Tony Robbins makes a comeback

I’m not sure if I have shared this before in precious blogs, but for years I have said Jack is bipolar. He has so many symptoms of the disorder. I, however, have a hard time convincing his doctors of this. Their response is always his behavioral problems stem from Dravet. It is not unheard of that people have more than one diagnosis, why I’m not taken seriously on this I’ll never know. Jack is on seizure medications that are often recommended for bipolar disorder, but as you know, not all mediations are one size fits all. Jack’s medication management is very difficult because he refuses to go to doctors appointments. I was extremely lucky back in January to get him to Chapel Hill for his yearly neurology appointment. Because of his refusal to go more than once a year, I communicate with his doctor via email. His doctor is so gracious & understanding about Jack’s behavioral issues, that he is kind enough to do this for us. Most doctors want to see you before making any medication changes & during the change, this is not an option for us, so I am eternally grateful for the understanding heart of Jack’s neurologist.

The symptoms of bipolar disorder fit Jack like a glove. He goes through cycles where he is really, really good (which are few & far between), then gets really, really low. I call this the spin cycle. When Jack was younger, he hardly talked at all. It wasn’t that he couldn’t talk, he just didn’t. Then one day, he started talking excessively (BP symptom) & hasn’t stopped yet. We finally had to stop eating meals with him, he literally talked our ears off. It was so maddening that none of us could speak because Jack consumed the entire dining experience. We would have eaten our meal, gone back for seconds & he would not of eaten a bite. He also must be the center of attention in all instances another characteristic of the disorder. One that we deal with constantly is his sleep patterns. Jack more often than not sleeps either too much or too little, neither one resulting in a good outcome. There have been times he has slept for a solid 15 hours. You would think this would be better for him, but it’s not-he is ill as a hornet! It’s so hard for him to find a healthy balance with sleep which can be a Dravet issue as well so we have two double whammies with Dravet & BP making sleep even more difficult. Eating patterns of eating too much or not enough with the latter being his preference. He has days that the only thing he will touch is a one little frozen meal for days in a row & maybe 6 ounces of drink. Then there’s the symptom that is the most horrific, closing himself off from everyone. That one is the most challenging & scary. Those are the times he gets deeply involved in chatrooms, communicates heavily with strangers, listens to songs with strong profanity, asks people to come live with him, & can become violent.

There’s also the times that he is so annoying to everyone & just plain mean. This week though, I have gotten the pleasure of Jack showing us his Tony Robbins side. Tony Robbins was once a famous motivational speaker. These are the rare moments, the moments I want to hang onto forever. He has been very appreciative of us doing things for him, talking about hope & learning from mistakes, playing Bible games. He’s even been smiling & laughing a lot. It is amazing! What’s so scary about this particular cycle & makes me know for sure he is bipolar, is these moments don’t last. They are fleeting & the bad oozes back in in a flash. And when the Jekyll & Hyde side returns, it gets crazy around these parts as you all have read!

I still haven’t heard from the Dr. Phil Show. I never thought I’d be a candidate for a talk show & certainly never thought I’d need to go on one because of one of our children. If anything, I figured I’d be a special on Jerry Springer! Here’s a funny little story about how Lee & I were almost not a couple. Lee & I have been in the produce world a long time. I started my first job that I loved so dearly at a farm stand called David’s Produce at age 11, Lee started when he was 16 or so. He was the cutest thing I had ever seen, but there was one caveat, he was five years older than me plus, he was mean as a snake! Throughout our long tenure at DP, Lee & I developed a somewhat friendly relationship, we joked around on occasions but mostly he ignored me. A few weeks after celebrating my 18th birthday in October of 1993, Lee asked me on a date-he had to make sure I was legal & all! Now, my parents had heard me talk about Lee for years since we worked together pretty regularly & they were okay with us dating. We went on plenty of dates prior to our first family Thanksgiving meal the following month. Lee came to the house & picked me up, it’s not like he picked me up from the driveway. In November of 1993, a month after we started dating, we celebrated Thanksgiving. We were all hanging out around the table chatting, Mama, Daddy, Jodie, her husband, Lee & myself. The topic of high school graduation came up & Lee said he graduated in 1988. Mama said well how old are you, Lee said 23. Mama’s head nearly flew off! I got blessed out for dating such an old guy. Thanksgiving was ruined, time for Jerry Springer! Lee was mad because I didn’t tell them his age, Mama & Daddy were mad because I was dating an old man! I honestly had no clue they didn’t know his age. I had worked with Lee for years so I figured they knew his age, it didn’t cross my mind to share it. Thank goodness we had already eaten our Thanksgiving meal or I would of starved that holiday! I’m not sure how it all got smoothed over since I’m 43 now (the mind is starting to slip), we did continue to date after that explosion lol.

I’ve heard people talk about bipolar disorder before saying it’s not a real disorder, that the behaviors are put on, honestly, they are not. The disorder is real. It impacts the family as a whole. Safety is threatened a lot of times when dealing with this mental illness & others. A family is often forced to cater to unrealistic wishes. Treatment can be extremely difficult. Although are lives are all of the above, we are extremely lucky to be blessed with family & caregivers that can step in & help when needed. If it were not for these people, we would be on serious medications! Just to reiterate, please know we are externally thankful for your continued prayers for our family. It is so reassuring to know we have a team of friends praying for peace in our journey. Pray that Tony Robbins will continue to stay!

Author: dravetsyndromeblog

44 year old Mama of three kids, wife of a farmer, & business owner. View all posts by dravetsyndromeblog