Welsh mother Alison White candidly admits how much she struggled when she learned that her son, Louis, was born with brain damage. In her most desperate hours, she even used to imagine holding him and jumping off a cliff together.
Twenty one years later, White now says her son is a blessing and a joy. She recently published a book, “Letter To Louis,” describing the struggles and joys of raising a child with special needs, the Daily Mail reports.
“Our lives may not have been what we expected or planned but they have been intense and filled with deep, deep love,” White said.
Louis, 21, has cerebral palsy and requires constant care. He suffered brain damage in the womb, possibly related to the pre-eclampsia that endangered his mother’s life near the end of the pregnancy, according to the report.
As a baby, Louis spent 99 days in the hospital before he was well enough to go home. He has physical and mental disabilities.
The news of Louis’s condition and his around-the-clock care took an immediate toll on Alison and her husband, Greg. Alison said she struggled deeply with the thought of her son’s suffering, as well as the loss of her own freedom. She admitted that she sometimes had dark dreams about taking Louis into her arms and jumping off a cliff together.
“For me it was more of a dream sequence, a longing for escape and to relieve Louis of his pain and distress,” White said. “I didn’t want my destiny. I didn’t want to be the mother of disabled child. I didn’t want to be a carer, to lose my freedom forever. It was devastating to know that this was my life.”
The Whites showed strength and determination, though, when they refused to send Louis to live in a health care facility. They sacrificed their time and ambitions to keep him at home.
They struggled even more to balance their lives when their two younger children were born, but they made it work. One parent would care for Louis while the other spent time with the other two children.
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“Greg and I had a strong relationship but caring for Louis is constant – there is very little left for anyone else,” White said.
Their two younger children developed an amazing relationship with their brother, making sure to include him as much as possible and helping others understand his value, their mother said.
Today, Louis is studying music therapy in college. His family said he enjoys playing practical jokes, throwing parties and listening to music. He uses a wheelchair or walker to get around, and he struggles with behavioral ticks, such as dialing the emergency number on the phone. He still depends on his parents for his basic needs, as well.
But White made it clear that they love Louis for who he is. She said if she could change his condition, it would be for his sake, not hers.
“In the end you find acceptance and you start to look for the most positive way of dealing with it,” she said. “Mothering Louis has brought me incredible moments of joy. They’ve been enriching and incomparable, to the point that everyday times can feel mundane in comparison.”