“A Moment” by Heather Jackson, Zaki’s mom
each one lived independent of each other
startled from my sleep
looking at the clock how long will this one last
too many moments put together is too much to take
I have become very very good at living each moment isolated from the next. I very rarely would let my mind time travel to the future to think about if Zaki will be able to live by himself, will he fall in love, and will he marry? We are working on learning the his alphabet right now. He’s 13. But he knows his colors, and he can play a mean game of Wii bowling. We are making it to the toilet all day now… I measure only what we can do, never in what we “can’t”; in fact the word “can’t” is a four letter word punishable by push ups in the Jackson abode. For anyone. Stranger or family member, including my teenager.
I don’t care what Zaki “can’t do”. Pausing and giving 10 pushups. The girly kind with my knees on the ground.
I am thrilled he is still here with us. He is for the most part happy (hey – he is a pre-adolescent boy) carefree (always), feisty (I did whisper in his ear uncountable times to “fight, fight baby fight”) and lives life fully engaged in each moment. Perhaps he learned that from me? He has no idea he is different from anyone else. And he has no recollection of his history. A gift. I wish someone could give me that gift. Zaki’s seizures started at 4 months old. 2003. They were subtle at first. I did not know they were seizures. I thought he had a very strong startle response. He was my angel. He was perfect.
As I would hold him in my lap at 5 and 6 months, you could very obviously see a pronounced head drop. If he were holding a rattle it would fly across the room… as would my mind, “what was that? This doesn’t seem right; it seems like that ‘nod’ hurts him”. I was not very good at living in the moment at that time. Not yet.
After a doctor appointment where he had several episodes in the office the doctor took out his prescription pad and ordered an EEG. I came to loathe that prescription pad. I didn’t know what an EEG was. I thought he said EKG, and wondered what could possibly be wrong with his heart. This is the moment in which I learned to carry a little notebook with me. And how to research. Not the cyberchondriac type of research. But the type that may have earned me an honorary neurology degree at this point. Of this I do not brag. I wish all I had to look up was a good recipe, and what colors may complement each other on the wall on Pinterest.
Long (very long, agonizingly long) story short – Zaki was diagnosed with Doose Syndrome, a rare catastrophic form of early childhood epilepsy. That honorary neurology degree came in handy. I had diagnosed him in my little notebook prior to the doctors. The perfect boy spent the better part of a decade seizing, doped out of his mind on pharmaceuticals, 17 of them over the years. The ketogenic diet. Where every bit of food is weighed to the nearest 1/10th of a gram. Side effects. Insomnia, anorexia, gaining weight (In fact doubling his weight), bone loss, cataracts, rages, rashes. I lived in a new world, where I had no time for friends, for a job, for TV, a good book, anything other than trying to keep my perfect angel alive. And prayer. I made time for prayer. We tried every “alternative therapy” you could imagine. If you wanted to take my money with the promise of helping my boy, I would give it to you. Just MAKE IT STOP, because I didn’t know how much his little brain and body could take. In fact, I was not a worryful or melodramatic mother, the doctors weren't sure how much he could take either. When the seizures number in the hundreds a day, and we discover by EEG that even when he is not having a physical seizure, his brain is still having ‘silent seizures’……..about every 10 seconds…. Well even the doctors try to prepare you. Just focus on quality of life, enjoy the time you have, you should prepare, and you should make arrangements for if…… I am sorry I trailed off there… what did you say??
Zaki was given hospice palliative services. Besides the cold hard blunt truth of that, and when we weren’t talking about DNR’s, who to call if I came into his bedroom in the morning and he was no longer alive, how could I help my teenager who lives with the same moments I do with his brother. It wasn't all bad. We smiled, we laughed, we really really lived life, and this is the point in time I learned to stay in the moment. We could turn our living room (we were pretty much hostage at home for many many years) into any place in the world with cardboard boxes, blankets, and a good children’s book…This is how I survived this decade. But there were times where I succumbed to the stress of it all. I can’t do this. Crying on the toilet. Literally my only alone time. I can’t…..
dropping and giving 10 pushups, hard to do in the bathroom….
I do not have the strength today
crying sobbing uncontrollably in the shower, where no one could see me
I can’t count another seizure in a log book
I can’t deal with one more side effect
I can’t bring up one more research paper
more pushups. These are the thoughts that could invade my mind if I time traveled to more than a single moment.
so I wouldn't
The day is Thursday 7/19/12 and there were many beautiful providential moments that led to this exact moment in time, everything is a little bit of a blur. But not this day. This is clear. I gave Zaki his first dose of medical cannabis before bed. At this time Zaki was having full body electrocutions that looked like (paddles to the chest - - “Clear!” – like you see in the movies) only the source of the electric bursts was his own brain. Brief, violent episodes every 2-10 minutes while he slept. He has 6 different seizure types, what can I say, he was an overachiever. His days, not just his nights, were full of seizures too. I gave him his first dose of cannabis in a syringe, like you would give a baby Tylenol. I was “cautiously optimistic” I never used to use caution with my optimism, but this was a task I learned from our history. Because even though I learned to live in the moment, the history, it was there all the time, slammed together in a blur of pain and seizures, and it was sadly –a hope killer.
I am glad you are still reading, because this is where it gets really good. He did not have a seizure in 2 minutes, or 10, or for many hours. In fact I fell asleep next to him, and woke up startled before he did to find he was not having any seizures. We enjoyed 2 glorious days of no seizures before they returned.
I hung on white knuckled to hope
moment by moment
What followed was almost three months of adjusting his dose, coming off some of his pharmaceuticals until 10/4/12 the day he had no seizures, and he has not had one since.
Zaki has been seizure free almost 4 years at of the writing of this.
seizure free - - Seizure Free - - SEIZURE FREE
I am daring to experience life in longer increments than a moment
daring to have hope for his future
that he will fall in love and get married one day
although if you ask him, he says no, if he marries anyone, it will be me
Zaki. A fighter to rival all. Enjoyer of life. Giggler of all little things amusing. Conqueror of all things boy. He is thriving. He is learning. He is loving life. He is a giver of hope. To mostly me. But maybe he has become a little bit of a symbol to what freedom can give. Freedom of choice to use a plant. Freedom from seizures. Freedom.
Zaki is changing the world in his own way. And now instead of spending my day fighting seizures, I spend it fighting for people who need access to this plant.
There are many to thank along this journey. God first and foremost for sustaining us; my church for their never-ceasing prayers. My family & friends, especially the ones who stuck around during that scary, disconnected time. I know you love me, and Zaki. To the Stanley’s- Joel, Jesse, Jon, Jared and Jordan who bred this “beautiful thing” And who continue to work feverishly to bring it to many. You all are love and light. You are selfless, and I intimately know the great personal sacrifices you all have made. I know. And that may be all that matters. I love you all more than words can articulate. God used you to save my boy. To Paige Figi. A brave fearless mom who took the first step. Why we have Charlotte’s Web™… I will ‘out love’ you. I cannot imagine doing this shoulder to shoulder with anyone else. Your strengths are a sight to behold. I love your weaknesses just as much, and I know you love mine. I stand in awe of you. To all of the other parents who paved the way before us. Although only a few of you… you gave me strength to also shatter the norm. To be disruptive. To not shut up about it.
every one of them lived
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