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. I kept holding on…..

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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…. ]

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brent1Brently Matthew

What I love most is that he smiles through it all.  The good, the bad, 2014-07-30 13.57.50& the ugly. He has attitude and loves to sing and play his instruments.  He loves Nascar and Alabama football.  He loves to sling his food at me when we are

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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.

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brandon smile

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 has had more on him than I could ever imagine.

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