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To be honest, I am terrified. I am constantly carrying the worry that my child is going to die. When he has the aggressive and prolonged seizures like tonight I think “Is this it?”.

I know it isn't healthy and I know it’s also normal. I have to work hard to remain positive so that I don’t end up an anxious mess. I have to keep my cool so I can remain in control for Sawyer.

Our night was like any other. We got both kids in bed, my husband headed to the gym and I climbed in bed to relax. I played on my phone like any other night for too long and decided I needed to put it down and turn on my monitor.

Typically, when Sawyer is sleeping we don’t hear much other than his ocean sounds on his echo. Tonight when I turned it on I heard snorting. When I looked at the monitor he didn’t look quite right. I rushed into the room to see if he was responsive.

I immediately knew it was a seizure.

I called my husband and told him to come home, called my neighbor to come over and called 911. I administered his rescue meds and waited.

My cool calm and collected neighbor watched for my husband, handed me things as I needed and let all the police, fire and EMTs in the door. She was a Godsend. She helped keep me calm and I quietly took charge of what was necessary. I can’t imagine being totally alone in that situation.

Once they arrived I felt as though I could breathe again. I knew that whatever happened I had professionals around me. Sawyer’s seizures are extremely hard to detect so I had to explain that he was still seizing and these professionals looked to me for guidance.

Each time he has a seizure I look back and think of what I could do differently, and I wish I had administered the second rescue med when the ambulance was on its way. If I had, he may not have needed to be bagged and gone on so much oxygen but who knows.

Each time he has an event like this I relive the days in the NICU where he almost didn’t make it.

The emotions and feelings come rushing back. I often question why he has to go through all he does. Why does he have to have gotten so sick? What did I do to deserve to have a child that I have watched suffer on multiple occasions? It’s hard not to go into my dark hole, but I don’t, because he needs me.

Finally, tonight, I was walking into the gas station to get some popcorn I had promised to bring home from the hospital. I thought to myself: “I look awful. My hair is dirty and my clothes are disheveled. I have bags and dark circles under my eyes.”

People may look and see a disheveled lady and automatically judge (yes, I think my shirt was see through) or they can look deeper with empathy and choose to smile.

We need more empathy in this world. We need more people who instead of judging immediately, choose to understand what it feels like to be that person and respond with kindness. Choose Empathy.

Firefly Blog

Real life stories, issues and experiences of day to day life by special needs parents and
healthcare professionals.

Francie Khalaf

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I am a wife and mother of two children with cerebral palsy. I believe in making lemonade out of lemons.

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