I know they mean well. People. They ask.
But the holiday season just ended and I.am.exhausted. Mentally, not physically. Emotionally.
My son has significant health issues. He’s medically complex.
I talk about his issues often on the blog and in life. I posted our GoFundMe that we needed help with prior to his brain surgery.
In 2018 he had his first brain surgery. I allowed a neurosurgeon to drill 12 holes into my firstborn’s skull, just so that we could gather data about the origin of his seizures.
In 2019, I allowed, in fact, begged, that same neurosurgeon to remove a portion of my son’s skull so that a foreign device could be implanted that would reduce his seizures.
His daytime seizures are more than 99% gone.
It’s the nighttime ones that I worry about. Mostly because of SUDEP.
For the daytime seizures, I worry about keeping him safe. For the nighttime seizures, I worry about keeping him alive.
But, it’s leveled off. And that’s a good thing.
So now we get to focus on his many other issues. Issues that we couldn’t even give attention to because all we did was manage hundreds of seizures a day. Yay! Onward! I couldn’t wait.
That focus turned in to a whole new world of worriment.
Over Thanksgiving break, he had 4 medical appointments. Including an overnight sleep study at AI Dupont, and dentistry (with anesthesia) at St. Christopher’s Hospital for Children. That was our Thanksgiving weekend–spent in 4 different hospitals and medical centers.
During Christmas break, he had 2 more. Because, you know, medically complex.
And I’m overwhelmed. We have two huge issues to conquer now. Eating and sleeping.
Two things that are essential to life. Without them, he has more seizures. Without proper nutrition, hydration and sleep, he regresses.
Oh, the regression. It’s so painful to watch.
So I march on. More appointments, more tests. Next week he misses two more days of school. For more testing, more appointments, more hope that this will be solved with the next appointment.
It never is.
So, please forgive.
Forgive me, when you ask me at social gatherings (which the holidays are full of) how my son is.
Because I lie to you.
“He’s fine. Doing much better, thank you for asking.”
He’s not doing better. Seizures are better, yes, and that is a huge relief for us. But sleeping and eating are essential for life. He needs those as much as he needs to not have seizures.
I lie to you because, in November and December, we had 12 different medical appointments. All I do is talk about my son’s health.
It’s the same stories and anecdotes, over and over, just to different specialists. And then I have to come home and reiterate it all to his dad, of course. Thank god my MIL attends most appointments with me. She gets to do some of the retellings and I can’t thank her enough for it.
Chronic Traumatic Stress Disorder. I made it up. I’m going to wage a one-mom campaign to have it added to the DSM.
I have PTSD from my son’s seizures. I also am self-diagnosed with CTSD. Chronic. I’m never ‘post.’ Oh, how I would love to be ‘post.’ Please, please get me to post.
How do you get to ‘post’ when you have to relive and retell the same bad things, over and over and over?
So I lie. Because standing there sipping egg nog, I don’t want to tell it again. I’d like to try and enjoy this party if you don’t mind.
I know you mean well. I know you care, really I do. I just don’t have the energy to go through it all one more time, standing here with you. There are so few days in the month that I don’t have to tell his story.
But my worst fears, my son’s health, I have to talk about the worst parts of my worst fears, day in day out. Sometimes once I start talking, I can’t stop. It just keeps going.
“As long as it’s healthy!” we say. Right? We don’t care, boy, girl, whatever. Just healthy.
I just want healthy for him. He has to walk around every day not feeling up to par. A permanent condition of constantly being hangry and sleep-deprived. Imagine how that feels for him.
So I lie.
On top of all these worries, parents like me live every day in fear that our health care will be taken away. This is a real possibility and a real fear for millions of families like mine.
CTSD. It exists. We’re chronic, never post.
Hugs to all the kids and parents out there who don’t have a blog to do a brain dump as-needed therapy. Feel free to leave a comment.
Latest posts by Lisa Lightner
- Why IEP Parents Should Never Agree to the “Let’s just Wait and See.” - January 21, 2020
- Can a Parent Refuse Special Education Services? What happens next? - January 20, 2020
- IEP School Refusal | Why it should be Number One Priority for All Schools. - January 19, 2020