I’m not gonna lie. It’s been an emotional week on the homestead. The issue of putting Ryan on the latest seizure drug came up after a phone call from our doctor’s office. Then I talked to a new friend in Bellevue who is trying to pass Will’s Law to make medical marijuana available in Nebraska. Every time we talk of changing things with Ryan’s regimen, I get emotional. That chronic grief rears its ugly head. Again.
When we saw Ryan’s seizure doctor last, he was ready to travel to DC for the national epilepsy convention where they were rolling out the newest seizure med – Fycompa. This medication has a different mechanism of action than any other seizure med on the market, and our doctor wants us to try it. I’ll be completely honest and tell you my attitude is very much this. Why the heck not. If it gives us two or three months of decreased seizures, then it’s worth it. But I don’t believe it will work long term. They never do. I gave up on drugs a long time ago. And they often come with nasty side effects; so bad we have had to take Ryan off of several medications because we couldn’t get him to a therapeutic dose because of those side effects. Things like sleeping for 20 hours a day, not being able to walk because he is so drugged and out of it, falling over when trying to walk. And this new drug has the potential for all those same effects – aggression, dizziness, vertigo, problems walking, sleepiness, feeling tired, falls. These new drugs have never been a win-win situation for us. They are more like a try-fail. But if we never try, we don’t find out if something just might have even the slightest effect on our raging battle for control. It’s the emotional upheaval every new drug brings that is hard to prepare for. We gear up, put on our game face then end up disappointed when nothing changes except the amount of pills we have to prepare twice a day. The fact is, Ryan’s epilepsy is malignant. Yes, it will kill him some day. There is no cure. There is no hope of recovering the years of brain damage he has. There is no magic moment when we will ever say “we did it!” we cured him!”. And I can live with that. Sadly, emotionally, grieving, heartbroken and frustrated. Yes, I can live with knowing my Ryan will die younger than he should because there is no cure. But what I can’t live with is that nagging, pestering feeling in my gut that I can’t give up on him. That I can’t give up on any drugs that just might give him a better quality of life than he has now. He’s got a lot going for him. He’s loved, he’s spoiled, he’s attended to (sometimes too much so), he’s happy and well cared for. But he still falls. He still hits his arms and legs and head and rear end on the floor when the big ones come and throw him to the ground. His brain still seizes non stop. All day, all night. We only see a few hundred of them a week but inside, where no one sees, they are relentless. I know for certain is it solely by the grace of God Ryan hasn’t had a head injury yet from his seizures. With four craniotomies, he has a lot of weaker spots in his skull where injury could easily cause a skull fracture. He has one fourth of his brain missing where fluid fills the gap and a strike to the head could cause shifting and swelling. So how do we stop?
It’s one thing to say no to more surgery. And the doctor wants to do another brain surgery on him. But we have said no. We have put our foot down. We have already put him through four of those invasive, intensive surgeries. And a vagus nerve stimulator. And 19 medications. And several diet changes. And vitamins and herbal remedies. But what about medical marijuana? We’ve raised the questions several times over the past few years in curiosity and intrigue. It’s legal in twenty other states, but not here. Not for seizures. Please don’t be naive or judgemental or jump to conclusions. Do your homework. Read the articles below. Be open minded. We aren’t talking about weed or pot that gives people a high. This is about the oil, the process of straining out the cannibidiol for medical purposes. No high, just soothing, purposeful effects to slow or stop epilepsy. It works for many people to control seizures, to help with the devastating effects of nausea from chemo, to control pain, to give relief from the horrific effects of MS and other diseases. I was blessed to meet a new friend by the name of Shelly Gillen who some of you may have seen on the news or in the paper. She is an advocate and initiated Will’s Law to legalize medical marijuana for epilepsy which was actually pulled recently during the ongoing legislative session because it couldn’t get the backing it needed. She is also a lifelong friend of someone we went to high school with who happened to connect us. Thanks Julie. UNMC is the only level 4 epilepsy center in the state and the law needed their backing but they wouldn’t do it. They wouldn’t back the bill. There is a hearing at the capital on Wednesday I am going to attend; I’m not going to testify but I will write a testimony to be admitted at the hearing. We aren’t even sure if we would put Ryan on cannibidiol oil if we could – we probably would – but the point is this. Right now giving it to him isn’t an option because it’s illegal, but it works. It’s effective. It’s proven by many other desperate parents out there who only want to give their kids the best chance at a great life they can give them. They are loving, committed, hurting parents just like us. They want to soothe the ache, they want to see more smiles, they want to hear more laughter, they want to ease the stress that living with hundreds of seizures a week brings. It’s not easy to do this thing called raising a kid with special needs. Some days feel unbearably painful while other days feel tolerable and the worry and difficulties seem minimal. But it’s always there, lurking in the corners of every room. A parent who has watched their child suffer from any life threatening illness knows the grief, they know the horror of being helpless. They understand the emotions and the ebb and flow of futility. They live the lonely road. Because every one of us has tried. And tried. And tried. How do you give up on a life so trusting and helpless and innocent? Why do you stop when there are options out there even when they are out of reach? When do you say enough? We simply don’t. We put one foot in front of the other, fighting and pushing and screaming and crying and praying without ceasing. We dream big dreams that we know will never come to pass. But we never stop believing. Hope is always present. And if and when the day comes when the doctor says, we’ve done everything we can, and we know Jesus is calling him home, then we give up and let go. Because on that day, whenever it may come, we want to be parents who gave our all, who fulfilled the promises we made over and over again, who loved and sacrificed and begged for answers and solutions, who did our very best. But until that day approaches, how do we stop?
It’s the churning of the wheel. It’s the fog that doesn’t life. It’s the breath to be exhaled. Life is truly what you choose to make of it. Perspective. Bad things happen. Difficulties can’t always be fixed. But joy can always be discovered in the mundane, in the daily grind, in the beating of a heart that simply refuses to stop.
I don’t know what tomorrow will bring. And neither do any of you. Some things fade away while others spring to life. Decisions come and go. And at the end of a day, at the end of a season, at the end of a journey, this I know to always be true. God simply knows best. My finite mind doesn’t begin to comprehend His plans or His reasoning. But trust is my armor. Salvation is my footing. Grace is my compass. Love is my guide.
If you care to read…..