Caregiving requires sacrificing the freedoms that most families take for granted. You lose the ability to simply do what you want, when you want—whether that’s deciding how to spend the next hour or planning a family vacation.
Being a caregiver has caused our hearts to grow three sizes. It gives me the chance to show the depth of my love for Jackson, and it puts into perspective what truly matters in life.
We cannot let Jackson out of our sight—ever. We have to intervene or assist him constantly, so there is no freedom. During his waking hours, everything else is pushed to the side. Oftentimes only the critical things get done.
What do I wish others knew about caregiving? It is the constant physical care and the mental load that revolves entirely around his needs. Because of this, we often have to say ‘no’ to our other two children. Guilt and sadness are frequent parts of our reality.
-Written and submitted by: Jackson’s Mom, Jeannie
Powering Breakthroughs: Tackling The 3 Grand Challenges in LGS
Every family living with Lennox‑Gastaut Syndrome knows how hard this journey can be—and how deeply we all dream of better answers and brighter days. That’s why the LGS Foundation is taking on the biggest barriers standing between families and a better future. This research initiative brings families, researchers, and care teams together to move us from seizures to full lives through precision diagnoses, precision treatments, and whole‑life care.
Updated 02/18/26 (AM)