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Being Accepted

It has been 20 years since I have been out of school and nothing has changed about Special Needs… I will probably make some people upset but ya know, it does hurt to know that special needs children are left out of everything. The only thing they get to look forward to is Special Olympics that happens once a year. There should be more structure and involvement within the school system and… Read More

Category: Acceptance Tags: #globalgenes, #hydrocephalusawareness, #l1cam, #l1strong, anxiety, awareness, better me, Chromosomes, death, depression, diagnosis, disability, Encouragement, Faith, family, friendships, genetics, Grieving, Hardship, Hope, Hydrocephalus, Joy, life, living, Love, love of a child, Mom, Special Needs, 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

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

Understanding Grief When Your Child Dies

When your child dies, the pain and devastation of your loss can feel overwhelming. Some of the immediate emotions in grief are shock, numbness, denial, confusion and disbelief, all of which can act as a cushion against the full impact of your loss.

Category: Loss, Death of a child, Uncategorized Tags: Grieving

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