Caleb's Story

Spooky Duke Race 2017

Hope, Love, and Learning to Trust—My Hero

By: Caleb's Mom

Our son, Caleb, was born on the same day (only eight years later) than his big brother, Jacob, was born. However, Jacob passed away from anencephaly, a neural tube defect of the head. January 5th was not a good day!  I remember saying, “Not today! Any day but not today!” My husband was hopeful and encouraging but an hour after Caleb was born, he crashed. He had two brain bleeds resulting in cerebral palsy. Much too young to have surgery, the doctors had to relieve the pressure on his brain and inserted one of his first two shunts.  On Valentine’s day, after 2 surgeries, the doctors told us we could take Caleb home with the prognosis of “He will probably never be able to walk, or talk, or do what other children do. But take him home and love him, because love and determination will make all the difference and do what medicine may never do.  AND don’t ever take ‘No’ for an answer until you have to!” 

With tons of love and determination, after more than 25 surgeries and lots of intervention, Caleb, now 20 is a happy, healthy young man.  Can he walk? No, but he has a power wheelchair. Can he do what other kids do? Many times with lots of adaptations and his two sister’s sheer will power.  Can he talk? Absolutely!  And with lots of humor riddled in the midst of most everything he says! 

Caleb is a typical young man when it comes to sports. He loves golf, racing, basketball, billiards, bull riding, college football, and TV. He loves many shows including Jeopardy, Dancing with the Stars, Wheel of Fortune, and Maury because he like to hear, “You ARE the father!” He loves to watch plays and interact with those who star in them whether it is at our church, the little theater in town, or whether he goes to a play with his class.  He tells them what they need to do and what is expected!  He will fight to control whatever he can—his circumstances, his environment, his surroundings, and you!  He convinced one of the non-verbal students in his class to knock on the door when the teacher was in the bathroom. Caleb couldn’t physically do it so he needed an accomplice just to be funny!

I never thought I could contend with anyone with disabilities, let alone my own child, but he has been my teacher.  We never stopped hoping or striving.   We took the doctor’s advice from many years ago loved him wholeheartedly, and determined to never give up trying to help him be “just another kid.”  Maybe, I have come to the conclusion that he will never walk but with today’s technology…?  I still haven’t taken “No” for an answer!  Caleb has taught me there is always hope and, just when I think he can’t, he shows me there are more possibilities!  Love and determination has made all the difference! He has taught me so well that I now work for Parent to Parent Family Support Network-HC and assist other parents learn to dream and find the possibilities with their children.  Caleb’s teacher said she now knows what real love is because of Caleb!   And hasn’t he done that for all of us?  He teaches all who come into his circle of friends and family to hope and trust but, most importantly, to love.  What more can we want for our son, we, his sisters and parents, have hope, we have learned to trust, but, most of all, we have learned to love more fully just because of Caleb. He’s my hero!

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