Monthly Archives: June 2016

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

My Kind of RARE

Loving someone who is RARE is a precious honor. I am thankful God has given me the privilege to love 2 special RARE people in this life. This RARE condition is a Chromosome and Neurological Disorder called L1 Syndrome.

Category: Disability, L1syndrome, Siblings, Same Diagnosis, Special Needs, L1Syndrome

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! I am ready to get past all the medical… Read More

Category: Disability, L1syndrome, Faith, Hardship, Special Needs, L1Syndrome