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.
When Jack entered the hospital December 13, 2021 for what we thought was going to be a simple operation for g-tube placement, our lives quickly got turned upside down within hours when Jack was placed on a ventilator. Lee & I waited for days praying for a rapid change in Jack’s condition, when that didn’t happen, we were lost. The days turned into weeks, the weeks turned into months. We never would of guessed what was supposed to be a three day tops ordeal end up being three months! Richmond County (the county we reside in case you’re not familiar with), is small. It’s kind of like the sitcom Cheers where everybody knows your name. Our little town of Ellerbe has only one stoplight & we love that! Our county is full of loving, caring friends that would do anything for a neighbor. Where Jack was in the hospital, it’s not so little. Located in Chapel Hill, NC, it’s a major city that is surrounded by other major city’s. After nearly two weeks of Jack being at the hospital, Lee & I became the welcoming committee for UNC for Richmond County residents. Honest to goodness, it seemed like everyday there was a post on Facebook asking for prayers for a fellow friend who was at UNC, we would run into their families in the halls, the elevator, bumped into them in the cafeteria while they were passing the time while sitting with a loved one. With most of them, we developed a connection-it was hard not to. I would look forward to running into a familiar face most days because things were so isolating for us. That was also around the time we developed Covid, after my five day quarantine, I went back & then Lee was out for weeks leaving me up there alone a lot of time because of the severity of the last Covid wave. This is when I really anticipated seeing local friends. It’s amazing how little a big town can really be sometimes. We could relate with one another, understand the hurt & pain, distract the other with small talk, & pray for one another. There were many connections made.
A friend gave me a book while Jack was hospitalized that I have become to rely on, Red Sea Rules. One of the “rules” says that you are exactly where God wants you to be. That quote has been a strong reminder to me since reading it of how true that statement is. I chant it often. As bad as Jack’s illness was, I was reminded of this during his tenure & thankful to have had that lesson brought to me. People were so kind & caring during his sickness. Sending him wheelbarrows full of cards, stuffed animals, games, gift cards, and so many people & groups helped us with expenses. Since being home, the generosity of friends has continued. Lee & I eat lunch out frequently since it’s our only time together without interruptions. When we go to pay, we find out our tab has been paid often times. We are truly blessed to live in such a fine community surrounded by wonderful family & friends. I always say it, but I would not want to live anywhere else. So a big thank you to all who supported us in prayer, love, & gifts throughout Jack’s journey.
Unfortunately, not all that go through the doors of the hospital return home. Without going into specific details, this has been a hard pill to swallow given the closeness of our relationships. Knowing the intense & critical struggle Jack went through & many local friends who went through similar fights, we were all rooting for one another, we felt each other’s pain, but Jack came out on the other side. I have been so saddened that all were not as fortunate as Jack. The moments I have of guilt are strong as I think about those that didn’t make it, but I also know that was the fate of each. It has been a year ago to the day as I write this blog that Jack was in the hospital with pneumonia, we were there almost two weeks & I thought that was tough. Jack was very hard to deal with then once he got over the worse part of the pneumonia. He didn’t want the IV’s, oxygen in, didn’t want to take his medications, didn’t want to be in the hospital. He tried on multiple occasions yanking everything out. It took being hard on him telling him if he didn’t do what they wanted, he would die. That helped the situation. As I reflect back over the last year & a half of Jack’s life, I honestly think he had been sick for that long & we didn’t know it. The lack of eating, drinking & life is a big indicator for me. After receiving months of antibiotics, we pray he is healed from that nasty pneumonia.
Jack’s current status is great! He is still eating excellent! My last Mother’s Day was spent in the hospital with him, this years was way different. Jack got me his traditional gift he gives me-Pepsi, popcorn & Reese Cups. When I indulge, this is it. Coleman came in for the day with flowers, & Ava blessed me with the sweetest words any Mother could ask for. Everyday is a blessing & I am grateful for each. Anytime Jack sneezes or coughs, we get worried. His left lung when we left the hospital back in March still had damage, so we are always worried about him getting sick again & not being able to fight it off with two healthy lungs. I’ve enjoyed being able to take Jack to the dentist willingly, out to eat & to stores. He is much more obliging than ever, needs no prodding any more. He will walk up to us & randomly say “I love you”. Now his sleep is still aggravating as all get-out & he can be, too, but we have full & overflowing hearts so it kind of evens out.
As stated in many other blogs, I despise writing, always have. It takes up too much time & I have never been one to like anything pertaining to school-type stuff (and blogging is school-type stuff to me). It takes me a long time to write, mainly because I don’t have a lot of extra time. My extra time right now goes to making chocolate covered strawberries, bills, sorting papers, & the kids. Our whole house is nothing but boxes & papers, I’m about to go insane. When I wrote the above paragraphs, things were good. Ever been feeling really good & happy & then something horrible happens & you are down & out. This is when the party ended: Thursday, May 11, a few of our employees were having a really bad day, so Ava & I took them to eat after work. Always thinking about Jack & his need for takeout, I asked him what he wanted & of course the list was a mile long. I ordered the food, brought it in & the restaurant didn’t send the right food. Jack got angry, ran to his room, slams down the dog gate, & slams his door, too. This is when our bubble burst. Nothing & I mean nothing can bring us down like behavioral outbursts do, these outbursts affect me more than they do Lee. We thought we had that licked, but we were proven wrong. All the other stuff that Jack goes through is dealable, violence is not. I am now back to feeling jumpy at every little noise thinking it’s Jack getting violent. Back to not being on a cloud. Back to being nervous about leaving the house & him in the care of another. When he gets like this, I want to be a crazy person, but I can’t. I want to tell him how foolish he is being over food, storm into his room & be the warden, but I can’t. I have to be meek & mild so that a war will not start, pet him for acting ridiculous, we all must remain calm to avoid further, possibly more violent attacks. Not only is this a worry, Jack is now wanting the feeding tube out. He is pitching a fit for it to come out, which is why I hesitated in getting it to start with. It has become a problem. We haven’t used it at all since he has been home other than flushing it daily, but it was there as a backup should Jack get into a bad cycle of not eat and/or drinking.
This blog did a whole Jekyll & Hyde situation! Jack ended up apologizing which he usually does. Is that commendable, yes, but to me it doesn’t matter because the behaviors always continue even though I know technically he can not help this due to his medical condition. Dravet is the disease of all the diseases in my opinion. Every single cell, mechanism, thought, every single aspect of their lives & the people that care for them are affected. It’s the cruelest of the cruel. I know of no other disorder that robs patients of not being able to go to events, be active, or get excited all because of seizures and/or behavioral issues. My hopes & dreams on taking a family vacation this fall were crushed in 30 seconds after his outburst. Life will go on. It will be hard as it has always been, but we each are used to it. Our prayers that smooth sailing would be in our favor for once were not yet answered. I will just chant harder, “I am right where God wants me to be”.
One of my favorite songs I learned during my youth group days inspired the title of this blog, here’s a link if you’d like to listen. https://youtu.be/w3Wa2L347fQ
There is no denying we have had an incredibly difficult few months. We lived an entire winter season in the hospital with Jack & most days were critical-not knowing if he would survive the various conditions he endured while there, all seeming too much for one body to handle. I’ve said for years that the scientists researching Dravet need to research why the Dravet patients are so resilient. I don’t know of any other people that are “normal” that could beat what our fella went through. In case you missed what he endured, here’s a quick briefing: collapsed lung, severe pneumonia, paraflu, three surgeries, crashing five times, tear in stomach, loss of tons of blood, kidney function problems, an enormous bed sore, blood clots galore all over his body, severely low blood pressure, withholding of his seizure medications for five days on accident, the weans for the sedation medications were very hard on him, & so, so much more. Because of your prayers & the mercy from our Lord & Savior, Jack was spared. Our lives have been forever changed by God’s mercy & what we witnessed Jack go through so many times. My heart breaks everyday imagining what he he went through. He doesn’t remember the worst of it thank goodness, but I surely do & always will. The isolation I experienced while there with Jack during the increased cases of Covid changed me. Hospital stays are rough, especially when you basically live there & have no comforts of home or a bed. I have not mentally recovered from Jack’s stay either. I’m having a hard time remembering things that I normally could recall such as names, tv shows, etc. I blame that on not sleeping there & not getting much at home either. I know I’m not alone with my experiences & many more have gone through much worse, just sharing my personal experience.
Getting back home has truly been the best medicine for Jack. He has flourished! Instantly, his walking improved upon returning home. I made sure he was made to do things like he used to do himself & walked all the time. His mood has been so pleasant & upbeat, he has been accepting of the feeding tube, he’s put on close to 35 pounds since his discharge, he talks all the time just like old Jack, moving constantly which has helped the bed sore tremendously, won’t stop eating or drinking & that is perfect! Although life for us has been hectic, it’s also been good. Hectic at work with strawberries coming off, Lee trying to get crops ready for spring & summer harvest, renovations at The Berry Patch, & me trying to manage the berry itself while still trying to get things settled at home. There’s so much I have to cook & do just for The Berry Patch this time of year, not mention trying to feed us. It’s been a little difficult finding my footing since being home. One reason is because of my actual foot. I’ve never been a sickly person thank goodness, but I have strange stuff to happen to me, lots of bone & muscle issues. I’ve had to get cortisone shots since I was a teenager because of various pains that X-rays have never been able to pickup. I get a shot or two & am good for a few years in that particular area, only for another spot to start up. I feel I have a high level pain tolerance, have taken one muscle relaxer in my life & swore I’d never take another one & haven’t! No pain pills either. Finally when the pain gets unbearable & affects my activities, I go see a doc. I’ve had a foot problem in the past, maybe seven years ago. The top of my foot ached all the time, I didn’t injure it at all-got a shot in the top & I was set for a while. During Jack’s unfortunate incarceration, the same foot started acting up with a vengeance-worse than ever. With me being on my feet about 15 hours a day now, I needed help. The first appointment was a few weeks ago, when I showed up to a deserted office & told the secretary I was there for an appointment, she looked at me like I was nude! Then she told me the doctor had to leave for the day, he was sick. I totally understand & was not a bit upset. They didn’t have an updated number for me. Not blaming anyone, things happen-particularly to us! Thankfully, I made two appointments with two different podiatrists. I kept the second one. The said my X-ray was great, but he’d give me a shot to help. Out of the dozens of shots I’ve had & I’ve had many in my hips, arms, & feet, this was the worst ever. The pain I experienced afterwards for hours on end was crazy. I guess it was so inflamed the shot agitated it. It’s been a few weeks now & my foot is good as new…for now.
Ava used to tickle me when she was younger, her stories always had multiple “and then’s” in them, in fact I wrote a blog entitled “And Then” once. Here is my “and then”.
Thursday, March 31, 2022 was an “and then” kind of day for us. Jack is having issues with sleeping. He has so much more energy now from feeling better, plus, I took him off his ADHD meds in the hospital, he obviously didn’t need it with being sedated. Not wanting to place him back on it because it causes lack of appetite, but Lord does he need it! He is wild, touching us constantly, as soon as he wakes in the morning & until he goes to bed, he is on me like white on rice, will not leave my side. Although this is better than the alternative that we could of dealt with, this is very difficult for me to deal with because I have zero alone time unless I’m in the shower. But in turn, it’s also hard to complain about considering what Jack has been through. It is an incredibly hard situation to live with. Getting involved in sports, groups, or even going to family’s houses to visit poses issues-seizures. Then it’s a major problem if he has one outside of our home since he’s so big & long, it is very difficult getting him in the vehicle while semi-conscious. There is also the high-risk of him fighting after seizures which he is very prone to do. Channeling this extra energy is an impossible task for someone with limitations such as Jack. He needs ADHD help but not sure what he could take that wouldn’t rob his appetite, cause more seizures, and/or instigate behavior problems as a side effect. Getting back to the “and then”, at 4:30am March 31, I knew that was going to be a bad day. Jack peed on the bed & that is an ordeal. He has so much bedding on his bed, one would think it was 30 degrees in our house at night. I had to strip the bed down before it soaked onto the mattress, get him changed, then he slept with us. And then the neighbors dogs woke us up around 8am barking (yes, still having problems with them). And then that afternoon I discovered on our online banking app that our actual business checking account had been hacked into. I have had debit card fraud before, but I didn’t know the actual checking account could be frauded with the creation of a fake check. We are having to close our business checking account thanks to a piece of trash, which is nothing but a pain in my rear end…especially times like this do I wish I were a man, Lee hasn’t had to do much at all with this ordeal since I am the accountant. Now am I not only in the process of closing that account & starting anew, we are switching banks. The team at Truist seems to not care to find out who did this. Someone made a check, very poorly may I add & it fell through the cracks. Same thing happened with a friend of mine, made out to the same people & designed the same exact way, makes me think it was someone local. I do care to find out & am opening a police investigation. There is not any protection for the consumer. What if that were to happen again in the next month or two or next year, we would have to go through the same process yet again. This is costly for us. We have two different styles of checks, one for payroll & taxes, one for paying vendors & bills. Plus, I’ve got to change all of our automatic payments. Annoyed to say the least & the bank is not even concerned with the person(s) that did this. No wonder fraud is occurring at an all-time high! We’ve been advised to call 911 to open an investigation..
On the following Monday, Jack had an appointment for his first gtube change at UNC. That went really smooth & he did great. From there, we wanted to visit with the PICU team that treated Jack & helped save his life on many occasions. The moment we walked through the doors, the familiar faces that treated Jack went crazy. One commented that they were literally just talking about Jack! A few were in tears, it was an extremely emotional moment for me, too. They could not believe the extreme progress Jack has made. The staff became a secondary family for us. As terrible as it was being in the hospital for such an extended period of time, both Jack & myself miss them all.
After gaining over 35 pounds since being home from the hospital, it seems so strange to us seeing his arms & legs with weight on them & a little belly. We have been delighted with Jack’s tremendous recovery. Over the years I have written about Jack’s violent side. We have all been on the receiving end of his attacks, been frightened on a daily basis of him, had to sleep with our doors locked, & put up with a very sassy-mouthed Jack. Since being home, we have not had to endure any of that. We are now able to sleep with our doors open again, he has been accepting of Teddy & interacting wonderfully with him, coming out of his room all day, he is able to eat with us without being threatening, & throughout the day, he spontaneously says “I love you”. Jack’s new attitude has been our other biggest blessing outside of him surviving such a medical crisis. It has been much like having a toddler doing all of his or her “firsts” & we love it! But, we are worn-out from his new active lifestyle. There are no moments other than when Jack is asleep that he spends alone. It really is stressful as I have so much to do for The Berry Patch at home when I get home from The Berry Patch, it really is stressful trying to make time for it all & keeping him occupied at the same time. There is not any time for Lee & myself, which I realize sounds a little selfish considering what Jack just went through but I am an honest person which is one thing no one will be able to deny about me. I feel like my life is in such chaos right now. Strawberry time is really a busy time for Lee & myself. As soon as we got home from the hospital, The Berry Patch took off running leaving us with zero time for anything else. Farmers taxes are due March 15-I find this strange considering farmers are of the busiest of occupations. We had to file an extension due to Jack’s unfortunate incarceration. In the meanwhile, Coleman’s bedroom has been taken over by receipts. They are separated thanks to Ava, but that’s as far as it goes. I can not work up the nerve to open the door to that bedroom, mainly because I don’t have time since Jack is so needy. My house never got straightened up with Lee living as a bachelor, now bills & papers are piled up on my desk & dining room table because I don’t have any checks to pay them with. I could just go lay down in the road & await a car! It has taken me over three weeks just to write this blog. Plus, Jack isn’t sleeping well either. It’s a Dravet thing. He doesn’t go to sleep until 1:30am (is like a live wire until then) & wakes up frequently & loudly throughout the early morning hours. At best, I am getting five hours of sleep a night.
While this is a lot to process for myself & there are other things going on that I haven’t written about, we have so much to be thankful for & that is what is keeping me afloat now. I love that we do not have any current stress of worrying about sickness or violence from Jack. It is such a weight lifted off my mind. Jack interacting with Ava has been one of the greatest things I could ever witness. They were very close when Ava was a little thing, but drifted apart as Jack’s behavior worsened. Now they are doing videos reviewing food & such & hanging out. Lee & I even have hopes on taking a trip this fall with the kids if Jack’s health & behavior are still doing well. During Jack’s check-up visit at UNC on the way out of the hospital, I experienced a very poignant moment with Jack. Out of the clear blue sky (fitting analogy in Tarheel land), he put his arm around me. Mama caught the moment on camera & I am so grateful. To me, this picture says it all, “Mama, we did it”!
We made it! Jack is finally getting to go home after nearly three months, five more days & he would have made the three month mark. I did not know what to expect with all the things that was wrong with Jack, but I knew when our complete faith was in the Lord, Jack would be okay. To recap all of his issues in case you’re new to my blogs:
After 100’s of labs, chest X-rays, consults with nearly every type of doctor, seizures, sleepless nights, blood clots all throughout his body, a vent, a self-extubation, four extubations & intubations, a trach, a GI bleed, taking the trach out, countless bags of blood & plasma, crazy lab work, a collapsed lung, going from complete tube feeds to now all regular food, a tremendous bed sore on his bum, staff medication mistakes causing issues, & stealing the hearts of all the staff, he has made it! The road was hard. It was particularly difficult due to Covid. Lee getting it so severely, I had it but not bad at all but I am still suffering with a the most terrible thing I can think of to smell-cigarettes! It is like living in the 80’s again! All day long I smell cigs as a result of Covid. As a child, I was tormented by cigarette smoke, have always hated it & complained about it (my parents automatically caused me to be a complainer every time they lit up). My Mama & her girlfriends or sisters would sit around the table smoking, drinking coffee & Cold Duck all hours of the night, it kilt me! Daddy would smoke with all the windows rolled up while I lay gasping for fresh air. Now I am plagued with my nemesis! The things we witnessed Jack go through are images we will never forget. The unanswered questions, doctors not knowing what was wrong with Jack on many occasions. doctors saying Jack would be vent dependent for the rest of his life, being torn away from my family, our dog Teddy, the sun, the moon , the stars. For days on end, I never went outside. I started to think rickets was in my future. The terrible food choices, the isolation because I didn’t want anyone coming in giving Jack Covid, the horrific sleep arrangements, the noise of the PICU, transferring to another hospital for rehab, it was all such a blur of time & also a long span of time in the same breath.
Now that Jack has graduated from rehab, he will be returning home. Up until today, he has been very kind & understanding about all that has taken place. Jack missed Christmas which he has always gone nuts over, hasn’t mentioned it once during his stay. He is forgetting a chunk of time. His Santa gifts are setup in his room for when he returns. Today with Mama & me, he has been antsy, sassy & irritable. He got angry with me about his feeding tube. This is what has caused such a delay in Jack’s care & the decline of his health. He got angry when I told him we were going to have to go to back to the main hospital to check his gtube. He demanded for it to come out. If you’ve read any of my blogs, y’all know Jack is difficult, is a picker & can be violent. If he doesn’t keep this tube, he will go through this same type of illness again & again until he can’t. I don’t know how we will make it with the gtube in place other than prayers. Jack is apt to pull it out completely. It is such a helpful tool to have with someone like Jack . If he gets in a non-eating cycle, we can tube feed him, hydrate him, meds go in it also so he doesn’t have to swallow pills any more & we can give the constipation meds in it . It is a win-win, but not in his eyes.
There are going to be more doctors appointments now & y’all know Jack doesn’t willingly go to appointments. As he gets stronger, it is also a worry of Lee’s & myself that he will get angrier over the new stuff & show-out. Now that we have beat one obstacle the size of a football field, we have another giant one to feat. This is one is going to take the same amount of faith & prayers. What sustained me & gave me strength on the countless nights I sat in Jack’s PICU room & cried my eyeballs out, was the prayers from family & friends. I wanted to lay down & die-truly! But I didn’t, nor did Jack. He hasn’t come this far to go back through it again. I’m asking for prayers once again from y’all for Jack to be accepting of his gtube & never be violent again. Thank you each that lifted us up through this whole ordeal, sent gifts, cards, monetary assistance, donating blood, offers to help at the Berry Patch, everything! We need our prayer warriors to continue to help us fight for Jack. Jack is really going to miss the luxuries of room service. There were times he would order five plates, those poor food & nutrition employees. This might be a ploy to get back to room service! You know, Hugh Hefner will do whatever it takes to get his way! 🤣🤣🤣 Thank you all! 💜💜💜
It’s been a while since I’ve blogged, mainly because I am employee of the hospitals & of Jack Berry. Now that Jack is awake & off sedation medications & off the vent, I work for him & UNC. You’d think I would have time to blog, read, nap, but no I do not nor does anyone else that stays with Jack. We are constantly changing his socks, bedding, gown, feeding him, boosting him up, rubbing feet with lotion, fetching this or that. It’s unbelievable. But, what an incredible whirlwind we have all been through over the last two months. From Jack being in critical care for nearly seven weeks, to Lee ending up in the hospital himself with Covid (Jack’s issues were NOT Covid), medication mistakes causing Jack to have tons of seizures, to learning the medical team thinking Jack would be vent dependent (which he isn’t PTL), three surgeries, tons of blood transfusions, to him taking his first steps last week, to him eating puréed foods & finally getting to drink fluids, to him learning to use his voice with the trach in, & so much in between. For those that don’t follow our updates on Facebook, the good news is that Jack was able to go to a regular floor room in the Children’s Hospital. We miss the staff tremendously from the PICU, after being there for over two months, they became like family. Jack’s room was a welcome zone for all once he learned how to use his voice. The staff had never heard Jack talk & I think they thought he could not, so when they heard him, all stopped in to chat! Jack has been without the vent for a week now which is amazing. He is not on any oxygen except while sleeping & that’s to keep the trach opening moist. Jack surely has come a long way. We never imagined he would be doing so well after being in such an acute condition, however, we have reached our boiling point with this UNC Healthcare!
When Jack was coming off of the sedation medications, he was in withdrawals from being on the sedation meds big time. The team quickly learned what I had been saying the whole time was correct. Jack is very sensitive to any changes & weans have to go extremely slow. They put him back on everything full-strength only to start the weaning process yet again extremely slow which was hell on both him & myself. That process is too difficult to describe in writing other than just simply saying it was pure hell. He didn’t sleep for days on end, like five days straight & starting having seizures which was expected during the wean. After he started settling down from the wean, seizures stopped & he got back to his baseline. A few days later, the seizures started back with a vengeance. I went home & left Lee in charge for two nights, when I returned to the hospital that day, Jack had a strange seizure. I had not seen him have that type of seizure in nearly 10 years. It was prolonged & lasted for like four hours. It bothered me. My nerves were tore all to pieces worried that now on top of everything else Jack had going on, his seizure medication regimen needed to be changed. I consulted with his neurologist & we devised a plan. As meds were given that night after the prolonged seizure, it didn’t sit right with me. A few hours later it hit me, I didn’t see the nurse give him one of his medications, Stiripentol. He’s been on this one for 10 years & it’s the only medication designed just for Dravet, it stopped the hours long seizures that we used to have to take Jack to the ER to help break him out of on a routine basis. When I questioned her about it, she said she had not given it the last three nights. Come to find out, it was the last five days & nights! An abrupt stop in any type of seizure medication can be disastrous, which it was.
A. I had consulted with his neurologist to change medications.
B. The team kept saying Jack was experiencing ICU delirium & gave medications to help assist with that. Medications that he was not previously on, on top of everything else he was already on.
C. I was about to change his medications unnecessarily which could of been very bad for Jack with even more side effects than he already has from current meds.
I know I was dubbed a “Karen” in the PICU. Not only did I cut up about withholding Jack’s seizure medication, I cut up about the PICU waiting room being closed. It was closed when Jack went in December 13 & remained that way. So “Karen” contacted the compliance officer of the hospital because I was tried of crying in a busy hallway with people looking at me & sitting on a hard tail wooden bench-none of us PICU parents had any privacy at all. It was open soon after my emails. I never thought I’d have to email her yet again complaining about the huge mistake in Jack not getting his seizure medications. Now an investigation has been opened. Within two days of Jack being in a regular room, Lee found yet another medication mistake. One of Jack’s meds was found under the bed undispensed from the previous day. This place is on my last nerve! After meeting with nurses, charge nurses & doctors about this medication foolishness, they look at us like we are the idiots. As you can imagine, we are ticked! Another email & more phone calls will be placed. Jack did have a seizure Saturday afternoon while Lee was here. Was it a result of not giving meds, I don’t know.
I am so tried of everything. I can’t focus on Jack’s health for having to stay on top of every move these medical people make. The carelessness they have exhibited for a person with a chronic, life-threatening condition has shocked me. A hospital is a place to heal, but they will also kill a body! Let this be a lesson to anyone that has a loved one in the hospital, don’t ever, ever let them not have someone there to advocate. There are so many hands involved in care for a patient that it is literally like a 13 year olds slumber party game of telephone. Rumors get started here about the patient & it won’t be no such thing. I could write about that as well but I won’t, y’all have heard enough griping.
Another thing we are having to fight is Jack’s visitors. When Jack was in the PICU, his visitors were unlimited. Now that he is on the regular floor, they are saying Jack can only have the same three visitors the whole time he is here. Lee has gone round & round with these nuts. This is communism. Don’t give me this Covid-safety crap either. I have no idea where the crowd of doctors, nurses, CNA’s, respiratory, OT, PT, cafeteria employees & etc go when they leave this hospital, hell, some are even treating Covid patients & treating Jack as well. They are not taking into account the length of time we have been here & how much attention Jack needs. Jack is liable to start yanking his g-tube or trach out at any moment like he tried to Saturday after his seizure. Lee, Mama, Jodie, Coleman, Lee’s aunt Vickie & myself were all taking turns in the PICU because it is a lot to be in a room 24 hours a day. You don’t get adequate sleep due to interruptions & an uncomfortable sleeping situation. We also have a child at home & a business. They surely don’t mind me going down to the cafeteria or Starbucks here with tons of people standing on top of one another & then coming back into the room. Again, just another example of how higher-ups are using Covid to divide our society & make even bigger problems. Best believe if their loved one was in the hospital, the rules would be broken. They didn’t come running when Jack had his last seizure. No one knew it but Lee who was in here with him, there is no type of equipment to alert the staff of a seizure. Jack needs 24/7 care & this is NOT the place to get it that’s for sure. I know I sound disgruntled, it’s because I am & have every right to be. Jack can’t make proper headway if he is having seizures. Do not let personnel tell you your loved one can’t have visitors, fight it-it is against the law! Show your tail!
In closing, I first want to thank you all for the cards, concerns, gifts for Jack, extra love, & the many, many prayers. Prayer has been what has brought us through this & the support of our family. Without both, I would of never have made it. There were multiple nights when Jack was crashing, that I had terrible, awful thoughts. I honestly wanted to vanish from this earth. Which is yet another example of what Covid has done to people. Those times were during the peak of Omnicron & I wouldn’t let anyone come in for fear of exposing Jack to Covid. Had Covid not been in existence, I could of had proper support from family & not felt so lonely & sad. If y’all can help us pray that the medical people will see just how necessary it is for Jack to have more than three visitors while he’s a patient on the regular floor, that Jack can get decannulated (trach out), & Jack can get stronger in the next two weeks to go home instead of rehab. Rehab has been mentioned, but Jack does not want to go. Ideally, as long as he can walk to the bathroom, I would rather bring him home & have people come in to work with him. We are tired, he is tired of all this stuff & wants to get back to his life. Ava & Teddy are broken-hearted. No to mention Lee & I never see each other. Today, we met at the gas station in Southern Pines for ten minutes as he was headed home & I was headed to the hospital just for a quick look at one another. This has honestly been the hardest road I’ve ever hoed. Jack is headed towards being a hospital patient for his third month. Help us pray that he gets to go home safely before he hits that milestone. Thank you all again! 💜💜💜
I have embarked on the hardest days of my life since December 2021 & it is now February 1, 2022. Being the main caretaker for Jack, I have seen him during all of his health crises, this current one being the most difficult of all. Through all of the drops in oxygen, blood pressure, heart rates, the self-extubation, multiple intubations & extubations throughout December & January, which all made me want to rip my heart out, these moments right here right now at the hospital with Jack have proven to be the most difficult. Watching his computer screen monitor for his oxygen level has given me a permanent crick in my neck. I watch it like someone’s life depends on it & it does, thinking of how 100 is perfect for oxygen saturation & 99, 98, 97, 96 is great, but only a few more points to go & Jack gets into dangerous territory. Two days ago he had a particularly bad day for oxygen. He hovered around 90, 91 all day long. As he got something called a cough-assist treatment, it aggravated his cough something awful. He couldn’t stop coughing & had so many secretions. His oxygen dropped down to 86 as respiratory was in here suctioning him out, then it was 76. Jack got scared & reached out for me in tears. They got him stable quickly but it was so scary.
Most of you know Lee contracted Covid while home from a friend. He hasn’t been able to be at the hospital with us in over three weeks, Jack’s care has been mainly on me. Mama came up for a few days to keep me company which I desperately needed, Jodie & Coleman have stayed some nights as well. I absolutely hate putting stress on other people so I despise asking for help, for their benefit, not mine & to limit Jack’s Covid exposure as well. People want to help but uprooting their lives isn’t fair. While Jack was intubated, I made the statement that when he woke up, it was going to be on & boy has it ever been. The sleep deprivation was real for me when Jack was sedated because the nurses & respiratory staff were in the room constantly making noise & talking, which was fine by the way, they were working on saving our sons life, but I was tired nonetheless. When Jack was first admitted to UNC, he had a great big spacious room. After about a month, they tell us we have to move to another room on the same unit. What they eluded from the story was the room was a baby room, literally. It was a room for a crib, but they decided to put an almost six foot tall guy in there. The foot of the bed was only inches from the door. Every time someone walked by, they bumped the bed. Some of y’all saw the video of Mama trying to get into the air mattress on Facebook, if not I’ll post below-hilarious! That room was such a pain in the you-know-what! Plus, some idiot, I know it was a man, designed the room that when you walk in, the automatic sink would run every.single.time someone came in or out! That designer needs to be horse-whipped!
A week ago they moved us to a larger room on the same unit. There are 20 rooms in the PICU, we’ve had three so far. After getting to the new room, the team started weaning Jack down from his final sedation medication & to call it rough would be an understatement. He fidgeted something awful, moved from side to side every 10 seconds. Wanted the blankets on & literally 30 seconds later, wanted them off & so-on. Kicked all the pillows off the bed when the nurses turned him, only to want them back on after he did it. This team has never dealt with a Dravet patient before, the wean was too fast for Jack’s body. They have no idea about the sensitivities DS patients have. Then Jack started having seizures. He has not had a seizure in six months. Jack is not addicted to the sedation meds they had him on, he was just on them for so long that his body got use to having them. He wouldn’t know what a sedation medication was if they asked him about it. The problems he was having was due to withdrawals from the sedation meds. The symptoms Jack had was agitation, delirium, he did not sleep for four straight days/nights-zilch, fast heart rate, high blood pressure, constant moving, seizures, increased coughing, fever, & excess secretions. It was truly a nightmare. The team was concerned with me because I had been here so long & it was so difficult to watch Jack like that, plus it was physically exhausting as he wanted me bedside at all times. I know Jack has been scared & still is. The poor child had no idea why he was going to the hospital any way. The day he left home in the ambulance December 13, we told him we were worried about him not eating & that’s why he was there. After the transfer from our local hospital to UNC where we are now, he went into respiratory distress the moment he arrived & was quickly intubated. So now he has two devices in him, the g-tube in his belly & now a trach in his neck to assist with breathing. The trach is the absolute hardest pill for Jack & myself to swallow. It has taken his voice. My heart breaks every single time I look at Facebook memories of Jack talking, singing, kidding around. It totally shatters. I have been such a mess since he has gotten the trach. He can’t wrap his head around why he can’t speak, why he can’t get out of bed, why he can’t eat & drink, why people keep coming in his room & shoving a tube down his throat saying “good cough, buddy”. We hear this dozens of times a day. The coughing is still there, the mucous is still there. Will this crap ever stop producing! I simply do not understand where it all is coming from. The staff was concerned about me because I hadn’t left. I only leaving to go to the bathroom, I couldn’t leave Jack. He looked for me every second of time, even when I was there. Lee would try to come up to help but Covid has done a number on him & he was too tired to come. This is work being here with Jack. Again, I sure hope the creator of this whole entire man-made, division-causing evilness is brought to justice soon. If it weren’t for the virus man-created, I could have plenty of help with Jack. Y’all know Jack is no ordinary patient. He requires attention at all times, especially now with these devices in him.
I get very emotional all throughout the day at almost anything. When Jack wants to hold my hand, I know it’s because he is scared. He never has wanted to do that before. I cry & cry at that sweet gesture. As Jack is moving into a lesser state of withdrawals, we are working on trying to get his body adjusted to not being on the ventilator. He has to do what they call trach collar trials. This is where is he only hooked up to oxygen & he is breathing on his own. He later gets hooked back up to the vent so he won’t wear his lungs down & get overly tired which he is done several times. And while this crisis has afforded me the luxury of hanging out with Coleman, I have missed Ava tremendously. I know she understands the importance of me being at the hospital, but it doesn’t make it any easier. Children need their Mama & Daddy & to be without your Mama for an extended period of time is depressing to her I know, it sure is for me with my Mama. There were two things I could count on doing every single night when I lived at home-calling my Aunt Dot & calling my Mama. We discussed politics, this Covid fiasco, what Shawn looked like on QVC, silly things. Since being a live-in hospital caretaker, I have stopped that because Jack is so needy. One thing about isolation is, the longer you are isolated, the less you want to become unisolated. It’s really hard for me to find the energy to talk to people on the phone. I stay such a mess. Jack also has a bed sore on his backside that looked terrible, but it is healing & improving since changing his actual bed to a heated sand bed that moves & shakes all the time. The bed itself is so loud but I appreciate the noise, it’s kind of like white noise to drown out the hallway racket which is crazy loud, they sound like they are honky-tonking all night & early morning long. I swear the staff sounds like they have been partying with Toby Keith at a dive bar slamming beers down & hooping & hollering until shift change at 7am! Then to watch Jack in a diaper has been mind-blowing to me as well. Tears me up every time he is changed.
With all of that being said, Jack is improving in very small measures. At the moment, he is tolerating the trach & g-tube with amazing grace, especially to not understand it all, have developmental delays, & be tired from laying in a bed for nearly two months. There are moments that I will never forget in this hospital. The night Jack received four units of blood & four bags of plasma with the staff working emergently on him, all the nights of emergent intubations, the scary moments of destat’s of oxygen, the moments of Jack crying in fear, the moments of seeing your own children cry over their sibling, watching my own Mama walk out in pure tears after staying with Jack alone overnight. I pray these etched memories are replaced with new, beloved memories of Jack’s accomplishments. So many are praying for Jack & we are ever so thankful, our prayer requests for Jack at this time are for his lungs to get stronger so he can come off the vent permanently, that Jack can soon start eating & drinking in order to get his body healthier & stronger in order to beat this thing, & for the seizures to stop. Jack can not go to rehab (which will be required) in-house at Chapel Hill unless he is off the vent. Y’all help us pray that Jack can transition off the vent & keep his oxygen levels up & secretions low. You each have made a difference in our lives through concern, acts of kindness & prayers. We thank you & thank God for getting us this far. 💜💜💜
Fortunately, I’ve never been held captive by a psychopath unless you count Lee 🤣 , but I am beginning to understand what that might feel like for a person. All of mine & Jack’s days & nights are the same. He lies in that bed day & night, restrained now due to extubating himself the other morning. He is mostly sedated, waking several times an hour holding his hands up wanting me to untie him then back to sleep. I imagine this is what it must be like for someone that has been kidnapped. Not knowing what time it is, what day of the week it is (even I am struggling with that), not knowing what happened, & maybe even wondering if he will lay in that bed forever. Jack has so many different people in & out everyday of his room, I know he has got to be in a chronic state of questioning who are all these people. None are ever the same. He is responsive to questions by shaking his head yes or no. I try explaining things to him but I know he is confused. He has a look on his face that tells me that. Every single day Jack has been in the hospital, it has been a day of events. One thing gets corrected, then something else breaks. The hospital is holding me captive, too. Due to the uprise in Covid & Jack’s lung condition, we are keeping visitors to a minimum, but I have to wonder if that should even matter when the CDC has changed the quarantine requirements, plus, medical people can come to work if they test positive & have been vaccinated. This Covid has ruint everything & especially has ruined people’s mental health & those that are in the hospital suffering from lack of human touch & relationships. I can not wait for the day that the creator(s) & the person(s) of this mess is brought to justice. A few days ago, I decided to get a room at the SECU House which is referral housing for caregivers of patients. I finally relented control which is so very hard for me to do being that I have taken care of Jack for 20 years each & everyday. It was a necessity but I feel extreme guilt in doing so. I worry about him waking up & not seeing a familiar face. I worry that he won’t be cared for & watched over like I would do. But there is absolutely no way I could function staying in the room with Jack for consecutive days because it stays so noisy & busy in not only the room, but right in front of his room as well. I have never stayed alone anywhere. I don’t like it. The room is nice enough, but it’s empty just like my soul feels. There’s nothing but a bed, tv & bathroom which is all a person needs, but it is a struggle for me to find comfort there when my child is suffering three miles down the road from me. No sleep that I get is restful, much like Jack’s. All my dreams revolve around him & they are all weird, taunting nightmares.
If things go as planned, Jack will be having two procedures Wednesday. One to place his g-tube, the other is to place a trach to help wean him from the vent successfully since he has failed doing so three times. Dubbed Houdini in the PICU, Jack extubated himself completely a few nights ago. Of course this was my first night spent away from him & I immediately felt like a complete louse for leaving. He then had to go through the whole intubation for a fifth time in a little less than a month. Had I been there, I could of prevented that. Pulmonary took some samples from Jack’s lungs a few days ago, the samples have to have time to grow so the doctors can see what they are dealing with which takes a couple of days. I am still praying that the Lord will grant us with a miracle & the pulmonary team will come back & say “we’ve found the issue in Jack’s lungs & he will not have to have a trach”. The g-tube is going to be a hard enough acceptance with Jack, the trach is going to be a whole other mountain to climb.
It’s been a month now. When I say that out loud, it truly blows my mind. As we all know there are only 12 months in a year & Jack has been a patient in the hospital for a whole month, that seems wild to me. It has flown by but it hasn’t. This is our home for now. It makes me question everything I’ve done for Jack’s care. Should I have done things differently when Jack was a patient back in May with pneumonia? It really makes me physically sick to see him like this & what all he has had to endure. I’m nervous about the trach procedure more than anything. I’ve seen Jack struggle to breathe too many times now to know he’s not able to make it without it. Watching him be intubated in emergency situations kills me & I’ve seen it all four times, missed the fifth one due to me being away that first night. Jack’s developmental delays makes this all even worse. His understanding when he finally gets coherent will be very difficult on him & us all. We are still trying to find out why he’s bleeding, where it’s coming from & why does his hemoglobin keep dropping. It’s just a lot & not anything I ever thought Jack would have to go through.
I’ve been reduced to looking at my phone nearly all day. I can’t concentrate enough to read, so your Facebook posts keep me from going crazy, somewhat. I’ve started watching the Real Housewives of Miami thanks to a friends suggestion but I am not keen on watching a show on something the size of a deck of cards. If I didn’t have a double chin before, one is certainly growing now & not from this awful food either, from bending my head over! The food started out pretty good, but I guess since the new variant of Covid has reared, a lot are out of work. This mess is the pits now. Throwing this term back back to the 80’s, I mean like totally gag me with a spoon!
People say DoorDash or GrubHub, but they too & the restaurants are short-staffed so they are really slow. I eat when Jack is comfortable, stable & I have met with everyone that needs to be met with. And too, paying $30 for a meal is crazy especially if it’s not fit to eat either! Y’all know food is a major part of my life, so I’m suffering lol. Honestly, I don’t have much of an appetite which is a good thing up here.
As I sit here in my empty room completing this writing, my heart is aching for Jack & for the family at home & Teddy. I miss everyone, miss our business which I haven’t been to in weeks, & miss life. I’m not mentally prepared for Jack’s upcoming lifestyle changes, but that’s what life does, throws you curveballs at any given moment. We will adjust somehow. Again if anyone wants to know what they can do for us, give blood! Jack has needed four transfusions during this stay, supply’s are very low, the hospitals are all full & many people need blood. Y’all continue praying for Jack to get stronger & for answers to be found.
It’s been 16 days now since Jack entered the doors of UNC Hospital, 16 days since entering the pediatric intensive care unit, & 16 days of hell. What a journey we all have been on. Someone from the family has been with Jack at all times, either Lee, Coleman or myself which has been very taxing on us all, even family at home unable to be here, even Teddy our beloved most precious Labradoodle (though Lee would beg to differ). Hospital life is beyond rough for any patient or anyone staying with the patient, but ICU life on the patient & caregiver is beyond. Poor Jack has been hooked up to everything this hospital has! From an EEG which he still has lots of glue in his hair, to EKG’s, a vent, you name it, he’s had it or has it. What do all these machines have in common, they make a racket. At home, I have never understood the importance of microwaves, coffeemakers, air fryers, or ovens making a noise when pressing the buttons to turn on or set the time. Why does everything have to beep? I understand the beeps if something is wrong or the item is done, but beeping to set the timer or turn on, that’s foolish! Noise, noise, noise was the closet thing that got me feeling like it might be Christmas (you know, The Grinch’s story, he hated the noise of Christmas in Whoville). Jack had something called ICU delirium after the brief time he was extubated, I think I do too! One of the attributing factors of this is noise. Although Jack was sedated the whole time, it wasn’t a good sleep, not a restful sleep. Once we would get settled for the night, something would start dinging. People are in his room day & night. When he first got here & up until a few days ago, they were working on Jack about 21 hours a day total. In all seriousness though, what Jack is going through & has gone through has been tough to witness as parents. He was confused & talking pure gibberish. That is almost as bad as seeing him on the vent. This paragraph was typed when Jack came off the vent, in a turn of events the next day, he had to be placed on the vent for a third time due to his lung collapsing yet again.
We are tired & I can not imagine how tired Jack is. The noise from the hall I can’t even describe other than saying 2am is just like 2pm in an ICU. Time makes no difference to anyone here. They talk loud in the hall disturbing any rest you may be trying to get. I get it, I’m not complaining because what they are doing is working tirelessly saving lives, I’m just explaining what all this is doing to ICU patients & how it can affect them mentally & caregivers, too. Bath’s are given at like 4am, sheets changed at 3am, I mean it’s wild folks & everything goes wrong in the wee hours of the morning too no matter where you are with a sick patient. As soon as we drift off, something is going off in the room. Of course we wake up in heart attack mode thinking the worse but most often it is the IV pump. This is an example of what we hear constantly. Also, his room is near the life-flight helicopter pad that has been working overtime!
The things that Jack’s body is going through makes me want to die, truly. It is so hard watching him go through it all. When they intubated him the third time last night, Lee witnessed it all. I left to go home & rest, hadn’t been home two hours & Lee calls & said things aren’t looking good, they couldn’t get his oxygen up. It was up & down until I got there. When I arrived, it was down low. Witnessing Jack’s oxygen plummeting while on the vent & while on full force vent settings made us all lose it. Coleman came to support Lee until I got there-thankful Coleman moved into the area back in August, he’s been a huge help. I told Coleman after all the times Jack has literally beat our tails & all that trauma he put us through, he’s not even strong enough to cough now. What I wouldn’t give to take his place. The trauma we have seen his body go through are images none of us will ever forget.
ICU life is usually meant to be a few days, maybe a week, not the length Jack has been in. There is no where comfortable to be. In Jack’s room, there is a recliner & a chair that sits up straight. The recliner hits the arm at a terrible angle that makes my hands fall asleep. Then Coleman brought a blow-up bed for us to sleep on that is better than the recliner in some ways as far as stretching out my long body but it gets old & it’s not very supportive. There is nothing to do here but sit, lay, eat, & sleep for 20 minutes if you’re lucky or a man. As I’ve said before, men are blessed with the ability to sleep anywhere, any how. Lee even slept through a Keith Urban concert! Lee & I look like a couple of strung-out crackheads laid up in this room.
Another downside of this whole hospitalization is the bathroom ordeal. In this unit, there are no individual restrooms. We have to go out of the locked doors in one of the four public restrooms which is fine, except they stay clogged up all the time. On Christmas night while I was here, all four were stopped up & out of order for two days! We had to go downstairs to use the bathroom every time & I was skeered. No one was around with it being a holiday, it was late, I just knew a crazy person was lurking nearby to murder me! There is zero privacy here. What else is awful is having to sleep in regular clothes. There is always someone coming in that I would hate for them to see my raggedy pj’s! Sleeping in a bra is the pits. As soon as you roll on your side, your boob falls out!
What Lee & I miss most though, is being at home. Although our home life was stressful, it was home. Our bed is pure heaven thanks to our memory foam mattress from Bobby’s Furniture. I miss watching our recordings of Below Deck & the Beverly Hillbillies. I miss hanging out with Teddy & watching the funny things he does. I most miss hanging with Ava. She has really suffered with not having both parents there or only one. She’s 16 but her home life has been majorly disrupted. She can’t go & do fun things with friends because she is having to tend to The Berry Patch (our business) or be home with Teddy. These are her prime years & she’s having to suffer through them like a 46 year old me. She & Coleman became adults before they had to. Learned to deal with things before they were supposed to & luckily most things they have dealt with, most adults will never have to. We miss bathing everyday, clean clothes, having an opportunity to sit in a comfortable seat. We are also very dehydrated. Anytime we want water or ice, we have to ask the nurse which I think that’s just awful. I drink tons of water at home but here I do not. I don’t want to bother a nurse to keep me hydrated. They have turned the PICU waiting room into a junk room. I can’t tell you how upsetting this is. It has recliners in it & a small kitchenette for parents to get ice, water, access to a microwave. A nice place to go rest while your child is sleeping during the night & safe but you wouldn’t have to hear everything in the world going off in not only Jack’s room but all others. That is a huge disservice to all parents & caregivers for anyone in the PICU. I will be writing an anonymous letter when Jack gets out…I don’t want them to know who we are in case he has to come back.
The positives of being here & all these are stretches, are not having to decide what we are going to eat. I haven’t cooked but once in 16 days. We go to the food & the cafeteria has various selections. We are able to leave now that Jack is sedated whereas before back in May I couldn’t because Jack wasn’t sedated & tried to pull off everything he had on him. So I’m immensely grateful to be able to leave the room this time around but surely hate it’s under these circumstances. Everyone here is so kind & that makes everything easier. I’ve seen a violinist playing Christmas music in the lobby, the gift shops are terrific, food is great. It’s like being at a Disney resort almost but is actually the worse vacation of your life! Disney too because they don’t have Pepsi (I’m hung up on that)! They do have a Pepsi machine at the parking deck, but I would die of thirst before I got there! People say just ask for a cup of ice, no! If you are a true Pepsi drinker, you know the form it is in & the coolness of the drink is what makes it. I only like canned Pepsi’s & they have to be just the right temp or they are not fit to drink. This is a whole other blog-I have a sickness to only want to drink 1/2 a can a day if that. If it’s not worth my calories, it won’t touch my lips! I was raised on Pepsi, turnips, cucumbers, Nabs, & hoop cheese. Message me if you don’t know what the last two are, but Nabs aren’t fit to eat any more in my opinion, they changed the recipe.
Jack’s latest status is trying to build up his collapsed left lung, working on building his hemoglobin up-he’s had two blood transfusions while here, & to continue fighting. We haven’t even dealt with the permanent feeding tube placement, hopefully that can come soon. Your messages, concerns, thoughts, reaching out to help at The Berry Patch, but most of all your prayers have been a huge blessing to us. Keep them coming as Jack is going to need them in a big way. Pray that his lung will not collapse again & he can get stronger to support himself to cough up that mucous. Pray that the ICU delirium will not come back. Pray that he will accept the feeding tube without any negativity. And lastly, pray for our whole family to be calm, reassured in our faith that God has got this, & for rest. Love to each of you. 💜💜💜
How is it possible to be a faithful Christian when life is so very difficult is a question I ask myself often. I’ve asked myself a billion times in Jack’s 20 years on earth, how is it that so many people carry on wonderful lives of travel, happiness, joy, health, carefree living & the most important gift one can have, peace. I don’t understand why we aren’t able to obtain peace, I mean I feel like we are good people, I am mean (mainly because of a lack of sleep), but we don’t do harmful things to anyone & we try to help anyone that needs it. I’m not even slightly jealous of friends that hangout with other friends, go on nice trips, ride boats on the lake every beautiful weekend in the summer or even those that work only five days a week. All of that would be nice, it’s nothing I really care about at this point in my life, all I want is a healthy child & peace. Why Jack’s life has to be so full of suffering is beyond my thinking ability. It really does seem so unfair & unjust that Jack has to suffer everyday.
What does having an unwell child do to a person? I can’t speak for all, but I know there are commonalities, especially in the Dravet world. There is a huge adjustment in one of the most important daily routines of life-sleep. When Jack first started having seizures, he was only 6 months old. Coleman was 21 months old, Lee was a busy farmer & I was a 26 year old stay at home Mama. Though young, I was already sleep deprived from nursing Jack, then keeping up with a very energetic Coleman, then Jack began having seizures all day & night long which continued for many, many years. Then we had Ava & the sleep deprivation started all over. I wouldn’t take anything for those years, they are actually what helps me get through the lack of sleep now-they trained me! How I wish I liked coffee, can’t stand the taste of it at all, but I sure do need it. Can’t drink energy drinks either, so I am an au-naturale sleep-deprived fool!
Another thing that has changed in myself is a lack of empathy. People can get so bent out of shape about little things & I am continuously saying I wish I had only that to worry with. Admittedly, I have turned into a callous person. I don’t mean to be & I’m not sure when it exactly happened, just a buildup over time due to trauma. Is it a fight or flight response, I’m sure it is, I’m not so cold that I don’t care about people, I have a great big heart for those going through very difficult times be it medical or personal. It takes something major to get me to cry, not that I ever really cried to start with & I’m glad, the only makeup I wear is mascara & it would be a shame to ruin that as it is the only thing that makes my eyes appear open! I think most things are foolish that people carry on about, but when someone told me I had a dark shadow above my upper lip (aka a mustache)-that cut! The fun has been zapped right out of me. There’s not one desire I have to do anything extracurricular except when I was playing softball this fall & my heart wasn’t in it this time as it usually is. Any of the fun that is seen on my videos with Mama is pure force. If I’m out, it’s because I am forcing myself to not yet go home to my unhealthy son. Is this selfish? Yes it is, is it cold, yes it is. Is it needed, yes it is. I know if I go home directly from work, I will continue to work for Jack. Fetching this or that, him worrying me, being his one & only. I am straight up the only person Jack wants from the time I walk in the door until he goes to sleep at 1 or 2am. Jack’s disorder has also changed my whole love of doing things I once found joy in. Decorating our home for each season, now it’s summer pillows on the futon almost year-round & a Christmas tree only at best. Shopping, don’t care a thing about it, although I have to a lot of it for The Berry Patch, I find no pleasure in shopping for me. I use to sweep our porch several times a week, now it’s about twice a year. I used to love reading, wore out our local library, but I couldn’t tell you the last time I partook in reading for myself. The energy nor joy is there any longer. Some of the changes were rapid, others developed as Jack’s disorder worsened.
Self-care is yet another downfall of the special needs parent. My love for exercise was true! I was watching 1000lb Sisters the other night & the sisters brother Chris is trying to lose weight for gastric bypass so he is starting to exercise. The trainer he is working with asked him if he liked exercising, he said “No, they don’t nobody like exercising & if they do, they already skinny!” How right Chris was (I talk like him too)! As a youngster, I would wake up at the butt-crack of dawn on Saturday mornings to exercise with Richard Simmons, Jane Fonda & any other person I could find. When I took gymnastics, I stayed for the ladies workout after I had already whirled my way through the studio for two hours for my lessons. Then I got into walking & I could not miss my walks for nothing, until I did. Being healthy was always a top priority for me & now it is not because I don’t have the time nor desire. Life happened. It happened too fast, too crazy, & too plain brutal for us. Personal health nosedives when taking care of a loved one.
One of the most scary changes has been my memory. Sometimes I feel like I have early onset dementia & I am being totally serious. The things I forget are worrisome & the things I remember like so & so wanted a bushel of Dixie Lee peas or this person wanted a box of canning tomatoes, but it’s also comforting to know I may not have dementia if I can remember things like that. I do forget things like picking up Jack’s prescriptions of all things or calling the doctor. Inadequate sleep changes your way of thinking, reaction times, everything. Every relationship you had and/or have will falter including the ones in your home as a result of having a special needs child. Many will think you aren’t doing enough, some will think you’re too much of a helicopter parent, others just don’t care to be associated with you when they once were very active in your life. You get forgotten about, people no longer ask you to be a part of things & that’s understandable when we never could do things because of Jack’s condition. An old friend used to call me smiley a few years ago, can you believe that! There doesn’t seem to be much of that going on any more. I feel guilty doing anything for myself when Jack isn’t doing well, including laughing.
The type of stress we are under & Jack’s little body is in, is unbelievable. With him being in starvation mode currently, he is weak & depleted. Two weeks ago I started him on a medication that was supposed to help stimulate his appetite, but we ran into an issue that I am unable to say 100% what happened. He was lethargic upon waking that morning but not unusual when he is in a bad cycle. New med was given & he slept all day on & off. He had planned on going hunting with Lee that day but when Lee came to get him, he was too tired to go. Jack ended up calling me 30 minutes later demanding for Lee to come back home & get him, which he did. After getting to their destination, Jack slept the whole time. Lee had to carry Jack in the house because he wouldn’t wake up. Blaming this on the new medication, I swore I wouldn’t give this to him again-much like all the other stimulates, they all put him in a catatonic state. We are honestly between a rock & a hard place. I have never seen anything like this. I was by his side from 8pm-1pm into the next day, even slept with him. Jack developed a cough in his sleep shortly after I fed him some dumplings friend Nora Hudson made for him. He got strangled on them & I thought that was causing the cough. Later on he told me he didn’t feel good & Jack never complains. My first thought was he has developed pneumonia. It comes on quick with Jack & there has never been any warning that he had it. Jack is more prone to it due to several factors-epilepsy (aspirating), lack of moving around, & getting choked easily. I dug around & found an antibiotic & got it in him & his doctor called in one that morning. He slept & slept, into the late afternoon. When he was awake, he was in & out. Requested food but would only eat tiny bits & then start coughing. After a full 24 hours of antibiotics, he was better, but coughing up lots of phlegm. So very thankful for his doctor that listens & is so helpful. He did complete eating a whole bowl of soup after that rough 24 hour period. Honestly, I never know from day to day if he will end up in the hospital or not.
The trials Jack are going through currently are all because of Dravet & I have to wonder if it is from my pleas with God. Back when Jack’s behavior was so violent & we lived every moment in fear of him, I pled with God to take that away from him, the evilness that lived inside of him would rear its ugly head almost every single day. Our prayers were answered after several years, but with that came different types of worry & scariness-health changes & some violent streaks are still within but no where near what we were going through. We were & are in a damned if you do, damned if you don’t situation. The clinginess Jack exhibits towards me is exhausting. Moments alone to myself are a rarity. Moments spent with Lee alone are not to be had. We are on totally opposite sleep schedules. If I want to spend time with anyone including Lee & Ava, we have to do it after work at a store or a restaurant because if I go home, I am Jack’s. It is unhealthy to be someone else’s possession but I am & there is nothing we can do about it. He has no interest in anyone else in the house spending time with him. And not to mention the impact of having a special needs child with other children, they suffer. They are often pushed to the side & it seems to them they have been forgotten about.
I got a new car (new to me) two weeks ago & I have yet to open the door to it. We’ve been looking for a while now & had to get this one shipped in & also had to buy it before looking at it. When I woke the morning Lee got it, he said go look outside. I did, I wasn’t even excited. Haven’t driven it, nothing. I’m actually afraid to drive it with my luck. After hitting a dog a few weeks ago, I have extensive damage to the front of my Yukon, done on the same day Lee had it detailed-it was just about to be sold too. Berry luck is unlike any other luck in this world-not good! We have a new, young driver on our insurance now & I hit a deer last year, Lee hit one the previous year, & he reported some hail damage last year. We are probably going to get dropped from our insurance we’ve been told. Great! What the heck is insurance for? And now Ava has been involved in an accident. Someone ran a stop sign & her car got totaled, though not her fault & the person didn’t stop that made the error. We just got her another car yesterday. This will make three newish cars purchased in a month! Who other than a Berry does that! Not only all of this, but someone tried to steal Lee’s tractors (yes tractors with an s) on Thanksgiving night. I’m so sick of people. A few years ago, Lee hit a bear, now who else in our county can say that?
Friends of mine/customers step-daughter was injured while she was running when a car struck her. She has been in the hospital for over two months now & has a long recovery ahead of her. Our customers husband said it best, a parent is no happier than their saddest child. That statement certainly holds true for us & if you are a parent, you know those words are 100% factual. If y’all can continue to keep Jack & us in your prayers a little more extra, we would surely appreciate that. This too shall pass is a favorite saying of mine, I surely pray that this feeling that we are in & Jack’s mode of health changes all for the better very soon. The single most valuable lesson I have learned with having a special needs child is how very precious peace is. Having a sick child makes you realize that nothing materialistic, any feuding you have in your life or drama are of any relevance at all. Peace is what I crave the most & I can’t obtain it. I need prayers to help me accept this life. Rationale brain knows that I have done every single thing possible to care for Jack, non-rationale brain says I haven’t done enough & can do more. I am haunted by the fact that Jack is not doing well. I know I have done for Jack all that he will allow. I still keep trying, aiming for other alternatives & treatments, but am exhausted both mentally & physically. If I were a lady of the 90’s & newspaper ads were still a thing, I would run a newspaper ad saying:
Married woman, late 40’s seeks peace from a crazy, hectic, sleepless life. Any Sugar Daddy’s available???If you are willing to enjoy delicious, home cooked meals by a 1/2 nutty Mama & in turn stay up for third shift with son, you are hired!
When one gets thrown a punch, it seems as though the punches keep being thrown for a while-at least in my experience. Regardless, one must roll with the punches. Frustration with life seems to attack Lee & myself often. Running our own business is a challenge in itself, but we are so grateful & thankful for the nearness of our business to our home, the folks that help us, & the flexibility we are able to have as far as tending to Jack goes. Jack is so very needy & demanding that it is hard to see the rainbow over the clouds. As I reported in my previous blog, which was more of a comedic tale, Jack is once again in another bad cycle, all stemming from constipation. He barely eats anything at all. His hydration nurse tested positive for Covid about two weeks ago & he hasn’t been able to get that nourishment, which has made more of a negative impact than I would like. I am still on a constant quest to find something that will help Jack poop regularly. The meds they gave him from UNC, he hates with a passion & I get it. It is a huge dose of an unpleasant liquid. Jack knows if we try to mix it with juice or food, he absolutely refuses to take it. When he poops, you’d think we won the lottery. I never would of thought my life would revolve around the worries of whether someone is regular or not. But here I am! I didn’t realize until last year that being stopped up causes fatigue, irritably & that’s what we are dealing with along with a severe lack of appetite. He was at least drinking several cups of whole milk a day & Fiji water (remember only the best for Hugh Hefner). Me, I drink water out of a spigot! His water must be from the finest, most expensive reservoir on earth! The drinking has tapered off as well.
The peculiarities of Jack are very hard to deal with. Hugh recently wanted a Smart Water, these can be purchased at our local Dollar General, but it could not be a regular Smart Water. It had to be the bottle with a squeeze top, we got lucky that our small town had such! He took a liking to this bottle & actually drank several full bottles of water out of it in one day. A few nights ago, Jack wanted milk in the special squeeze top bottle-of course it was 1am when he made his request. The blooming nozzle would not come out so I poured the milk into the bottle without spilling it, surprisingly. I got the funnel out but it was slow go, I gave him a partly full bottle of milk & I knew he was going to complain about it. When I handed him the milk, he said the very thing I knew he would, “this looks like the amount you would give a pet”. First off, he wasn’t wrong, but at 1am, I was in no mood. He demanded for me to wake Lee so he could get the top off. Most children you could reason with, not this one. He’s as hard-headed as they come! So I walk into our pitch black bedroom & wake Lee to open the sacred bottle. Knowing full well what would happen when I was finally able to fill the bottle up with milk, Jack did not drink any of it & not much makes me madder than waste. When I went to close the living room & kitchen down for the night, Jack went & woke Lee yet again to tell him thank you for opening the bottle. Not only is he hard-headed, he is kind as well, but at that hour, we were both too annoyed to be thankful for that moment.
As Jack falls into yet another bad cycle, he sleeps too much during what are most folks awake hours & then is awake during what are most peoples snoozing hours. All this means, I am awake during normal awake hours & awake during sleep hours as well. I honest to goodness this past week have felt like what the walking dead look like on the outside, on the inside. Two nights in a row I only was afforded 3.5 hours each night. In this difficult cycle he is in also brings attitude. He’s had a BK Whopper warmed up countless times that he has been trying to eat for two days now. I try to stay on top of him & encourage him to eat & drink through the day & night. This is a daunting task, so nerve racking. Jack has recently gotten into Tom Brady & collecting NFL stickers to put in a book he bought from GameStop. This was considered a blessing to me because it is something positive & harmless…or so I thought. Y’all know I am not a girly girl, my nails are still trying to recover from the awful gel nail hell I went through back in early September, plus I like to keep my nails super short. If I see a speck of dirt under my nails, I feel so dirty. The stickers are so aggravating to peel off & of course Jack wouldn’t lift a finger to do this on his own. Everything he does, he MUST have someone else involved that he can boss around & control. As I’m trying to peel of the stickers, I remind Jack to eat. After I did a few (because I was annoyed trying to peel them off without any fingernails to help), I told him I would do the rest after he finished his hamburger. He shouted at me & said in his best demon voice “you’re gonna make me upset”! This was a warning. If I had not gone back & finished the rest of the football stickers upon Hitler’s orders, there is no telling what he would of done-truly. I really prefer Hugh Hefner over Hitler any day!
What is really frustrating to us is the running we do to appease Jack. The Whopper he had been working on for two days was sitting on his lap when he saw a Taco Bell commercial. He called me while the burger sat in front of him & wanted me to get him three tacos. Of course I did thinking this would be the magic thing to get him to eat, he didn’t. On Sunday mornings, Lee buys our employees breakfast every Sunday. It’s a little treat to reward them for working all week. He usually would get Jack a bowl of grits & a gravy biscuit, but most of the time, they would go bad because he had no appetite. Well Lee finally stopped buying breakfast on Sundays for Jack since it was a waste of money. This past Sunday, Jack demanded a gravy biscuit. Lee was already home, it was lunch time for us by the time Jack awakened. To keep Jack happy, Lee went & bought some biscuits from the grocery store & a can of gravy, assembled it all at the Berry Patch, delivered to Jack. He ate about 1/4 & never touched the rest. Our refrigerator looks like I don’t know what. There is nowhere to put anything or get something out without the pyramid of Jack’s leftovers & opened drinks Jack never finishes tumbling out. The foul language we use when opening that fridge is shameful! We are scared to throw anything out in a timely manner because he has been known to get very upset over his food not being in there.
Jack’s peculiarities are vast. We don’t cut his food unless instructed, we ask what kind of dish he would like it in, what kind of cup is extremely important also. Last night I was getting him some cheese dip that he requested, put it in a little glass dish & I was chastised for that. He said he was an adult & didn’t want it in glass. I said there is nothing more adult than a glass dish! This fella! My writing is only venting & sharing with those that are interested in Jack’s condition. People will absolutely ruin anything if you let them. I’ve had people criticize my honesty multiple times since I started writing about Jack & his condition. I feel like people needed to know about Dravet & what all it actually entails for him & us. A large majority of people thought I stayed at home all day doing nothing, although it’s not important what people think of me, it still hurt me to the core. This has not been a great day. Just this evening, I hit a family’s dog, it could not of been helped, but I sure did feel bad. It was a reminder to me how quickly life can change. We know this better than most. When Jack is hanging on by a thread, I often wonder how in the world does he continue. That child was built with more resilience than anyone I have ever known. There is a lot of studying going on in the gene world of Dravet currently, I think they need to study what makes these kids so strong. They truly go through more than any diagnosis I have ever heard of. I pray that Jack’s thread will turn into an unbreakable chain, one that will help him get to the point that he can enjoy life again. I’ve been in communication with several older Dravet parents recently & many see the same issues we do in Jack. Loss of zest for life, low energy. Is it the progression of Dravet or a realization that they are unable to lead the same life as their siblings or other able-bodied people causing depression? I’m going with the progression of Dravet. Ava just turned 16 last week & had a great party. Even though we smile, our hearts are never fully happy because Jack is never able to attend family functions. I love to take pictures as you probably already know if you are a Facebook friend of mine, I feel so empty snapping memories when Jack can’t complete the circle. I have accepted it, but it doesn’t make it any easier. Pray that Jack’s thread will turn into a steel chain, thank you each for your love, prayers, & concern.
Many of you have been anxiously awaiting this blog post about the ironing board turned upside down on our bed after midnight & after Lee had already been in the bed asleep without the ironing board on top of the bed. This whole ordeal spurred because I got sick on my stomach. I truly am beginning to think the purpose of my existence is to provide God with comedic relief, especially during such trying times as the ones we are living in-He really needs some laughter these days! Saturday night, Ava had a stomach problem which I have written about before, it’s called cyclic migraines. She had a spell in the middle of the night with that, or so I thought. When I talked with Mama Sunday, she described much of what Ava went through with herself that same night. I figured they must of had a little bug. I closed The Berry Patch at 7, but I had the Pioneer Woman’s 16 minute chicken pot pie on my mind plus, Jack had a request for shrimp, scallops, & clams. Of course Hugh Hefner did! Our fine grocery store of Ellerbe, Food King had shrimp & scallops thank goodness! He also requested a pumpkin pie after seeing a few cans of pumpkin that I had lying out on the counter. I was going to experiment with a recipe I saw on Facebook. Jack got the idea for the seafood from watching my fave Guy Fieri on Food Network. I have always, always, always said I was going to write a rendition of If you give a pig a pancake book about Jack. If Jack sees something, it leads to something else & the trend continues all day fetching this or that, doing this or that. I also had a ton of clothes to deal with. It had been a rainy/cloudy week & I wasn’t able to hangout clothes until this day since the sun was finally out (y’all know I’m a hippie). I had also ironed several things that needed attention. My aunt has always said a good indication of getting a stomach bug is an increase in hunger, I’ve never experienced that because I’m always hungry, but I definitely had an increase in energy. Those clothes have been awaiting by the ironing board for months-no joke! Why I waited til then to do it, who knows!
Well, Sunday night just after midnight, I got the sudden urge to vomit & all I could think about was never eating food again-y’all know I was sick if I never wanted to eat again! Thankfully I never threw up, but I got weak as water, hot, belly aching. Throwing up is so traumatic for me. I never do, but when I do it’s so hard, loud, & vile. I feel like Billy Blanks has done the P90X inside my very out-of-shape body. To the bathroom I ran! I looked like our customers, the ones that have a certain gleam in their eye signaling to us they need a bathroom, pronto! We are always able to predict what a customer wants just by the look in their eyes, call us the produce psychics. Be it peaches or strawberries in December, Dixie Lee peas in March, thank goodness we can at least have the restrooms year round! There’s a look in the eye for all things produce related, not just what Gary Puckett & the Uniongap sing about in their song, Woman, Woman when he croons “a woman wears a certain look when she is on the move”. Remember that tune?
At that hour of night is mine & Jack’s witching hour. I get him up to take him to the bathroom, brush his teeth for the night, give meds, change clothes if needed, read the Bible while he’s on the toilet or sing songs while Teddy’s nosey self tries to barge in on our time. But with my belly grumbling, I knew Jack would not get any Mama time that night. After my first run to the bathroom, I figured we must of had a quick, little bug. I have ovarian cysts that erupt from time to time & when I do, everyone in Ellerbe knows it. I holler & cry something awful. Lee was well rested by this point, he had had seven naps from 7pm-midnight & I ain’t lying about that so I didn’t feel bad about collapsing on our bed begging him for ice water. He shot up like a light & asked if it was my uterus! I didn’t even know he knew what a uterus was! I wanted to be my usual sarcastic self & say “fool, I’m not pregnant” 🤣🤣 but there was no energy for that. In Lee’s rush to get me some ice water after I collapsed on the bed for my parched throat, he takes the ironing board & throws it on top of the bed upside down.
The calamity continued, after going to the bathroom again, the toilet decided to clog. I’ll tell you, they don’t make commodes like they used to. We remodeled our house during the governments “save water” campaign-MISTAKE. My advice to all new couples is to purchase a washing machine, dryer, refrigerator, & commode from a very old house having a yard sale! We don’t have enough water in any our toilets to cover the hole hardly. This is the “hole” issue-pun intended. That dinged-danged commode gets clogged all the time! So that was another issue Lee was going to have to deal with. Doesn’t a commode always clog during a terrible moment? As I was on the throne, Jack tried his best to get into the bathroom. Sweetly he asked from the other side of the door if I needed anything, then he said, “what about my pumpkin pie?” I can’t tell y’all my thoughts on this one! When I finally got to come out, I began feeling better & sat down in Jack’s recliner for recovery & support. Lee was full-on in Mama-mode but very aggravated & sassy. I get it, he gets up early & deserves a nice sleep, but I got immense pleasure from him having to do my duties, too much pleasure in fact. Jack wanted all his clothing to be changed even down to his undies. While Jack was waiting on Lee to come back & help, Jack called me over to his bed to investigate what was on his legs. There were pure white dots speckled all over his thighs, I had never seen anything like it. My mind already delirious from sickness, I began running through disorders in my head convinced Jack yet another rare condition of the skin this time. In walks Lee with a wet washcloth, it was toothpaste! I needed to rest! Lee had already gone through the interrogation of questions while Jack was using the bathroom & brushing his teeth which I found so comical, but the questions still kept rolling. As I sat in Jack’s recliner watching the spectacle, I snorted with laughter, the kind that makes you cry. Nothing Lee did was right. I was saying in my head “welcome to my world”. Let’s face it, most duties fall on the Mama’s, so being able to watch this brought me the utmost joy.
Quick update on Jack. He hasn’t been doing so well this week. He fell into a bad slope due to constipation. So we are back to trying to get him to ingest liquids & food & trying to get him to sit on the commode which is such a struggle. I can’t tell y’all how much time it takes to get Jack to just ingest a cup of drink. None of us mind doing anything for our kids at all, but just imagine the patience it takes to do that & then the eating. So much of my time is devoted to Jack trying to provide just the basics for him to live, not to mention the time just hanging out & sitting with him. If y’all can be in prayer that Jack gets over this hump quickly, we would appreciate it.
There you have it folks, a tale of an ironing board, cooking, sickness, & laughter all rolled into one. By the time Lee was finished being a Mama, he was good & ill with me for laughing like a hyena. He went to bed pouting, I went to bed laughing for once instead of crying and/or frustrated. And pictured below is Jack helping me make the pumpkin pie he ate only one slice of which I had to make when I got home from playing two softball tournament games after 10:30pm the day after my bug. Let’s hope this is the last sickness of the year!