Archives

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

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

Keep Holding On…

As I look back at these posts that I wrote before I started blogging, I see how scary things were. I never got scared “in the moment” of an episode. I would always hold on til the episode ended and then I would lose it. I wanted to be strong for my Brandon and wanted him to feel safe and that I was taking care of him the best I knew how…. Read More

Category: Parenting, Uncategorized Tags: #hydrocephalusawareness, #l1cam, #l1strong, #thankful, anxiety, awareness, Chromosomes, diagnosis, disability, Encouragement, Faith, genetics, Hope, life, Love, love of a child, Special Needs, surviving, thriving

Feeding Tube Drama

Brent has a hole in his G-tube! I have been on the phone talking to 10 different people who have no clue of what they’re doing …….. ugh!!!!!!! You would think after having a feeding tube for 14 years that it would be a piece of cake dealing with these companies… *SCREAM* ‪#‎feedingtubeissues‬ [ it never ends…. ]

Category: Feedings, Gastrostomy, Uncategorized Tags: #thankful, anxiety, awareness, diagnosis, disability, FEEDING tube, Hardship, Hope, life, Love, love of a child, Special Needs, surviving, thriving, X-linked