L1CAM 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?

I am amazed at how technology is today.  When facebook was established, I started researching and found a group called L1.  I was told a different diagnosis but the meaning of both diagnosis’s was the same so 2 years ago I found out that it is L1 Syndrome. 

I have talked with many people through the years and shared my story, my personal testimony.  It was a way to release the hurt and pain that I felt as I shared how my life changed the day I had my first child and how I was young and scared and just the “not knowing” of what could happen. Along this journey, I have learned how to be patient (most of the time) haha! I have seen things and done things in the medical field that I never thought was possible.  I have seen my boys struggle through some very hard times.  

Through those hard times, a smile would always surface.  I was struggling and was angry because I hated to see them in so much pain but God lifted my spirit again and again and again and continues to do so.  All the brain surgeries, feeding tubes, hip and tendon release surgeries, spine surgeries and the list continues….

I know a smile will always be on their face.  God shared with me of how much He loves us and how precious life really is. I am reminded by my Pastor, Bro. James that “The breath you breath each day is a gift from God” and “Jesus Changes Everything”. That’s good stuff right there….

God gave me this verse that hangs on Brently’s wall in his room that says: 

Be strong and courageous.  Do not be afraid or terrified because of them, for the LORD your God goes with you; He will never leave you nor forsake you.  (NIV)

*Deuteronomy 31:6*

I say all of this because it leads me to a place of where I am today.  After much prayer and striving to make the best of each day, God answered my prayer.  I got to finally meet families that are just like me. We met at the MALL OF AMERICA and it was so awesome! As I looked at all the families, happy tears began to flow.  We talked and shared stories and most of them were very similar.  It is amazing at how the L1CAM gene affects your whole entire nervous system and how one small mutation of this gene did not form or is missing.  

As I set back to take it all in, I watched all the brave and wonderful mom’s.  They all looked like me.. 

1) A mom who is give out but will do anything and everything to make sure their child gets the best care that they can give.

2) A mom who strives daily and is hanging by a thread because she needs just 5 minutes to herself to gain an ounce of strength because most of those days are sitting in waiting rooms or hospitals.

I will never forget and I probably have mentioned this in another post.. I am not sure but one of my previous Pastor’s shared with me that God gives you just enough strength to make it though the day no matter what kind of day your facing. I believe that!! Some days I have no energy to even get out of bed and I have no words to pray because of being so exhausted and I just say the name of Jesus.  There is enough power in that Name that will give what you need. I continue to thank Him through the valley’s and trials of this life.  I would not be where I am today if it wasn’t for the unconditional love that God, Himself has shown me and through the lives of my boys.  

I am thankful and blessed! I am so glad that I got to meet these families and can’t wait to meet them again!

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