Archives

God’s Plan

Today has been another “ok” day. Brent is so ready to get back in the swing of things with going to school and doing his routine. He loves a schedule and if it gets off track, he does not like it. He is thriving and I am so happy for him that he is still fighting his disability He is one tough teenager!

Category: Uncategorized Tags: anxiety, better me, depression, Faith, Hardship, living, Love, love of a child, Mom, PTSD, surviving, thriving

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

Mixed Emotions

I ask myself these questions from time to time now. How does one celebrate for one child and still continue to mourn the loss of another child? Can I be still be happy for the one I still have here with me? Will this sadness linger on forever?

Category: Faith, Loss, Death of a child Tags: #globalgenes, #hydrocephalusawareness, #l1cam, #l1strong, anxiety, awareness, death, depression, diagnosis, disability, Encouragement, Faith, family, genetics, Grieving, Hardship, Hope, Hydrocephalus, life, living, Love, love of a child, Mom, PTSD, Special Needs, stress, surviving, thriving, X-linked

L1 Family

I never thought I would see the day of being able to meet other families that walk in my shoes daily. For so long I begged and pleaded with God to help me find someone…surely I can’t be the only one in the world?

Category: Disability, L1syndrome, L1 Families, L1 Syndrome, Parenting, Special Needs, L1Syndrome, Uncategorized Tags: #globalgenes, #hydrocephalusawareness, #l1cam, #l1strong, #thankful, awareness, better me, Chromosomes, diagnosis, disability, Encouragement, Faith, family, friendships, fun times, genetics, Hope, Hydrocephalus, Joy, Laughter, life, living, Love, love of a child, Mom, Mommy Time, PTSD, Seizures, sick, Special Needs, surviving, thriving, X-linked

Keeping the Faith

Tonight, I sit here thinking of all the what if’s, what could have been’s, and I don’t know why I allow my mind to go in that direction. Brent is 15 years old. He should have a permit and learning how to drive. He should have friend’s over spending the night, coming and going and having a busy schedule of some kind.

Category: Faith, Uncategorized Tags: #l1cam, #l1strong, anxiety, awareness, Chromosomes, Encouragement, Faith, family, Hardship, Hope, Hydrocephalus, life, Love, PTSD, sick, Special Needs, stress, surviving, thriving, X-linked