Acceptance and the LOVE of Football

 

We all want to be accepted for who we are in this life.  Right?

As a special needs mom, I want this for my son. ACCEPTANCE. I have never seen him so excited than this very day (other than at church) Ha Ha! Some of Brent’s classmates, his teacher and coach, all came over to our home, as well as the local newspaper, and presented him with a team jersey. Go Lions! Continue reading

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Feeding Tube Awareness 2018

We are definitely battling with the feeding tube on a daily basis.  But, what’s new?  I was sitting here pondering on how long it has been that I learned how to work with feeding tubes and I have to say that I am a genius! haha.  It has been 18 years. What is up with that? I should have a medical degree of some sort by now.  Don’t you agree?

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The Sweetest Words Ever Spoken

 

I never dreamed I would hear him say it.  As a mom of a child with special needs, I can say that this was so rewarding for me and for him.

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Cortical Vision Impairment (CVI)

What is Cortical Vision Impairment (CVI)?

It is what my child has been diagnosed with.

The medical term is

  • a form of vision impairment that is caused by a brain problem rather than an eye problem.  CVI is caused by any process that damages the visual parts of the brain.

So, this means basically that Brent is blind.  Blind only in his right eye so I am thankful that he still can see good in his left eye.  With the diagnosis, comes Vision Therapy!

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Budd-Chiari Syndrome

BuddChiari syndrome is a very rare condition. It is an uncommon condition induced by thrombotic or nonthrombotic obstruction of the hepatic venous outflow and is characterized by hepatomegaly, ascites, and abdominal pain. It is caused by blood clots that completely or partially block blood flow from the liver. It usually occurs when a clot narrows or blocks the hepatic veins, which carry blood out of the liver.

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My Kind Of RARE

2016-02-09 17.05.06
Brandon & Brently

 Loving someone who is RARE is a precious honor.  I am thankful God has given me the privilege to love two special RARE people in this life.  This RARE condition is a chromosome disorder of the L1cam gene and it’s a neurological disorder called L1 Syndrome. Daily struggles make it worthwhile when the smallest little grin comes across my sweet boys faces or hearing the laughter and seeing the silly faces they make when they think no one is watching, listening, or even signing a new sign after teaching it to them over and over and over again. Sometimes it can feel like your not winning this battle and then all of a sudden…. he signs….

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Blind

I think I am drowning in my own sorrow.  I’m the lady who can handle everything that comes her way…. ya, NOT so much! I am drowning.  I pick myself up off the ground every single day hoping that I have made some sort of difference in a person’s life.  My son’s life. His life matters! Brently’s life does matter!  He has a purpose! God says he does. (Jer. 29:11)

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