My son, and only child, Isaiah Karrar Lofton, was born January 27, 2003, 1:27 p.m. at Alta Bates Hospital, in Berkeley, CA.  Isaiah was initially diagnosed with hydrocephalus (bleeding in the brain), and severe brain damage, due to lack of oxygen,that resulted from the umbilical cord being tied in a true knot.  Despite Isaiah's disabilities, I considered him to be my Miracle Baby, born 7 years after my daughter Cheyenne Tionne Lofton who was stillborn in November 27, 1996... also an issue with the umbilical cord.

Isaiah had a lot of health challenges, including: Cerebral Palsy with Epilepsy, severe developmental delay, fed through a G-Tube, was non-verbal, legally blind, had severe scoliosis, and spastic quadriplegia, so he was wheelchair bound.

I have been my son's primary parent and sole caregiver for all 16 years of his life.  My baby was everything to me. Due to his special needs, our lives were always on a strict schedule: medications, feedings, OT/PT, appointments with different doctors in various cities 50+ miles away, school IEP appointments, etc.  Sleep, for me, was a luxury...not to mention not having much of a social life.  However, I wouldn't have done anything differently,  because I loved my son, and he mattered more to me than anything.

Isaiah had endured a lifetime of illness, discomfort, surgeries, and pain. I have spent many nights staying awake, and holding Isaiah as he was sick, crying, vomiting, or having seizures. Somehow through all of that,  Isaiah would manage to smile or communicate that he was alright. Isaiah knew his Mommy loved him, and I know he loved me.

After Isaiah's spinal fusion surgery in September 2018, Isaiah spiked several fevers, resulting from infections due to possible rejection to the hardware in his back. Isaiah endured opening sutures, exposed rods from the opened sutures, more surgeries to his back, more fevers from infections, blood transfusions from loss of blood, and so much pain.  The infections began traveling to his lungs, and he became septic. Isaiah became weaker and became dependent on a ventilator to breathe for him.  Isaiah's doctors then explained to me how sick my baby's lungs were, and that I needed to make a decision. I was beyond devastated. I didn't want my son to die, but I couldn't bear to see him in so much pain, and struggling to breathe. It hurt me so much to my heart, to have to make the decision to take him off the ventilator. I'm just so grateful to God that my family members were with me when I had to make that difficult decision.

On Sunday, May 5, 2019 at 2:24 p.m. Isaiah died quietly and peacefully in my arms, surrounded by family and close friends. My son was no longer in pain...no longer gasping for air. He appeared to be sleeping.

I do apologize for the length of my summary of my son, Isaiah. I just typed everything that was in my heart.

After Isaiah was born, he needed total care. I had to resign from my job in order to take care of Isaiah. Isaiah's frequent appointments to his doctors,  therapy appointments, picking him up from school if he got sick, home care nurses not showing up for work or incompetent, etc. often kept me home. SSI and Solano County IHSS (In Home Supportive Services) were my only sources of income.  My income stopped immediately after the death of my son. The SEIU-2015 union, who had been taking dues from my checks for 13 years, offered no assistance or advice for any family transition, other than $650 and a very dry: "sorry for your loss."

I am now in desperate need of help. The abrupt discontinuation of my income have left me needing to leave my apartment of 10 years...I will lose my van, that I still owe more than $19,000 on...I will lose my health insurance, and pretty much lose everything. The burial and memorial of my son is so expensive...I had no idea how expensive even the most basic of arrangements could be. After 16 years of caring for my son, I need to learn to reset my life in order to function without my son.

Any contribution at all will be gratefully appreciated. Thanks in advance.