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I never dreamed this emergency room visit would be our last. A statement that I have always heard through the years is that “a person never realizes what they have until it is gone”. Well, tonight I completely had a meltdown. I believe that statement is true. I was wanting my dad to come back and tell me that he was no longer sick, and that he was going to take my… Read More
I can’t believe that it’s been five years since I held him in my arms. He ran to Jesus at 8:30pm this very night. I believe he would have skipped over the crawling and/or walking stage as he entered Heaven and just took off running. Fourteen years of being a paraplegic, I definitely would.I can just hear the shouting as he entered the gates.
The song “I’ll Run with you” is one of my favorites that is sung by Broken Vessels. When I first heard it, I knew I wanted to make a video of some of my favorite pics of the boys.
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… Read More
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… Read More
SURVIVING TWO THRIVING...with L1cam Syndrome 