Isolation Irony

Rose is home from college due to the COVID-19 pandemic.

So instead of being isolated by her epilepsy, she is now isolated by an outside disease.

My dad is under “lockdown” ( due to COVID-19 ) in the rehab center following a cancer surgery in December.

So he is now in there alone without us to care for his many needs.

All this isolation to prevent the spread of an invisible foe.

I hope and pray we miss this new and vicious virus.

On the other hand I feel in my element.

I have been studying diseases for decades.

Oh, if only I could jump into the fray instead of sitting here alone

educated and isolated.

Everybody’s Mama

 

 

Book for EMU Prep

If your child is going to spend some time in an Epilepsy Monitoring Unit, you might use this book to prepare them for their stay.

All the wires, monitors and other equipment might be a little scary.

This book was written by a young man who wanted to share his lessons learned in an EMU to help others get through this testing experience.

All Eyes on Me by L. Brandon Magoni is clearly written and includes photographs.

IMG_1373

I think this book would be useful to keep on hand at neurologists offices and epilepsy centers.

Good job here Brandon Magoni.

 

Parameters

I want to send a message straight from my “mama heart” to yours.

It’s about knowing what you can do and what you cannot do.

There are better tests, treatments and therapies now. Keep searching for the right ones.

Everyone’s epilepsy is different.  You have access to more information and support.

You cannot do everything. You cannot fix everything. You cannot be everything.

Guilt is toxic. Depression is damaging. Exhaustion is depleting.

Trust yourself to do your best. That is all you can do.

Be kind to your frazzled self.

Look for tiny bits of joy everywhere.

Pause to ponder and wonder.

Protect yourself and rest.

Your fragile child needs you.

Take care of you, too.

I know your pain.

Flower

 

 

 

 

 

Seizure Mama and Rose made it to the Best New Epilepsy Books
I’m happy to announce that my book, “Seizure Mama and Rose: An Epilepsy Memoir”, made it to BookAuthority’s Best New Epilepsy Books:
https://bookauthority.org/books/new-epilepsy-books?t=d39069&s=award&book=167081114X
BookAuthority collects and ranks the best books in the world, and it is a great honor to get this kind of recognition. Thank you for all your support!
The book is available for purchase on Amazon.

Tethered Together

A tether is a connection of a mobile thing to an immobile thing

to limit the movement of the movable part of the pair.

The irony of this description is not lost on me.

Rose was prevented from flying away and I was immobile.

I am the heavy, the anchor, the immovable.

Who wants a heavy, immovable mother?

Who wants to be heavy and immovable?

Maybe I have been looking at this the wrong way.

I want to move, too. I want to fly, too.

I am still stationary long after my Rose bird has flown.

I am still here holding down an empty fort.

I am still here.

Still tethered by fear and habit and age.

I need to rise up. I need to look up.

I need to be free from the hanging, empty tether.

Free to be me.

Free

 

A Seizure Dog Sees Rose.

Story 38:

One afternoon, Rose and I were shopping in a large department store. Rose was several yards away from me between the clothes racks. I could see the top of her head. I saw her head turn to look at two people and a dog strolling through the aisle in her direction. I knew she had spotted the dog’s service vest. I also knew that she would be interested in watching the dog at work.
The big, shaggy hound was wearing a red triangular vest on its harness. The vest was a sign that the dog was a service dog of some sort. Our family had discussed the possibility of getting a seizure dog several times. Since Rose had no aura before most of her seizures, having a dog that could alert her that a seizure was coming would be a nice warning. Rose could at least get to the floor before falling down.
Rose watched the dog approach. The two adults were deep in conversation. They were paying attention to each other and not the dog. The dog turned and walked away from the two people until it stopped and stood in front of Rose. I watched as my daughter and this dog looked into each others eyes.
Both men were surprised by the dog’s behavior. One of the men pulled on the dog’s retractable leash and gave a command for it to return to the side of the other adult. The dog hesitated to leave Rose, and paused for a few more seconds before rejoining his human companions.
I spoke to the two people. I told them that Rose had epilepsy. Their looks of dismay turned into smiles. This gentle giant of a dog was a seizure dog in training. What they first thought of as bad behavior now took on a different meaning. The dog was a seizure alert dog. It somehow knew that Rose had epilepsy. His name was Mr. Biggles. He was with his trainer and new owner.
I got the name and number of the company that trained the dog. The threesome continued to slowly stroll around the store. Rose and I looked at each other in wonder. “How did he know?” she asked me.
It was my turn to be concerned. My first thought was that maybe he sensed an oncoming seizure, but I told Rose that possibly he could smell the seizure medications in her sweat.
Either way, I had a new hope for Rose. Maybe someday a dog could help to keep her safe.

Seizure Mama speaks to parents:

We have not gotten a seizure dog for Rose during these twenty-four years. We had other dogs while she was growing up, which would have complicated the training of a companion pet. We did seriously consider a seizure dog during the times when her seizures were frequent. A trained seizure dog can be very expensive.
I did talk to a woman from this company about training a dog for Rose. She said that the dog must be trained while the companion person is having seizures. Rose’s seizures had become so infrequent that it would not be possible to train a dog for her. This was a mixed blessing.
Now that Rose is an adult, she may need a service dog just for protection. She goes places by herself. She is very independent. Several weeks ago, Rose had a seizure while away at college. It was at night while she was walking beside a road. A dog could have at least stopped traffic.

I am re-posting this in honor of a friend who is beginning the SERVICE DOG application process. I hope he will be blessed with the perfect dog.

Everybody’s Mama