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. The ins and outs of daily struggles makes it worthwhile when the smallest little grin comes across their face or hearing the laughter and seeing the silly faces they make when they think no one is watching or listening or even signing a new sign after teaching it to them over and over and over again and you feel like your not winning this battle and all of a sudden…. he signs….
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)
This was an amazing night. Several Southern Gospel Groups, including Saving Faith (the group I sang with), got together and had a benefit singing to raise money for the David Zills Memorial Fund for ALS. I enjoyed singing with Broken Vessels that night several years ago. I came across this video and wanted to share.
“In The Garden”
A tear silently rolled down my cheek as I opened a letter that was addressed to my son today. I looked at my husband and said, “I’m sure he could care less about his Medicaid and everything going on in this world today because he is free of all the chaos and why would the State want to send a letter in the mail for him to vote? Do they not know that almost four years ago our precious son went to Heaven? Does the State not realize that they didn’t care about him alive so why would they care now that he is gone?”
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!