I haven’t blogged in a while & I thought I’d catch y’all up on what’s been going on in our lives & our journey with Jack. Life has been pretty difficult since coming home from the hospital back in March of this year. When I say life is pretty difficult, I don’t mean like last year when Jack was so sick, I mean in a sleepless in Ellerbe way. Lee always hashtags “Ellerbe Strong” on his Facebook posts, but my new hashtag is “Ellerbe Tired”. My whole life now revolves around either trying to keep Jack awake, trying to wake him or trying to get a few hours of sleep myself during what we consider typical sleep hours. Sleep for all Dravet patients & their caregivers is not something that comes naturally. Very often Dravet patients don’t sleep well because of seizure activity during sleep. The nighttime hours especially during the ages of 4-16 were particularly rough for Jack. Little seizures like head drops or arm tremblings would occur in the middle of the night maybe up to 100 times in a row, then he would have a full-on grand mal seizure as a result of the 100’s of seizures prior, sometimes five or more grand mal seizures (the kind you see on tv) a night would occur. Often times with Dravet, these kids/adults have subclinical seizures that can’t be detected that also disturbs sleep. Jack’s circadian rhythm is off big time! He sleeps four hours, then awake for four hours, sleeps for four hours, awake for four hours . This goes on all day & night. I’ve written about Jack’s sleep struggles & ours many times, but nothing has ever been this severe or extended. Life has been pretty depressing as well. With the days being shorter & cooler, the The Berry Patch doesn’t need me as much, there is not nearly as much going on as in the spring & summer, I feel useless in some ways & lazy also. If Lee nor myself aren’t working 15 hours a day, we make ourselves feel shamed even though our rational minds says it’s okay to slow down. We enjoy the hustle & bustle. It takes our minds off of stressful brain noise that can be a constant when you have a special needs child. We are also going through empty nest syndrome. Ava is 17, off doing teenager things & that really does make me happy, but I do miss the days when she & I watched Patty Duke every night. She might be the only teen on the planet to have seen this show! Lee comes in & goes to sleep with Jack & there I sit!
Jack has taken us back to food struggles in many ways over the last few months. His appetite is still good, but he is still busy ordering food & not eating it. We have two full-sized refrigerators in our house, one for the kitchen, one for Berry Patch stuff-neither are big enough! Jack needs a full-sized fridge in his room for everything he orders just so we can have room for the aforementioned. The waste is unbelievable. Jack has been more mobile since his return home & getting out way more, although it’s great, it is also annoying. Jack orders all kinds of food & doesn’t eat it, then he orders food to take home that he doesn’t eat. The amount of money he wastes on food alone would make any financial planner fall over dead! Jack can find fault with anything, really pushing you to the limit all the time. If his food isn’t on the right plate, or cut just so, or he will say he meant to say he wanted something different other than what you served him-doing absolutely anything to get out of eating. Drinking is also an issue. He doesn’t love to be hydrated, this is a trait he inherited from Lee. It’s “the cup is wrong, didn’t want a straw, the drink is too cold”, the list is endless. We get so aggravated with trying to serve the master of our domain because he acts like a tyrant (hence his nickname Hitler). The amount of effort it takes every single moment to get Jack to either stay awake, wake up, drink, eat, sit up, take meds, move around is exhausting. It is like having five full-time jobs.
I posted about two weeks ago on Jack’s anniversary of going into the PICU on life-support & how pleased we have been with how well he has done & how our prayers were answered with Jack’s behavior. If you happen to be new to my blog, for years, Jack was violent with us & attacked us often. Two days after my praise report Jack fell asleep in our bed. It was past Lee’s bedtime & he tried to wake Jack to get him out of our bed which has become a second home to him. Jack had an outburst & started hitting Lee. It had had been a little over a year since Jack got violent with us. This is such a depressing change of events. The only humor I could find in the situation was tonight while Lee & I were watching The Sopranos & Tony’s son Anthony was giving him lip, Tony grabbed him by the throat & threw him against the wall. I told Lee that Tony Soprano needed to be Jack’s Daddy! We did the only thing we could do with Jack during his outburst, which was to hold him down, talk to him soothingly & he stopped pretty quickly. Later he told me he couldn’t control himself. I don’t know where he heard that mess. In my head I’m cussing him out, but all Jack’s saw was a caring face. I’ve touched on the fact that a few of my dreams have come to fruition in a past blog & how I am sometimes tormented by my dreams. Many times my dreams are warning signs of trouble. For the last few weeks I’ve dreamt of snakes, some violence, hard stuff, now I know why. I knew something was going to be going on with Jack, I just didn’t know in what way, shape or form.
And while we aren’t as stressed as we have been, we do try to do more with Jack because he isn’t as bad as he used to be but here lately as explained above, we can see some attitudes popping back up. It makes everyone around us elated to see Jack out & about, but people don’t realize the stress it creates on mainly me since I’m the one doing with him most often. Jack is a thief & doesn’t know it! He orders all the food in the world as I mentioned & never eats it, if you take him somewhere he wants literally everything he lays his eyes on only to never touch it again, & he can never really enjoy the moment because he is too busy thinking about what he can spend our money on. I hate to sound so negative, but if there is ever anything people can say about me is that I have been honest & upfront from the get-go. Jack will test every single limit you have every single day. He was better this past summer because he was swimming several hours a day & burning off extra energy. Now that the pool has closed, we have seen a change in behavior & energy level. No one wants Jack to be involved more than we do, but it is not easy & tears my nerves all to pieces.
Though this blog sounds like a ‘let’s dis Jack blog’, he is a sweet, caring, funny child. He still randomly says he loves us, always says thank you, & cares about whatever it is we have going on, but Jack needs to be on something for his behavior, but prescription meds for this are not his friend & typically not a friend of Dravet. A lot suppress the appetite which we don’t want to do, a lot interfere with his meds, & a lot don’t mix with Dravet period. It’s a game sad to say. He needs some sort of stimulant to stay awake during the day without affecting his appetite, making him more aggressive & more attitudish. Some of y’all know I dabble in natural supplements so I am looking, but I have to be very careful with those as well due to his seizure medications. Not only is Jack sleeping when we are at work, he does not have any interests at all any more to help keep him stimulated. He rarely touches his phone, never his Nintendo, computer, tv & on most days, these were all things he would not do without at one time. The good thing is by not having phone interest, he’s not talking to strangers & getting catfished. Christmas shopping for Jack is also very difficult now as well. He has no interests any more so I feel like everything I am buying for him is pure & utter junk that will never be touched. Jack is very much looking forward to Santa visiting & leaving him gifts though.
One moment that shocked me with Jack a few weeks ago was when one of his favorite Power Ranger actors died in real life, Jason David Frank. Jack has not cried since he was a toddler, even with various family members passing away, all the needle sticks & illnesses. When I told him the news about one of the founding father Power Rangers, he threw himself on the bed & cried for about thirty minutes. Jack was in a depression for days. I said that boy probably wouldn’t shed a tear when I pass on & there he lay crying over someone he doesn’t even know!
The blessings we can count even with severe sleep deprivation are Jack’s health, his sense of humor, continued appetite, & not talking to strangers online. I am so thankful our Christmas this year will not be spent in a hospital. As a year has passed since Jack’s hospital entry, to me it seems like yesterday. I think of that period each & every day. It was misery. I knew in my heart with every fiber of my being that Jack was going to be okay. God spoke to me & gave me that sense of calm & knowing, although the storm getting there was anything but calm, it was a category five hurricane! As we go through this special season of celebrating a healthy Christmas at home, we would like to thank you all once again for the prayers, caring hearts & offers of help during Jack’s illness last year. You all mean the world to us, have a Berry Merry Christmas!