I have not blogged lately, as things have been a little cray cray at The Berry home over the last few months. My life is in turmoil I feel & it all is centered around sleep deprivation. Never in all my years of caring for Jack have I been this sleep deprived for this long. It really all began prior to Jack getting sick last year. He would sleep much of the day & be up most of the night & early morning, falling back asleep when my day was just getting started. Once Jack went into the hospital, the lack of sleep continued due to hospital stuff obviously & that was for three solid months. When Jack came home, things did improve, briefly. Lack of sleep was no problem then because I was riding on a wave. A wave so blissful, calm, & peaceful, & one of pure joy that nothing upset me. For five wonderful months, Jack was seizure-feee, behavior outburst-free, & in excellent health minus him having Covid but did well with it outside of extreme fatigue. That period was one of the best eras of our lives, it just didn’t last nearly long enough. When the shoe fell, it knocked a hole in the floor! It took one seizure to bring back the old Jack that I feared for many years, that made me perpetually exhausted, depressed, afraid to the leave the house & scared to live in it at the same time. It was three weeks ago that Jack blew up at me over something that we had not even been discussing. I was home alone (usually am during frightening times), didn’t have my phone on me, but I was able to escape out the back door before it escalated. I was terrified. We have no neighbors that I could go to if need be during the day, so I waited about twenty minutes outside in my nightgown looking like a hant before going back into the ring. I was hoping Jack might be calmed down before I went back in. He was in his room with the door closed. I called Lee & waited back outside until backup arrived. About the time Lee arrived, Jack came out saying “I’m glad I didn’t do what I did in the 5th grade”, which was beat his assistants tail. Nothing is more disheartening than having your own child be violent on you or someone else & it would not be as scary if he weren’t strong as Andre the Giant, Hulk Hogan & Ivan Kolff put together. It would be so very different if I could defend myself without him or myself getting injured. That one seizure turned into dozens of seizures before we could get a handle on them.
The other issue that has brought back “old” Jack is him looking for a girlfriend/wife. Since being home from the hospital, Jack has not been on his phone nor iPad hardly any which has been a huge relief for us…until the seizures started back in August. That is when the search began for a girlfriend/wife & inappropriate communications with strangers started right back up. The one positive from his hospital ordeal is he’s not as consumed with the phone as he was last year. There are days that he doesn’t even turn it on. If Jack could have hobbies, help out at The Berry Patch or had friends, I think that would help take some of the worry off his mind about having relations with another woman (that sounded Bill Clinton-ish). Back when Jack was very active on his phone, talking day & night to strangers & getting catfished, he did some terrible things that I will never speak of. I tried to reason with him when he was 15 that he didn’t need a wife then, he was too young. I told him when he turned 21, he could start looking for a girlfriend & he wanted me to help him find a young, blonde woman for him. Of course my wisdom didn’t stick at that time, but he didn’t forget what I said. When I told Jack that, I honestly did not think he would still be living with us. I thought he would be in a facility due to the violence. It was bad if you’re new to my blogs, I mean terrible. I used to carry mace with me at all times in the house. A few weeks after he turned 21, Jack brought up the girlfriend search. I had totally forgotten about my promise. He keeps asking me now, & I keep telling him not everyone gets married, not everyone has a girlfriend. We have to do what the Lord guides us to do. He’s been okay with that thus far.
He has also become obsessed with going out to eat a lot (like his Mama). The problem with that, he always demands to go during inopportune times. When he gets to the restaurant, he doesn’t eat, then orders enough food for a family of four to take home, hence the nickname Hugh Hefner. During one of his more recent outings, his main caregiver, Sherry took him out to a local Mexican restaurant, Jack met saw a group of family friends there & made himself at home at their table! Which they were wonderful to him & I am grateful they have such kind hearts.
My bubble has been burst. When Jack was released from the hospital, he was so kind, loving, & caring. Sporadically saying ‘I love you’ all through the day. I understand how seizures can cause behavior/mood changes, I can’t imagine what his poor brain must feel like & body, but in the throws of the situation, I don’t think about that. All I can center on is why we have to have so much turmoil in our lives, how can someone so sweet strike you like a viper in a millisecond, & honestly, why me, why us!
One of the most difficult aspects of managing Dravet Syndrome outside of communicating with his neurologist is medication. It is very easy to over or under medicate. Jack has been on the very same seizure medication regimen since 2017, it was time for a change, particularly with the rapid weight gain recently incurred. Jack has an issue with low blood counts so I wanted to make sure we stayed away from increasing a particular med he is on & keep that dose the same since it can make those levels lower, but who am I kidding, all of his medications can have mild to severe side effects. I was given two options from his doctor since there was one I wanted to avoid increasing. One is known to be the worse one for behavior so that option was immediately out. The other instantaneously caused an outburst. There I was left with the option that I didn’t want to do, but had to do it any way. Every increase has to be slow. I started the increase with the nighttime dose only hoping that would be the only increase, but again life laughed at me & said ‘increase both am & pm’! Thus far, it is working. I am grateful for that & pray that it will continue to for a long time.
As I try to make it through each day so very sleep deprived that I forget nearly every single time why I walk into a room & have a difficult time speaking the English language, I say to myself, ‘how much longer can a person exist so inadequately rested’? The only answer I have is, until I can’t. If I’m lucky, I get about three hours of undisturbed sleep right after falling asleep & from that point on, I am doing math-calculating down to the seconds how long I’ve slept. Then the process starts all over again on & on until I finally start my day. Jack’s typical schedule is: he goes to bed at 2am, wakes up around 5:30am, is up until 9:30am, back to sleep until 1pm, naps at 7 or 8pm, wakes at 11:30pm & the process starts all over again. Waking him up is such a struggle, you don’t know hard labor til you give waking Jack a go! This is such a mean, evil process & one of the most unspoken aspects of Dravet Syndrome. Some many Dravet patients face severe sleep challenges & means so does the caregiver. With our line of work, it is impossible for Lee to help out with him having to be on the farm early in the mornings.
I feel like I have a newborn but without the luxury of being solely a stay at home Mama as I was for many years & without the energy of a youngster. Now that the kids are nearly grown, I have way more responsibilities with owning & managing a business along with the duties of a 20 something or 30 something new Mama. I’ll be 47 soon & I’m tired before I even wake up. My energy level is not what it was. I’m an illbox (as my Daddy refers to it as). I can’t stand myself because I’m so sleep deprived. It wouldn’t be so bad if Jack didn’t have the seizure risk & I didn’t have to constantly listen out for him. I have a monitor in my room & can hear every single movement he makes, even if he rolls over in the bed. Being able to hear like a hound dog definitely has it pluses & minuses. I would love to have a doctor like Michael Jackson had for a few days to knock me out (without death of course)! Propofol sounds real good right now! I’ve had that & Morphine once each in my lifetime & it was the best time of my life!
As I close this blog, not only do I ask for prayer for a better sleep regimen for Jack & myself, but ask for prayer for a Facebook friend of mine. She doesn’t live in NC, but she lost her 15 year old Dravet son this week due to an extended seizure. That hits home for every single Dravet parent in the world. Our world is small & these losses are horrifying. This syndrome is so devastating & complex & affects the whole entire family. Thank you all for caring & praying. 💜💜💜