Tennessee Kindred Stories of Disability

A collection of stories from individuals with disabilities, families, friends, and disability service providers in Tennessee



Lilian (25), Down syndrome, Wilson County


"Every father deserves to know what will become of his child once he is no longer able to provide for their needs anymore. "

  • A Student interview of parent's Perspective
  • Posted on 2/25/2013

 

Anthony is a single father of three grown children. Two of his children are married with families living out of state. That leaves Anthony to solely care for his 25-year-old daughter, Lillian, who also happens to have Down syndrome. The transition to single parenthood has been a challenging venture for Anthony; he was not expecting to take on singular responsibility of his daughter at such an early paternal age.

Anthony and his wife moved to Nashville approximately six years ago for Anthony’s job transfer. Anthony was traveling a lot for work, and his wife was planted in Nashville working as a nurse at Vanderbilt University Hospital. Due to Anthony’s time spent away from home, his wife took on the duty of advocating for Lillian and figuring out their daughter’s postsecondary goals. Lillian’s mom was very involved in getting Lillian connected to community activities and resources. However, due to the wife’s unfortunate and untimely death, Anthony found himself in a position he could not have imagined for himself.

Forced to face a long and mournful grieving process with the passing of his wife, the immediacy of single parenthood with a daughter with special needs was almost unbearable for Anthony. Nevertheless, Anthony was obligated to rise to the occasion in order to secure a future for Lillian; she depended upon the efforts he made in advocating for her. Anthony slowly and surely began to take over his wife’s role in Lillian’s life, and through trial and error, began learning how to connect Lillian with the resources she would need in order to be successful. Anthony spoke about the frustration he faced time and time again in trying to find support for Lillian, both emotionally and financially. The agony he faced in spending time on dead-end phone calls, all the while having a heart that was trying to mend, became a source of defeat.

Additionally, Anthony was recently laid off and is in a tough financial bind. Thus, the assistance that he requires for Lillian is more needed than ever. Anthony also is concerned about what will happen to Lillian once he passes away. He does not want to burden Lillian’s older brothers and their families and he does not have a solution.

Lillian has been on the waiting list for services for years. Filled with emotion, Anthony speaks about the frustration due to the lack of government support and the immediacy of his need. Every father deserves to know what will become of his child once he is no longer able to provide for their needs anymore. Unfortunately, Anthony does not have that luxury. He has to live in uncertainty as each day passes, unsure of where and how he will be able to meet Lillian’s future and pressing needs.

 

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