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When you wake…..

I will probably never understand Seizures. Every time Brandon had one, It would throw him back into learning what he had just learned. It broke my heart to see him in such distress when I couldn’t do anything about it. He would be unconscious for days.

Category: Disability, L1syndrome, Hospitalization, Seizures Tags: #globalgenes, #hydrocephalusawareness, #l1cam, #l1strong, anxiety, awareness, Chromosomes, death, depression, diagnosis, disability, Encouragement, Epilepsy, Faith, genetics, Grieving, Hardship, Heaven, Hope, Hydrocephalus, life, Love, love of a child, Mom, PTSD, Seizures, Special Needs, stress, surviving, thriving, X-linked

Thankful

As this years 2014 Thanksgiving rolls around, my mind drifts throughout each day of how thankful I am. There are so many things that have come my way and so many people in and out of my life that have meant so much to me and that I am thankful for.

Category: Faith, Parenting, Thankfulness Tags: #globalgenes, #hydrocephalusawareness, #l1cam, #l1strong, #thankful, awareness, better me, Chromosomes, diagnosis, disability, Encouragement, Faith, family, friendships, fun times, genetics, Grieving, Hardship, Heaven, Hope, Hydrocephalus, Joy, Laughter, life, living, Love, love of a child, Mom, Special Needs, stress, surviving, thriving

The Day I told him “I’ll see you again”

This guy right here made me the mom I am today. With multiple brain surgeries, feeding tubes, feeding pumps, hip surgery, multiple tendon releases in each leg and foot, (VNS) Vagus Nerve surgery, 2 spinal infusions, surgery on each thumb (inward thumb/visibility of L1 syndrome), Budd-Chiari Syndrome, and numerous seizures that more than 50% of them were life threatening. He was on life support during those times. I can truly say that this child… Read More

Category: Uncategorized Tags: #l1cam, #l1strong, anxiety, death, diagnosis, Faith, Grieving, Hardship, Heaven, Hope, Hydrocephalus, life, Love, love of a child, sick, Special Needs