The Climb

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

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

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

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

When Sleep IS the Enemy

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

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

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

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

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

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

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!