Category Archives: Faith

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

Budd-Chiari Syndrome

Budd–Chiari 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 … Continue reading

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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

Hope Anchors The Soul

I am numb.  I don’t have any words of wisdom or encouragement for myself or to give anyone this very minute. My brain is trying to stay positive but in my heart I know that another battle is about to … 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

Mixed Emotions

I ask myself these questions from time to time now.  How does one celebrate for one child and still continue to mourn the loss of another child?  Can I be still be happy for the one I still have here … Continue reading

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