I met Tonya Galle and Chuck Latham in 1980 in Ms. Richard’s class at Our Lady of Perpetual Help School in Belle Chasse, Louisiana. Tonya and I were immediately best friends. And Chuckie…..well, he is my first love. Lura Menard and I clicked in 1990 in Coach Lewis’ PE class at Belle Chasse High School sophomore year, we’ve been inseparable since.
Although we’ve lived in different states and towns for the last thirty years, these are the friends who’d help you bury a body and take the secret to their own grave. The friends who’d drop everything and fly to your rescue. The friends who would raise your children if anything ever happened to you.
There is no one on the planet I’d rather have than these roll dawgs.
Rosebud aka Stew
In November, we were optimistic that Mac’s EEG only showed one brief absence seizure trigger by photosensitive (flashing) lights. Unfortunately, on our way back from Louisiana (Dec 30th), Mac had tonic-clonic (grand mal) seizure. It was terrifying and treated at the ER. We believe, and his neurologist agreed, the bright sun flashing through the tree line on the interstate triggered the seizure while we were driving.
Today we saw his neurologist for prognosis & treatment. Statically speaking, tonic-clonic seizures are a typical phase of generalized epilepsy once a person with absence seizures reaches puberty. Mac started puberty in January 2019. At this time, you will slowly see a decrease in absence seizures, and tonic-clonic episodes will begin to manifest.
His neurologist reassured us tonic-clonic seizures were treatable with medication, and we had lots of options to choose from to find the right cocktail for Mac. He was hopeful that Mac only had one tonic-clonic since the 30th. We immediately took measures (blue-tinted glasses inside and dark sunglasses outside) to eliminate triggers and prevention.
Mac will be starting Zonegran today for the tonic-clonic seizures and maintaining all his other medications at present levels. We are continuing the Charlotte’s Web CBD oil because the benefits outweigh the cost. Hopefully, one day the FDA will change the required diagnosis for Epidiolex, and we can finally get that prescription filled 🤷🏻♀️.
In a nutshell, Mac is in the next phase of generalized epilepsy, and our mission is to medicate, treat, and take all measures to prevent any more seizures.
Thanks for the continued support, thoughts, and prayers for Mac and our family ❤️.
Elizabeth Wurtzel died of breast cancer yesterday. Her book Prozac Nation blew my mind at 20. Through her writing, I realized I too suffered from depression. One of her essays was re-published in honor of her work. I thought it was worth sharing.
“The best people are the ones you have to forgive for everything. You have no choice; it would be worse to live without them.” -Elizabeth Wurtzel
Outside our front door.
Last week Mac’s teacher text me because he was having a rough morning.
I immediately knew the culprit because I questioned the red shirt I chose for him that morning.
Thankfully all those color theory classes I took are still paying off, especially as a mom to an Autistic child who senses and experiences things 900 times more than neurotypical children.
My BFF from college, Anita, recently had a baby girl. Anita is an incredible, compassionate woman who loves all living things and is respectful of Mother Earth. She makes such an impression on all those she touches want to be a better human being.
Anita and her husband, James, are first-generation Americans. Their McDesi union created this amazing little girl. I wanted to make something for her that represented and honored the heritage of her mom and dad. The design is an Irish Chain with the green representing James’ Irish lineage, and the purple represents Anita’s Indian lineage.
I hope Arya will treasure it, because it is the only quilt I will ever make.
Because Autism parents rarely experience it, I wanted to share Mac’s recent neuro-typical 12 year old boy behavior. We put up a little family pool in the back for him to cool off in the afternoons. I’ve been getting in with him and practicing putting his head back to wet his hair to get him more comfortable with the water. 99% of the time all he wants to do is spit water at me and giggle. Obviously this isn’t appropriate behavior, so I am trying to curb it as much as I can. However, when I see his silliness and engaging in what I know typical 12 year old boys do, I can’t help but smile ☺️🧩