Category Archives: Special Needs, L1Syndrome

Epilepsy

 November is Epilepsy Awareness Month.    The Merriam-Webster dictionary gives this definition of the word Epilepsy. Definition of epilepsy  : any of various disorders marked by abnormal electrical discharges in the brain and typically manifested by sudden brief episodes of altered or … Continue reading

Posted in Faith, Hospitalization, Loss, Death of a child, Parenting, Seizures, Special Needs, L1Syndrome, Uncategorized | Tagged , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , | Leave a comment

Right in the middle of it all, There Is Jesus!

Life has a way of lifting you up in the most exciting times and tear you down in some of the most horrific times.   Some say it’s whatever road you choose to follow.  Whether good or bad, YOU choose!  I … Continue reading

Posted in A Life Worth Living, Faith, Hardship, Loss, Death of a child, Special Needs, L1Syndrome, Thankfulness | Tagged , , , , , , , , , , , , , , , , | 1 Comment

My Kind Of RARE

 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 … Continue reading

Posted in Acceptance, Faith, Parenting, Siblings, Same Diagnosis, Special Needs, L1Syndrome, Thankfulness, Uncategorized | Tagged , , , , , , , , , , , , , , , , , , , , | Leave a comment

X-linked Hydrocephlaus

X-linked hydrocephalus (L1 syndrome) **September is Hydrocephalus Awareness month** Hydrocephalus is referred to as water on the brain.  The water is called cerebrospinal fluid (CSF), a clear liquid that is produced in the 4 ventricles (cavities) of the brain. My … Continue reading

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Crazy Kind of Day

Today has been another day of clinging on to hope and having faith that God will help us through this storm we are in.  I had to take Brent to the Doctor today.  He had a blockage and I just … Continue reading

Posted in Faith, Hardship, Parenting, Special Needs, L1Syndrome | Tagged , , , , , , , , , , , , , , , , , , , , , , , , | 3 Comments

My Kind of RARE

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.

Posted in Disability, L1syndrome, Siblings, Same Diagnosis, Special Needs, L1Syndrome | Leave a comment

God’s Plan

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 … Continue reading

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