Last Mother’s Day, I found myself in a place of profound sadness and despair. The night before Mother’s Day, our son experienced a seizure, and despite administering his rescue medication, it failed to bring relief, resulting in a grand mal seizure, the most severe I...

Last week we celebrated Sylas’ 9th birthday. And it was such a special moment for him and for me, as his mom and caregiver. For the very first time, Sylas had a birthday party with HIS friends! No family members. And no children of close friends that he’s not really...

May 23rd, 2023 was a day of frustration and despair for me. The unpredictable nature of seizures has left me feeling helpless and overwhelmed. My son has been battling seizures for the past two years, and just when I thought we...

Mother’s Day is a day that holds the promise of joy and beautiful memories, but life often surprises us with unexpected challenges. This year, our Mother’s Day took an unforeseen turn as fear and helplessness filled the air in our family room. Instead of enjoying the...

In this post, I want to take you on a journey through my life as a married woman with three children, two older girls and a boy, focusing on the period before and after my son’s Kleefstra syndrome diagnosis, the unexpected twists and turns of his health, specifically...

Dear readers, I am excited to share my first blog post with you, and I hope it helps shed some light on what it’s like to raise a child with Kleefstra syndrome. Our journey with my son’s diagnosis started when he was about 5 months old. I noticed that he wasn’t...