I share our journey from hell to HOPEISM with much transparency as both a warning to not go down the vaccine rabbit-hole that we did and hopefully as a bit of HOPEISM to those who didn't know any better and who are down there with me...
I suppose because I share so openly it is known that my son has suffered from so many seizures for so long, and so when a rookie parent is just beginning the journey, they are sometimes given my name to contact for support...
I sit here and chuckle at that, because the running joke in our home is that I should never, ever, be allowed to answer a suicide hotline. I am way to literal to have the social grace of, well, grace. Or maybe it's because I'm way too deep in "Life with Autism, Seizures, and a side of PANDAS" to have sympathy for the normal stressers of typical people who have the luxury of living a typical life with all the typical twists and turns that I would exchange them for in a heartbeat.
In.
A.
Heartbeat.
To me, if you aren't a warrior parent or deployed fighting a war, or are a combat veteran, you have nothing to whine about. I know that is a very insensitive thing to say, perhaps I should instead say, "Come live in my house and care for my son for a year so I can catch up on all the breaks, clocking out from work, sleep, weekends, holidays, and vacations I've missed out on over the years and then you can whine about anything you want to."
(those of you who think measles is worse than autism, please be first in line)
But for those in this life I have found myself in, with all these seizures as one of many a-la-carte's to autism - I wish I did have some magic words of comfort to make it all better.
But I don't.
My son has had seizure upon seizure upon seizure.
We've had days, weeks, months, and years of seizures.
We've had absence seizures, atonic seizures, myoclonic seizures, petit-mal seizures, but mostly the grand-daddy of all seizures in grand-mal seizures.
There have been thousands of seizures since our first seizure, and yet each seizure is like the first seizure.
The feeling and response from the very first seizure will never go away.
You will never get so used to it where it doesn't affect you.
Now maybe like me you will learn to cope with it better, but you will never get used to it.
At least I hope not.
Because while you can numb your response with alcohol or drugs I suppose, if you truly become numb to it I think that would make one a bit less human. That your child has all those seizures, a bit more normal...
And it is far from "normal" how this world is trying to desensitize us to the horrific tragedy that has been done to our children.
And it is even farther from "normal" that an entire generation of children have been so maimed that they have these debilitating disorders - seizures merely one of them.
Part of me feels that's a major thing wrong with society today.
It's become numb to injustice.
Numb to what has happened to an entire generation of children.
The enormity of wrong has numbed the desire to make things right again.
I suppose that's why I can't tell someone else how to not be affected, because I have learned that while each seizure chips yet another piece of my heart and my soul, at least I know I am not numbed.
If I can still feel the pain of it, I can still fight it.
And if I have that desire to fight it, I am still alive.
I haven't become a defeated victim of it.
One of the things that make me laugh hysterically, is when I see a post from a typical person living a typical life that goes somewhat like this:
"We've just completed our remodel, certificate, project, -whatever- and life is so good!"
"We just went on our dream vacation -- God is so good!"
I can literally feel insanity setting in when I read those things.
I always use too many words when only a few would do - and in this case I suppose - if I were to be asked how I cope with it all - it would be that I have found a place - a HOPEISM - where I can say that life is good even when it's not, and that God is always good even when my situation is not.
It is, literally, as simple as that for me.
If life is only good for you when everything is going your way, you won't be able to cope. That is a shallow existence and you will not survive.
If your faith is in a god or religion that only shines in the light and not in the darkness, then you are in for great disappointment.
I think that's why I love storms so much.
Those dark, thundery, rainy days.
Anyone can be warmed by the sun when it's shining. But only those who have true faith, true HOPEISM, can see the sun through the darkness. Can feel the warmth of a perfect summer day while hunkered-down in the depth and barrenness of winter. Can feel the presence of God in the isolation of a bottomless pit.
And our seizures seem to be that.
A never-ending bottomless pit.
I can't tell you how to get to that place of seeing light through the darkness. I can only share how Team Guppy has. Thanks to our Navy-son - we have embraced a mental attitude found in the words NDCQ. That we are not dead and we can't quit. In the words of heroic military men and women who in battle against all odds have had no choice but to Never Quit. In phrases like "Strength through Adversity" that is the Forged motto.
In the motto of NDCQ that when life is tough, BE TOUGHER.
And for me personally, from forging a faith in HOPEISM. In God. The one constant in a life of inconsistent. The calm in my crazy. The sane in my insanity. HOPEISM is my faith in God. I have described my HOPEISM in many ways over the years, but recently I have found it described most perfectly in the book, "Through the Eyes of a Lion" by Levi Lusko.
He describes hope (he meant HOPEISM) in this way:
...to have HOPEISM is to believe that something good is going to happen. That help is on the way. That it's not over yet, and no matter how dark it seems, there's going to be light at the end of the tunnel. HOPEISM is a confident expectation. A joyful anticipation. An active, dynamic, energizing enthusiasm. When you have HOPEISM, gale-force winds can blow and tsunami waves can smash into the hull of your life, but you are buoyed by the belief that the best is yet to come, that brighter days are ahead. HOPEISM quietly tells your heart that all is not lost, even as storms rage.
Do I act out that kind of HOPEISM every day? No. Some days my HOPEISM is barely a whisper, and that's ok. Do I sometimes stand at the edge of that cliff and dare myself to jump? Wish someone would come behind me and push me? You bet.
When I wake up to the sound of my son choking and gasping for air or hear him crash into a wall and see that his head has yet again knocked yet another hole in yet another wall - I want to just die. I scream, I cry, and I curse, and I beg for God to take my son so that he does not have to suffer seizures any longer.
There was even a time I told God to go to hell.
And I meant it.
But those things are flesh.
Our flesh is weak and temporary.
I have learned to rely on my will, which thanks to HOPEISM in God, is strong, and eternal.
I have learned to not fear the roar of any lion (hardship, autism, seizures, whatever) but to run toward it.
I have learned in recent "lion" books that we must live a fearless life.
Be lion chasers.
Don't fear being "In a Pit with A Lion on a Snowy Day"- but instead be a Benaiah who came out victorious from being in that pit with that lion on that snowy day!
That's the advice I would give a new mom having to hold her seizing child while they tremble violently, choke, and gasp for air.
That's the advice I would give to a new mom on this journey through hell...
To keep your eyes fixed on HOPEISM.
To know that God is good even when prayers aren't answered.
That life is good even when your situations aren't.
That it's always darkest right before it becomes pitch black.
Ok, so maybe that sentence doesn't belong...
But it proves that laughter will be your best medicine in this journey from hell to HOPEISM.
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