On December 27, 2018, my 25-year old daughter, Asha, died after being trapped in our home elevator. Asha was born with a condition called “cavernous malformation,” which are lesions located in her mid-brain. Asha underwent several surgical procedures as well as major brain operations, leaving her with vision and hearing impairments. A 2013 brain bleed rendered her wheelchair bound. Asha suffered a great deal during the last two years of her life due to unforeseen trauma in her life. It became increasingly difficult to lift Asha’s spirits. The depression and feeling of hopelessness left Asha heartbroken and, as a mother, this was difficult to watch. I tried so hard to find a place where Asha could go and feel as though she belonged.
Asha was a very loving person with a great love for children and animals. When Asha was little, she would say, “I’m going to be a pediatrician when I grow up, mom”. I have no doubt she would have been one of the best and most loved pediatricians in her field. After making countless phone calls and following up on several leads it became painfully clear that this type of overnight respite service did not exist. Asha died without ever finding a place to “belong.” I made it my mission to create this place in her honor. I feel this would have made a big difference in our lives
Testimony of the Need for Respite
In October 2017, I received a phone call that my sister (a year older than myself) was taken to the hospital and not expected to survive. With all of my family by her bedside in Houston, TX, I was left trying to find someone to care for Asha so that I could travel to be with my sister. Left with no other options, my good friend from Wisconsin took three days off from work, drove 10 hours to Nebraska to be with Asha, allowing me to fly to Houston to say goodbye to my sister. My sister passed away two hours after I arrived. Although I am grateful I had the opportunity to say goodbye to my sister, I couldn’t help but feel this wasn’t right. Asha’s House would provide overnight respite so no one would ever be put in this position. Parents/guardians should not have to live a life without the help and support needed to bear the struggles of raising a child with disabilities.
The Purpose of Respite
Asha’s House will be a place of retreat where individuals with disabilities will come to be cared for in a safe and loving environment, allowing their parents/guardians to have self-care time and/or attend to other responsibilities and obligations. I truly believe a place of respite, where Asha could have connected with others her age, would have made a life-changing difference for our family. Asha’s House will be a place where guests are excited to come and feel as if they are visiting their second home or favorite retreat.
Asha’s Educational Story
Even with her many disabilities, Asha had always been a very smart child. She excelled in school, always making the Honor Roll. Her strongest area was math, although she didn’t particularly like math, she was just naturally good at it. At the age of ten, her cousin Nick named her “A Human Calculator.” Asha needed a place that would challenge her intellect and allow her to continue to learn and grow. Because Asha’s needs were many, it was impossible for her to attend college. I’m sure having a place where she could be challenged to continue to learn and grow would have made a difference in her life as well as her mental health. This is why Asha’s House will also be a Day Learning Center in addition to a place of respite and retreat.