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.


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  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 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…

Part 2…Maybe you will understand the statement the Young & the Rest-less!

If any of you readers are wondering why I am breaking this story up in parts, it’s because it is 16 years worth & each day was & is something different.  A little review from part 1 in the previous blog.  Jack began having seizures at 6 months old (100’s a day).  For 6 months, he suffered tremendously with daily seizures of multiple types, testing, ER visits, shots, & more.  Just after his 1st birthday, Jack started treatment for his medication resistant epilepsy in the form of the ketogenic diet.  The diet was bliss for our family of 4 for 2 1/2 years, no seizures & no seizure medications for such a long period-we thought we found our cure.  Sadly, that day ended in a bout of sickness that brought Jack out of remission.  It was also around that same time I found out we were expecting yet another child.

Newly pregnant with a 3 year old & a 4 four old, I just did not see how I was going to manage things.  I never had a problem parenting the boys, loved being a stay at home mama.  We would read books all the time, color, play outside, we were on our own time schedule.  Being a parent was not an issue, it was being a parent to a child that had to be watched every moment of the day.  I was scared to death to have our third child, terrified that she may end up with same disorder that Jack had.  At this point, we did not know what Jack had other than medication resistant epilepsy even though he had undergone a series of genetic testing to rule out any number of disorders, I always knew it was something other than epilepsy.

In January of 2005, Jack woke up with a high fever, soon a seizure followed.  This was his first seizure in 2 1/2 years.  It was a hard grand mal seizure.  Having gone so long without any type of seizure at all, I knew something was wrong.  We rushed him to the neurology clinic in Charlotte only to be told there was nothing wrong with him by his neurologist.  Well that didn’t go over too well with me.  We ended up taking him to Presbyterian Hospital in Charlotte.  After investigation, it was determined that Jack had a strep infection in his bloodstream (which I say came from the buggy at Walmart)!  After multiple seizures, medications to treat the fever & 5 days in the hospital, Jack got better with the strep illness but never regained seizure control.  The seizures were back with a vengeance!  I was ticked with his neurologist that told me nothing was wrong with him, so we moved his neurology care to UNC Chapel Hill.  A mama’s instinct is rarely wrong!  Jack was also still under the care of pediatric electrophysiologist at Duke University for his heart condition & on his heart medication. Shortly thereafter, Jack was weaned off the ketogenic diet & was allowed to eat & drink anything.

The fit of seizures that would follow Jack’s strep illness was maddening.  Instead of a baby having so many seizures, I now had a walking, running, talking, active toddler to worry about seizing all day.  The same seizures that Jack had as a baby were now rearing their ugly head in the toddler years.  Loading up the boys & riding was now not as easy to do since both boys were very active. He was having 100’s a day of the arm trembles, head falling over, full blown convulsive seizures, even seizures that would quickly interrupt his speech mid-sentence.  At this point, my husband had constructed The Berry Patch.  For those that don’t know of our business, we own a homemade ice cream shop that’s in the shape of a huge strawberry/farm market & are strawberry farmers as well as other crops.  Lee also sold the poultry farm in order to devote his time to his first love, farming.  Those days were harder than when Jack was a baby.  Not only did Jack have this huge seizure condition, Coleman (our oldest) was in speech therapy, Lee left the house at 5:30am & wouldn’t return until 7-8pm depending on what the season was, I was pregnant, plus my parents still worked full-time jobs.  There were days I wouldn’t see anyone other than people at the doctor’s office or speech therapy facility.  By the time Lee got home, he was wiped out from his work day & was in bed an hour or so within getting home.  I was a one woman show, scared & tired.  There was NEVER a day a babysitter was called in-who else could handle such turmoil?  I prayed everyday for some sort of relief to come to Jack, whether it be complete healing or a new medication, but no relief was found for quite a while for the seizures & little did I know things were going to get worse.

I pleaded with Jack’s cardiologist at Duke to fix the heart issue of WPW when he was 4 thinking that this may have something to do with Jack’s seizures (this can happen, but not in our case).  He agreed, in August 2005, Jack had a cardiac ablation to repair the extra pathway that caused the high heart rate he experienced after birth, this did not stop or lessen the seizures, but at least I could safely say that was not the cause.  In times like that, you get desperate.  Not only was this amount of seizures affecting Jack, it was affecting our whole family.  I consulted a psychic & a medium trying to see if they could tell me why this child was going through this.  I was told to look into his pancreas & lungs, I soon realized what a fool I had been.  I also took Jack to an acupuncturist-I will say that it didn’t help Jack but has helped me & Lee…another story for another time.

Our third child Ava was born November 14, 2005, super healthy & a really good baby.  The boys were excited!  I remember the day I had her, my parents brought the boys to the hospital to see us & Jack started having seizure after seizure during his visit.  The plan was for Lee to stay the night with Ava & me at the hospital, but it was more sensible for Lee go home with the boys & take care of Jack.  Mornings & evenings were the worst time of day for Jack with the seizures.  He had clusters every single morning lasting about 30 minutes, sometimes after the clusters of seizures, he had a big one.  You could count on 7am seizures everyday & 7pm seizures every night.  I knew I had to get home, I told the doctor I wanted to leave the day after delivery.  Thankfully, I was blessed with easy pregnancies & deliveries with all three so I was able to leave & get back to motherhood.

Jack could not sleep alone since so many of his seizures were during the middle of the night.  We had a full bed!  Ava was in the bassinet next to me along with Jack & Lee.  When we moved into the home we were in at that time, we purchased all new furniture (at that time we only had Coleman).  Lee & I had picked out a queen size bed.  Once home I & got to thinking that a queen was just not going to be big enough for us.  I quickly called the furniture store without consulting Lee cause that’s what women in charge do & said, send us a king.  Boy, was Lee upset!  I think it was $400 extra & I blew it for a few more inches.  Little did Lee know that we would need those extra inches, I like to call those nudges from God.  There were times when all 3 kids, Lee & myself were snuggled up together due to sicknesses or just cuddle time.

In March of 2006, something had to be done to help relieve these seizures.  Jack had tried nearly every form of medication known to man & was on adult size doses of them.  We opted to try an implant called a Vagal Nerve Stimulator (VNS).  The VNS is about the size of a dental floss box & would be inserted in his chest & the wiring would be threaded up in the vagal nerve along the side of his neck.  The VNS sends impulses to the vagal nerve in hopes that the seizures would reduce & not be as hard on him.  This worked well for about 6 weeks which is what the epilepsy world calls the “honeymoon” phase.  This was the case for everything we tried for Jack.  Not only were we dealing with this cruel seizure disorder, but Jack had strep all the time.  The first & sometimes the only symptom being a high fever which resulted in severe seizures.  Once the strep illness started at age 4, we dealt with that for 5 years-sometimes 2-3 times a month.

Also during this time, my brilliant (he really is smart) husband decided to start another business venture in our neighboring town of Rockingham, NC.  The town we live in is small, Rockingham isn’t a whole lot bigger.  The business was called Sundae Scoops.  We served hot dogs, chicken strips, & of course our homemade ice cream.  Gluttons for punishment you might say & I would totally agree!  I never got to work at The Berry Patch because I was confined to being home but that was okay, I knew my children were safe.  I did work the second shift at Sundae Scoops.  Lee setup first shift, went to manage The Berry Patch, he then came home around 4pm & I was out the door as soon as he walked in only to return after 11:30pm.  I was still nursing Ava, I would nurse her at 3:30pm & then again as soon as I walked through the door that night.  I couldn’t go to sleep until after 1am because I was amped up from working, only to start my day again at 7am getting Coleman our kindergartener ready for school.  Sundae Scoops business was sparked because bills were piling up, we tried to do anything we could to make money.  One of my business ventures was driving an hour from home to a customer return store for QVC & HSN (the shop at home stores).  I would purchase all of the SPANX undergarments available to list on Ebay.  I also cleaned out people’s closets & sold clothes on Ebay.  This was a nice hustle for quite sometime, but was not nearly enough to help with the mountain of medical bills we were facing.  One of the more amusing SPANX tales from my days of sales:  I shipped a pair of the undergarments that promised ladies a sleeker look.  I did not open the package I received from the store I purchased them from-BIG mistake.  The lady emailed me as soon as she got them to tell me that a used maxi pad was in the crotch of the SPANX!  I was mortified of course & sent her a refund.  I learned that inspection was a must before selling these any more!

We were a self-employed family & had a child with health problems, monthly insurance premiums were outrageous (still are), plus our deductibles were high.  It did not take Jack long to meet his deductible but he also maxed out several services in a year, one being his pharmaceutical service.  The rescue medication we used for seizures lasting over 5 minutes was $100 with insurance, once we maxed out the pharmaceutical coverage, that mediation became 100’s of dollars which was paid for out of pocket. We were having to use this medication several times a week!  The surgery Jack had for the VNS we later found out that insurance would not pay ANYTHING towards the bills because the FDA had not approved the surgery for children under 12.  The new business in Rockingham was failing, after a little over a year we folded on Sundae Scoops & had to sell our beautiful home & move into an awful rental home.  This rental was nearly my demise.  It had brown paneled walls which is fine if you like that but so not my jam!  I wanted my beachy tones of sand & aqua walls.  Only two bedrooms for a family of five.  Ava was sandwiched between the washing machine & dryer in her crib & one bathroom that was just gross.  The silver lining about that move was our neighbors.  My aunt Sue lived right beside of us.  She was a great help to me.  This was the first time I could experience some sort of freedom.  I could call her & say watch the kids for me while I ride to the grocery store…amazing!  Also, the kids had a friend next door too.  She was wonderful & gave Coleman & Ava a friend to ride bikes with, ball, whatever-something they never got to experience before because of the severity of Jack’s health issues.  This again was one of God’s nudges.

Part 3 will continue soon.  The picture above is of all three kids, Coleman is holding Ava & Jack is enjoying one of his first ice cream cones from The Berry Patch. Thank you all for your kind comments!

In the beginning…(Part 1)

On August 1, 1998, Lee & I married.  On April 19, 2000 we had our first son, Coleman.  Nearly 15 months later, we had Jack on August 2, 2001.  At this time, Lee was a poultry farmer & I was/am a stay at home mama.  Right after Jack’s birth, the nurses mentioned his heart rate was high.  Not mentioning anything else, I thought all was well.  After transitioning to a regular room for the night, one of the nurses came by for a check on us when Jack was quickly whisked away-his heart rate had soared.  The next day after doing an EKG, it was discovered Jack was born with a rare heart defect called Wolff Parkinson White Syndrome (WPW).  WPW occurs when there is an extra electrical pathway in the heart chambers that can cause an extremely high heart rate.  Many individuals that have WPW are diagnosed by accident, typically by getting an EKG for pre-op testing.  I know God’s hand revealed the WPW before we left the hospital.  In order to keep Jack’s heart rate lowered, he was placed on a beta blocker just two days after birth.  This was a very scary time for me as a new mother.  There are all the wacky after birth hormones going on, caring for two babies & this whammy.  I was terrified Jack would go into a super fast heart rate during sleep, so he slept in the same room with Lee & myself, was nursed, & watched like a hawk!

One particularly funny story from all of this (even won a contest on the radio with it), was Jack’s medication for his heart issue was set to give every 8 hours.  We went home from the hospital on the schedule the nurses were dosing Jack, which was 6:30pm, 2:30am, & 10:30am.  It was 2:30am & you better believe that medication was going to be given at that time.  New parents of a child on a major medication are NOT going to miss a dose!  I sit up, medication is on the nightstand & tell Lee to find the baby.  Well, he gets up & starts searching the house for this one month old baby.  Where could a baby go that could not do anything for himself?  Changing his diaper?  Bathing?  Enjoying the peacefulness of a lullaby?  Being extremely exhausted from the frequent middle of the night nursings, I blame what occurred that night on a severe case of sleep deprivation!  After a few minutes of searching for the lost baby, I realized I had been holding Jack the whole time!  We got a good chuckle out of that & fell asleep within minutes of dosing.  Always a fun tale to look back on.

Once the newness of the diagnosis of WPW wore off, we quickly adjusted the medication dosing so there were no middle of the interruptions.  Life was starting to look fairly normal for us after a few months.  The life of a poultry farmer (hubby’s occupation) is a busy one.  Alarms go off in the middle of the night, early morning risings, & 10-12 hour days everyday.  So it was pretty much me & the boys all day, everyday.  My mama was/is a great source of support.  Spending the night when Lee had to be gone, coming over so I could nap, or taking Coleman to spend time with him.  Soon, life took a sharp turn south.

In February 2001, at Jack’s 6 month checkup with his pediatrician, all was great.  Heart looked good, growing fantastic, making milestones, vaccinations received.  Four days later, Jack was in his play seat at my parents house & started twitching on his left side.  His face was twitching as well as the rest of that side of his body.  This lasted a few minutes.  We drove to the hospital but by the time we arrived, the twitching stopped, Jack was still checked out by the ER doctor who ordered a CT scan (which was normal) & deemed okay.  Two weeks later, the same thing happened again.  This time, we called the pediatrician who referred us to Duke University for neurology treatment, Jack was having seizures.  My first thought was this has to be from the vaccinations.  It was during this time that the controversy of a link between autism & vaccines was going strong & I jumped on that bandwagon!  To me, the connection was there.  I even filed a vaccination injury report.  Nothing ever came from that.  Let me make this clear, the vaccines were not what caused the seizures!  Jack does get vaccinated now, took us a while to play catch-up.

After the second seizure, Jack started having very small seizures where his head would drop for a split second, this would occur in clusters of 100 or more at a time.  Imagine a crawling baby with his head already close to the floor & his head would just keep dropping forcefully over & over, or his arm would tremble for second but 100’s of times within an hour.  No answers were given other than epilepsy from Duke, Jack was started on Phenobarbital (a common seizure med) & no relief-if anything, the seizures were worse.  The seizures types varied, the length of the seizures got longer, more intense & more often.  I was a nervous wreck!  It pained me to hold my child who was constantly seizing.  I was scared, couldn’t eat, had no appetite.  I’m a tall girl, it was around that time I was beginning to look a little Olive Oyl-ish (you know Pop-Eye’s girlfriend).  So that I would not have to physically hold Jack & feel him having seizures, I would load the two boys in the car & ride for hours everyday.  I knew that him riding would put him to sleep which meant he probably wouldn’t have seizures while napping.  I’ve seen roads in our county & neighboring counties that most have never.

For 6 months, Jack had to suffer with seizure after seizure, countless ER visits, specialist appointments, MRI’s, CT scans, blood draws, EEG’s & boy were the EEG’s a mess!  Jack had the most beautiful, curly hair ever.  After having his first EEG, his hair was ruined-it had to be cut off to remove the glue…such a sad day.  By the age of 9 months, several seizure medications were added to his regimen & no relief was found, the medications did not even take the edge off the seizures.  Jack was diagnosed with medication resistant epilepsy.  There was one treatment that we did for Jack where I had to give him shots of steroids myself when he was 9 months old called ACTH.  This was done at home for a month with some relief but the seizures quickly started back once treatment was complete. During this time, friendships were lost, endless plans canceled, going out with my husband came to a complete stop, & the phone stopped ringing except by a few family members calling to check on things. I became a mother who literally was running on fumes, sleeping with one eye open & one eye closed.

My aunt Sue, who has now passed away was watching a movie featuring Meryl Streep called First Do No Harm (true story btw).  This movie is about a mother whose child was having countless seizures like Jack.  Medications were not helping her child, she looked for alternatives & found a possibility called the ketogenic diet.  Once the diet was implemented, the child’s seizures lessened.  Sue told me about this “miracle” so I decided to investigate.  Duke did not have a ketogenic dietician at that time, so just after Jack’s 1st birthday in August of 2002, we were admitted to Carolinas Medical Center (CMC) in Charlotte.  All of Jack’s neurology care had to be taken over by the folks in Charlotte.  The diet is not typically used as a treatment for epilepsy because it is extremely hard to follow, has to be under a doctor’s care & a dietician, even shampoo, toothpaste, anything applied to the skin has to be looked at carefully to make sure there are no sugars.  The diet is 90% fat, think of the Atkins diet or what everyone is calling the keto diet now.  One of the big differences in those diets versus the ketogenic diet is all of Jack’s food had to weighed out in grams, very small grams & he had set times he had to eat.  He was allowed three meals & two snacks everyday.  During Jack’s week long admittance to the epilepsy ward at CMC, my husband & I stayed all day everyday learning the fundamentals of the diet.  The diet was gross!  One meal example would be 10 grams of mayonnaise, 5 grams of canned chicken, 5 grams of green beans.  I think the reason we were so successful with the diet is because Jack went from breast milk to the diet.  He wasn’t privy to the world of cakes, ice cream & candy. Meals had to be planned in advance. If we went to a restaurant, we packed a cooler with Jack’s meal & Diet Sprite. He never cried about his food, was extremely accepting.

During Jack’s run on the diet, the boys & I & my parents went on a vacation to the beach. Lee stayed behind because he had chickens. I went down not feeling 100%, something was just off. Well, I discovered I forgot Jack’s gram scale to weigh his food. We live 2 hours from the beach, so Lee drove down (bless his heart), spent the night & left to go back home. The day he left, I had to go to the ER due to the pain from what was determined to be food poisoning. The pills the ER doctor gave me, made me even worse & the pain was unbearable. That same night, I went back to a different ER. I went in my pajamas & robe & smelled like crap! While there, my daddy got to talking to someone in the lobby (like most Southern men do) about me. She told him I probably had a parasite from drinking bottled water, I was starting to get scared because I lived on bottled water! Thankfully, a parasite had not invaded my body but rather bad Chinese food! I got best thing ever made-morphine & a bag of fluids.

Lee had to come back to the beach the next day to take me home. He was tired of driving to the beach to see about my crazy self & was taking me home where I belonged! We laugh about this story so much. I ruined everyone’s vacation & Lee came to the beach twice & never even got to see the ocean!

Getting back to the story…thankfully, my parents once again stepped in to save the week with watching Coleman while we were confined to the hospital room learning something that would give us a break from a horrific time in our lives.  Coleman was just a little man, a little over two.  We were so consumed with caring for his brother for a solid year, but there was absolutely nothing we could do to prevent that.  We are just truly thankful we have people in our lives that are able to support us especially during times like those.

The good news is the diet was our miracle for a few years.  The moment Jack went into ketosis (when your body produces ketones), his seizures stopped!  What a true blessing, our prayers were answered!  For 2 1/2years, Jack did not have any seizures.  He met all of his milestones & developed normally.

Stay tuned for part 2 of the Young & the Rest-less (both of those words are correct)!  Rest-less we became & still are.

The boys before the storm, Christmas 2001. Coleman on top, Jack being wrestled by Coleman!

I love to “Wonder”

Welcome to my blog! I am the wife of a farmer & mama of three kids ages 17, 16, & 12. One with special needs.

I am a 42 year old mama of three kids:  Coleman 17, Jack 16, Ava 12.  I am also a wife, I am also tired.  Why tired you may ask?  Well…not only am I a busy mama, I am a business owner along with my husband Lee, of a farm market/homemade ice cream shop, but I am the mama of a child with Dravet Syndrome.  Jack age 16 has Dravet.  Most people have never heard of Dravet Syndrome-which I will refer to as DS or just Dravet in most cases, but thanks to social media, more & more individuals do know about the evil syndrome that has robbed our family of so much.  Yes, we have seen blessings from Jack’s illness from the community & meeting different friends afflicted with Dravet or similar diagnosis, but people really have no clue what we have to deal with on a daily basis.

For those that do not know what DS is, let me give a quick run down of the main characteristics-will elaborate later on the symptoms as I continue to blog.  The first symptom is seizures.  When Jack’s seizures first started, he was literally having 100’s A DAY!  The seizure types vary too.  DS reared it’s ugly head at the precious age of 6 month for Jack, it typically shows up prior to the child’s first birthday & often after a series of immunizations.  No, immunizations are not the enemy.  Often vaccines can cause a slight fever in kids & it is the fever that brings out Dravet.  Other side effects of DS are weakened immune system, severe behavior issues, speech impediment, bone issues, problems with eating, GI issues, sleep issues, & more.

I actually hate to write.  I despise sitting down at a computer to type thoughts-always have.  For some reason, I have felt drawn to start a blog about what we deal with daily.  There is so much to talk about with DS.  I will only touch on what gave me the nudge to be fully inspired to start this blog.

Last night, I took Coleman & Ava to see the movie Wonder.  Wonder was a great movie that I highly recommend ALL (including children) watch.  For those not familiar with Wonder, the story was about a little boy (Auggie) going to middle school for the first time (1st time for any type of school, was always homeschooled) born with severe facial deformities.  Not only did the movie showcase how Auggie felt going to school, but it told the story of Auggie’s older high school aged sister (Via).  This part of the movie is what gave me inspiration.

You see, Via felt ignored by her parents.  Her parents dealt with so many surgeries & health issues with Auggie that she never wanted to give her parents anything to worry about.  Much of her time was spent in her room or with her best friend, playing a low key role so that her parents could devote their time to their special son.  Via was normal health-wise, but missed out on spending time with her parents that kids so critically need.

What a strong comparison!  I often “wonder” if we are doing enough for our “normal” kids.  So much time is spent tending to Jack that I beat myself up for missing out on soccer games, goat shows, getting the opportunity to spoil the kids with something special, or just hanging out with them.  After watching Wonder, I asked myself, do Coleman & Ava feel neglected?  I’m sure they do but I realize my husband & I are doing all we physically can to be in all the directions we are needed.  Our hope is that Coleman & Ava will one day understand why we had to make some of the decisions we have & will make.

It’s so hard to create normalcy in a home that where so much chaos is created by one person.  That chaos is Jack.  Jack bounces off the walls, has severe sleep issues-he may go to sleep at 1am or 2am & wake at 6am & when he wakes, he is like a bull in a china shop!  All day long he calls my name, is completely & utterly obsessed with various things & beings.  Right now his obsession is Keith Urban.  When I say he plays Keith’s new song Female at least 100 times a day, that’s what I mean!  He blares the music, has zero reasoning skills, & the list goes on & on.

This may sound like a blog of complaining, it’s really not.  I do know that we have HUGE blessings.  I have a great support team from many,  my husband, parents, other family members, & friends that reach out to us & most importantly pray for each us.  BUT, I do love to wonder what three healthy children would feel like.  I am truly thankful for my sense humor because without it, there would be NO way I could of gotten through this journey thus far.

Thank you for reading my first blog!

First blog post

This is the post excerpt.

I’m the mother of three kids, one with a rare, catastrophic illness called Dravet Syndrome, wife of a farmer & business owner.  I decided to start a blog to let people know what a day & night (which are often the worst) is for us.  Raising kids is hard, but even harder when you have to face the challenges our family deals with on a daily basis.

I am going to be very open about this journey.  It is going to be heartbreaking for some of you to read, but that’s our life.  You will see that I am very much like you.  I have terrible days, sad days, & happy days.  Throughout all of this, I try my best to maintain a sense of humor & a smile.  Without laughter, the sea of darkness would of towed me under long ago.