Jul 8: Off Topic: Film Hacksaw Ridge

This ties in to seizures and being a caregiver. Read on.

I have a list of movies that I want to watch when I get a chance. It keep getting longer, despite me keeping a tablet or TV constantly running something. 

Tonight, while browsing a streaming service for a title off my 'someday' list, I noticed 'Hacksaw Ridge' was finally available in my price range. Free.

Started it up for the noise and background entertainment while I worked on Weslee's pills for the week. Have to admit: I had to keep pausing it because I was sobbing so hard that I couldn't see the pill bottles in front of me.

Got me thinking a lot about wars, killing, and death. Naturally, my never-quiet-mind went there.

My inner dialogue:

Me.1: We were taught that killing was wrong.

Me.2: True, but what about 'holy wars' and the 'crusades'?

Me.1: Maybe some killing is ok? Dad was in the military. So was my current husband, and my wonderful nephew who has PTSD.

Me.2: Can I reconcile that in my heart? In my soul?

Me.1: Peeta, a character from The Hunger Games, had a great line when asked .. "so you won't kill?"  He responds, "I'm sure I will, like anybody else".

..........

As a mom of an epileptic young man who came seconds away from death in 2019, I fight hard every day to keep him alive. Surgeries. Doc appointments. Medications. Raising money. Favorite treats. Movies. Books about writing to keep his mind active. A/C to get him comfy. Taking the tantrums on the chin. PTSD.

Don't ask me if I would kill to save him.

You might not like my answer.

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ETA: I realize this post sounded a bit harsh so let me say a few more things...

• I loved loved loved this movie. I have since watched it another 7-8 times, seen over 10 "first time watching .. reacting" YoupTube vids, and sobbed each time.
• I didn't have a problem with the killing, explosions, or the cruelty of the story. It depicts war, of course, and those are very much a part of war. I had a problem with the hypocrisy of christianity vs murder/killing.
• Andrew Garfield was the only actor possible for this role. I still get goosebumps when his character converses with God before he hears someone calling out for a medic, and thus began his "one more" scene.
• Vince Vaughn and the other cast members were also incredibly talented. I didn't spot even a smidge of overacting. Amazing considering how many background actors participated.
• Mel Gibson is a visionary.  I am very sure he heard about what this Mr. Doss did... then it sat and niggled and tickled his mind, practically fully formed.

OK. I think that's it for now.

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Weslee needs more brain surgeries for his seizures.  To help, please like, follow and share .. PLUS .. please go to his Medical GoFundMe or to our Paypal ... Thank you.

Apr 11: What is Epilepsy? Pt.1

Thought I would include daily (kinda) snippets about seizures and epilepsy. Here we go!

Most basic bit:

Epilepsy is a disorder in the brain and or central nervous system (neurological) that is marked by abrupt ongoing occurrences of sensory disturbance, convulsions, or loss of consciousness, associated with atypical electrical activity in the brain. This brain activity is abnormal, causing seizures or episodes of unusual sensations, behavior, and sometimes, loss of awareness.

It is the fourth most common disorder of the brain and affects people of any age.

Epilepsy is NOT contagious.

.....

Weslee had a rough seizure day yesterday. Started early in the morning, and lasted until about midnight tonight when he asked me for his rescue nasal spray. 

If you have been reading here, you know he HATES that med!

.....

Please help with Weslee's medical expenses. Click here.  Thank you

Appointment with Epilepsy Specialist

(Link Repaired)

My son, Weslee, is 27 years old, going on 12. We have autism, OCD, and uncontrolled epilepsy to thank for that.

If you follow me on any social media, you may know that Weslee's seizures haven't gotten any better, despite brain surgeries, medications, therapies, diets and the latest, a VNS device implanted. He has a lot of break-through seizures of different varieties, and all with no forewarning.

It's gotten to where he has a "safe place": his bed.  He feels (as do I) that if he is already in bed when he has a seizure, he won't fall down the stairs (again), or back into a door and put a hole in a wall (again) or hit the edge of the bathtub on his way down (again again and again).

Weslee in Emerg Dept after a seizure knocked him against the bathtub and floor. Nose broken. 

Weslee's local epilepsy doctor and team (he's had 3 or 4) have run out of suggestions, so they have recommended him to the Cleveland Clinic. He has an appointment there next month, but we need help getting there.

• My car won't make it there (no brakes, engine messed up). I will need to rent, get mine fixed (estimated to be over $5,000) or get a "new" vehicle (see below ps).
• Gas for vehicle.
• Hotel for first few nights for us both, then just for me if I can't stay in his room.
• Meals for us both, until he is admitted to a room, then just my meals.
• Hot spot because we will need a secure internet service, and I don't trust hospitals.
• Other incidentals, like getting him a new movie to watch, or anything else I need to get to keep him busy during his EMU (epilepsy monitoring unit) stay. 

So what do you say. Can you help us?

Help Weslee Get His Life Back: 

paypal.me/VIKKIWESLEELAWRENCE

Thanks.

p.s. Weslee and I are losing faith and find it hard to believe that we can't even mitigate some of his seizures. He is tired of all the medications. Of keeping an eye on the clock to take them at the right time. Of being afraid to walk down the stairs if I'm not around. Of falling and hitting his head or breaking his nose...again.  

He wants to get in a van and just start driving. To meet people he has talked to online. To take a "safe place" with him ... in the form of a special-built camper van.  Believe me... this is WAY down the line as we have to get through the Cleveland Clinic tests and so forth first. 

Gelastic Seizures

These 2 vids show just a tiny portion of dinner tonite.  Weslee's seizures have been increasing again, but as we were trying to eat (and watch WISH) tonight, these gelastic focal seizures occured about every 2-3 minutes.  

We finally gave up on both movie and dinner. He did get down a handful of raw baby carrots, some chicken fries, and choc pie.

He is now safely on his bed.  

And I am in my bed with a fresh dose of flu and cough medicine, praying his seizures will calm so we can actually get some sleep tonight.

(working on link for the other vid)

Delays and more Delays

I know I've been promising to do more for this website, but there have been so many delays. 

Not that I'm excusing this, but Weslee's seizures have increased quite a bit, he's been in the hospital a couple of times, emergency rooms couple of times, and his epileptologist is at a loss is what to do next. She will be presenting Weslee's case to a team of experts sometime this month, and hopefully they can come up with a plan. If not, they are going to refer him to John Hopkins or somewhere close by.

Welcome!

Thank you for visiting "ThatPurpleMom.com".  Started in September 2023, this little shop is the brainchild of Vikki Lawrence, a woman who has worn purple EVERY DAY since November 2013.  Even in the hospital for surgery, just puttering around the house, or casting new pieces in cement/plaster or resin, she has something on that is purple.  Usually ... head to toe!

Why does Vikki wear so much purple?  Thank you for wondering.  She is the mom of a special needs adult (chronologically 27, mentally/emotionally 12) who has intractable epilepsy along with autism, ADHD, OCD and a number of other problems.  Purple is the color of Epilepsy awareness.  

This shop should be functional by Sept 1 2024 (hope hope).  Please bookmark the site and come back.  Meanwhile, check out her ETSY shop at: www.etsy.com/shop/VikkiLawrenceShop .

EMU stay arranged

Weslee is scheduled for a hospital stay (the EMU ward ... Epilepsy Monitoring Unit) in May. So I started packing. Why so far in advance? Because he is also on the cancellation list. If someone cancels, we will get a call.

Testing will be from 3-5 days. As soon as he settles in, he will get into a hosp gown (his preference), they will put in an IV so they can administer emergency seizure meds when needed, and the tech comes in with the horribly stinky glue to attach the EEG leads to his head.

Then every time he starts a seizure, he (or more likely, I) will push a special button that marks the time in the recording (audio and video, plus the EEG readout) for analysis purposes. This also brings a nurse running.

They will try to induce seizures. They may or may not discontinue medications that evening, although they might wait a day or two. They also may or may not let him sleep that first night (sleep deprivation). They will also do other things that rarely work for him anymore, like flashing lights or blowing on a pinwheel to cause a lack of or reduced oxygen.

When they get enuf data (or when the insurance gives the directive), he is discharged, hopefully back on his meds for at least 24 hours.

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This is his 8th (?? 9th??) EMU visit so I know just what to take for the both of us. Two suitcases, one duffel, my purse and Weslee's murse. At the last minute, we will grab our electronics, charging cords, and pills to put in the purple suitcase.

Light at the end of the tunnel.

Well, a pinlight.

About Me and Us

 Hiya. Thanks for stopping by.

I am Vikki Lawrence, mom to a 26 year old (mentally and emotionally 11 years) autistic young man who has intractable (non-curable) epilepsy. Nearly everything I do is for him so get ready for me to mention Weslee a LOT.

Why am I called "THE PURPLE MOM"?  A cashier recently asked why I wear so much purple (all day, every day.).  After I explained, the next time I saw her, she called out "Hi there! It's the Purple Mom!" So, it stuck.

To promote epilepsy awareness, I have worn purple EVERY day since November 2013. Yes, every day! This includes hospital stays for which I wrote on my bod in purple "perm" marker because I had nothing on but a hospital gown. 

Having purple somewhere on my body every day since 2013 has served a purpose. People who see me on a regular basis (and even others) often stop me to ask why I wear so much purple. Clothing, purses, coolers, jewelry, luggage, face mask, etc.

To queries about my color choice, I briefly explain my son's epilepsy journey, and how it all began with an overwhelming amount of deja vu episodes, for which every doctor ridiculed me about. "It's nothing", they would tell me. "Stop being such a worrier."

It wasn't until he had his first BIG seizure (tonic clonic aka grand mal) that an Emergency Department doc told me his multiple deja vu episodes were actually simple partial seizures. Finally an answer!

I wrote about our journey in my book, "Epilepsy: One Mother's Perspective".

(More to come.)

I hope you bookmark this page and check back often.  Enjoy!