“Mitch, Jessica is not responding to me! Her lips are a blueish tint and… OMG! I think she is having a seizure!”

“Brave doesn’t mean you’re not scared. It means you go on even though you’re scared.“

Angie Thomas, The Hate U Give

Seizures

Everything hits me at once – is this the day the seizure will win? Will Jess be able to get enough oxygen? Will this be the seizure that doesn’t end quickly? And how much I hate F!@#$%^ seizures!

Jessica is unable to communicate with words, even when she is not in the midst of a seizure. Oh, how scared she must feel, and she will never be able to tell us.

Bravery

I want to run ~ Out of the room…Out of the house… And come back when the seizure is over and Jessica is well.

But, of course, I can’t. I wish I could say my fear encouraged bravery. However, my fear encouraged more fear.

Jessica’s dad, Mitch, my husband, is the brave one in this scenario. He is also fearful for Jess and, unfortunately, needs to manage me, as well.

Mitch tells me,”Call 911.” After that, he says, “Go upstairs and get supplies for our trip to the ER.”

An emergency call graphic featuring bold, red text labeled 'EMERGENCY CALL' against a blurred night city background with emergency vehicle lights.

He is taking me out of that room ~ giving me the steps that I need to collect myself and find my bravery.

Once the ambulance arrives, I am brave~ I am brave as we travel to the hospital speeding down the roads. I am brave when we sit in the ER exam room, as Jessica slowly wakes up… as Jess becomes herself once again.

Jessica

The true brave person in our story that happened more than once and more than twenty years ago is our daughter Jessica. No matter what hardships she has~ she overcomes them and starts again.

Bravery isn’t always loud. Sometimes it’s Mitch calmly telling me, “Call 911… go get supplies.” Sometimes it’s me holding it together in the ambulance. And most of all, it’s Jessica—our daughter—who faced the unimaginable every single time.

Mitch

Bravery
1984 and 2022 (Mitch and I haven’t changed a bit! 😉)

Bravo our brave daughter and thank you Mitch for the numerous times you helped me find bravery.

As I write the following words, my superstitious self is yelling at me, “STOP!!!!!,” and I hope that I am not putting a whammy on our luck. Jessica’s seizures “appear” (maybe using that word helps with superstition 😉) to be under control with medication. Perhaps, at age 43, other metabolic changes have occurred. So we hope and pray that Jess remains on this path.

Have you had a moment of bravery in a time of crisis?

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Have you read Raising Jess: A Story of Hope? I’d love to join your book club—for an engaging, heartfelt discussion.

We can discuss the real-life moments behind the pages, including parenting a child with a rare chromosome deletion, the challenges and joys our family has faced, and the journey that inspired the book. Message me here or write to vickierubinauthor@gmail.com to set it up.

For an inspiring stories about Raising a Child with a Rare Chromosome Deletion, check out 3-time award-winning memoir,  Raising Jess: A Story of Hope!

Disability & Family Life Parenting