Thirty-two years ago today, my sweet nephew Daniel entered the world and forever changed our lives. At his sixth month in utero, it was determined that Daniel had hydrocephalus, often referred to as “water on the brain.” Hydrocephalus is a condition in which there is a buildup of cerebrospinal fluid in the cavities (ventricles) deep within the brain. The excess fluid increases the size of the ventricles and puts pressure on the brain. The diagnosis of hydrocephalus meant that brain damage would most likely occur during development due to the pressure caused by the fluid buildup.
As can be imagined, receiving this news about their baby was devastating for my sister and brother-in-law, a young and newly married couple. Daniel was indeed born with severe brain damage which led to a host of disabilities. Daniel had a feeding tube and a colostomy and was unable to walk or talk. He was completely dependent upon his parents for his full care. When he was just a year old, Dr. Ben Carson – yes, That Ben Carson – performed surgery on Daniel. He informed Danny’s parents, Leslie & Cy, that the corpus callosum was not formed. The corpus callosum is the bridge between the left and right sides of the brain that allows information to pass between the two halves.
Being born with brain damage and an unformed corpus callosum though didn’t stop Daniel from learning, even learning sign language! Daniel loved music, toys with lights and sounds, and interaction with those around him. The sillier a person was when they played or interacted with Danny, the better he liked it! He laughed so hard sometimes that tears streamed down his cheeks. Daniel’s life brought blessings to our family that we would not have known without him.
If you ask Cy and Leslie how they did it – how they handled caring for a highly-involved child for 12 years, how Cy held down a job the entire time, how they managed numerous surgeries and extended hospital stays, how they took care of a second son born about 5 years later, and how at the age of 12 years they said their final goodbye on this earth to their dearly-loved firstborn son, they would say that God gave them strength through their dependence on Him. Whom have I in heaven but you? And there is nothing on earth that I desire besides you. My flesh and my heart may fail, but God is the strength of my heart and my portion forever [Psalm 73: 25-26]. They would say that Daniel was a blessing and never a burden. They would answer without hesitation that they would willingly do it all over again.
Despite the many challenges that came during his 12 short years of life, Daniel’s joy was infectious and his laughter was contagious! He gave and received more love & happiness than many people do in a lifetime. He was a pleasant boy and it showed even on his worst days, even on the many days when he was very ill. It’s hard to find a picture of him without a smile on his face! You will always be loved, Daniel!! HAPPY 32ND BIRTHDAY IN HEAVEN!!
HOPE NUGGET: The steadfast love of the LORD never ceases; his mercies never come to an end; they are new every morning; great is your faithfulness. [Lamentations 3: 22-23]