• Skip to primary navigation
  • Skip to main content
  • Skip to footer
Logo
  • Home
  • Understanding KCNT1
  • Parents & Caregivers
    • Newly Diagnosed
    • Early-Onset KCNT1 Epilepsies
      • Medications for Early-Onset Epilepsies
    • Sleep-Related Hypermotor Epilepsy (SHE)
    • Symptoms & Treatments Overview
    • Treatment Approaches
    • Genetics 101
    • Life Expectancy & Long-Term Planning  
    • Financial & Caregiving Tools
    • Support & Resources
    • Sign Up for Our Parent Contact Form
    • Share Your KCNT1 Story
    • Find a Doctor
    • World Map (Census)
  • Professionals
    • Clinicians
    • Industry
    • Researchers
      • Biospecimens
      • KCNT1 Funding
      • Publications
  • Research & Clinical Trials
    • Parents & Caregivers
    • Clinical Trials
    • Clinical Trial Educational Resources
  • Support Us
    • Get Involved
    • Ways to Give
      • Shop our Store
      • Host a Fundraiser
  • About Us
    • Our Mission
    • Our Team
    • Our Advisors
    • Our Approach
    • Our Partners
    • Our Families
  • News & Events
    • FDA Patient Session
    • KCNT1 Remembering Day: October 21
    • News
    • Newsletter
    • KCNT1 in Orlando
    • Past Conferences
      • KCNT1 Anaheim Family Conf
      • Million Dollar Bike Ride
  • Contact
  • D♡nate

Meet Jack

Jack Stone McIntosh

July 26, 2017 – August 24, 2023

Two boys still need their Mom

by Jen McIntosh

I miss him so much

my heart is broken

my soul feels empty

Two boys still need their Mom 

But, it used to be three.

Now, bedtime is quick

It feels too easy

No more monitors beeping

No sounds to hear

Check your watch, don’t be late

medicine, feeds, medicine, feeds

Do not wonder your gaze away

Seizure, seizure, seizure 

Sleepless nights and long days

Feels like I’ve been left a stray 

Our trip to Holland is over now

My tour guide has laid to rest

No tulips or windmills to see

No more epilepsy 

His wheelchair has been staring at me

Where is my identity?

I miss my son

He just turned 6

He’s gone too soon

Oh hey, look, another full Moon

No seizures tonight

He’s running free, always resting peacefully

No more pain, no more SATs to track

But, these boys still need their Mom 

No oxygen, suction, medication to pack

Out the door at the drop of a hat

A whole new pace

It feels too easy

But, I don’t feel whole 

Jacks not here

He was the lighthouse during the storm 

Our home is icy

Our hearts feels cold 

Will this be our new norm?

How do you explain heaven to a four year old?

He lost his best friend 

This feels like too much to bear 

It’s so quiet

Will my tears ever mend?

This does not feel real

Can’t go in his room

Medical equipment in every place

No monitors beeping 

No sounds to hear 

Every corner, another memory 

But, two boys still need their Mom

How do I break without a shatter?

What I’d give for one more hug

Beautiful blue eyes looking at me

As I bend my knee and pray 

PTSD, please leave me be

Two boys still need their Mom

Please, Lord, please protect me 

I miss him so much 

My heart is broken

My soul feels empty

I will stay strong

I will keep my faith

Because two boys still need their mom 

Written by: Jennifer McIntosh 

Give in memory of Jack

Footer

fluid-image
Donate Today
  • Parents & Caregivers
  • Researchers & Professionals
  • About Us
  • Contact
  • Subscribe
Gold 2025 Candid Seal
GAA Member Badge
Citizen Health Proud Partner 2025 Website Badge

Privacy Policy

© 2023 KCNT1 Epilepsy Foundation | All Rights Reserved | Disclaimer

EIN 84-2748218

Copyright © 2026