we knew we could make it beautiful.  Our farm market/ice cream shop business was gaining strength & we were no long swamped with medical bills.

The above scenario with Jack’s medical condition continued to play out.  We even made it on a family vacation for the first time ever with all five us plus my parents for 5 days at Disney World.  This was one of the most memorable times ever.  Coleman became involved in an extra curricular activity-goat showing & Ava began participating in local sports.  Our family seemed to be doing well on the outside, but on the inside we were all reeling.  Jack was starting to show violence towards me mainly.  I was/am the main caregiver which often means the main caregiver is the target of anger.  I have had Nintendos, pencils, fists, & more thrown at my head on more than one occasion.  Going through the surge of puberty hormones, Dravet Syndrome alone, & not having the reasoning skills to understand his limitations, & all that was going on did not help with the case of violence.  Soon visits with the psychiatric department followed & medications were tried.

The thing about Dravet, no one medication does the trick for all.  What works for one may only work for a few DS patients.  It is a very complicated, complex illness.  When Jack started to become violent, we reduced triggers.  These triggers were making one transition from the other, being rushed, & crowds.  We absolutely tried every medication that was recommended under the sun.  Nothing seemed to help and/or made matters worse.  Our lives seemed to be ruined as we considered placing Jack in a home.  Can you imagine the thoughts of sending your medically fragile child that you have cared for for years to a medical facility to spend the rest of his life?  This was not something I could fathom but did consider.  It would be different maybe if he just had behavior issues, but this was far more.  Having a multitude of medical conditions, I felt like mama’s care was best.  So we limited Jack’s exposure to our other children in order to keep them safe.  There used to be a bond between the three-days playing in the sandbox together, afternoon picnics at the park, bike rides through town.  It all came to a screeching halt when these behaviors exhibited.

What a mentally exhausting blog for me to write.  There is so much more about this time frame I could post about, but you get the gist.  I always thought my son would have just epilepsy…