BARSTOW — The first time Cathyleen Williams knew anything might be wrong with her son was six weeks before he was born, when her doctor said there was a problem with his heart.
After baby Caleb was born with hypoplastic left heart syndrome, which left him with half his heart doing the work of a whole heart, Williams and her husband had three options: a heart transplant, open heart surgery or letting Caleb die.
The couple “decided to fight,” said Williams, who worked for the next 91/2 years to keep her son alive and away from anything that would harm him.
That fight ended in March when Caleb died of the flu.
But his death left Williams with a situation she never expected. Although during Caleb’s lifetime she was paid minimum wage as an In-Home Supportive Services caregiver, a loophole in California law means in-home caregiver parents and spouses can’t collect unemployment after their child or spouse dies.
Now Williams is in a new fight — to help close that loophole so other caregivers don’t end up in her situation.
“How do I focus on grieving for my kid when I’m so worried about losing everything we’ve worked so hard for?” asked Williams, who is trying to find other work. “How do you jump back into a society that you’ve been out of for 91/2 years?”
But relief may be on the way for Williams and others like her.
In February, Assemblyman Tom Lackey, R-Palmdale, introduced Assembly Bill 1930 to create an In-Home Supportive Services Family Caregiver Benefits Advisory Committee to examine situations like hers and create a report by Jan. 1, 2018. The report would make recommendations to ensure that IHSS providers who provide supportive services to a spouse or child have access to employment-based support and protections, including Social Security benefits and state unemployment insurance benefits.
“It’s just plain wrong that IHSS providers, who take care of their own children or spouses, are not allowed to participate in Social Security or other benefits,” Lackey wrote in an email, saying that “IHSS helps California’s most vulnerable population.”
The Assembly approved the bill 77-0 in June, when it also passed the Senate Human Services Committee. The measure now awaits consideration by the Senate Appropriations Committee later this month.
“Staying at home to care for a loved one with developmental disabilities is unquestionably one of the most difficult jobs there is,” Assemblyman Jay Obernolte, R-Hesperia, who represents Williams in Sacramento, wrote in an email. “I can only imagine the dedication and sacrifice it must take to look after a family member who needs constant care.”
Besides being unable to collect unemployment, Williams also lost Social Security disability payments she received on Caleb’s behalf and child support payments from her ex-husband.
Any eventual legislation would go into effect in January 2019 at the earliest, so it wouldn’t help Williams, who is collecting signatures online to petition Gov. Jerry Brown to change the law.
But for the former civilian worker at nearby Fort Irwin and later a preschool teacher, becoming Caleb’s full-time caregiver wasn’t in question. The baby had his first open heart surgery at 6 days old and would go on to have nine more.
Caleb was never eligible for a transplant. His heart pumped well enough to give him between 70 percent or 80 percent of the oxygen levels in normal blood. But poor circulation left him with bluish lips, cold skin and stick-thin limbs.
Besides open heart surgeries, Caleb also underwent dozens of other surgeries that included having a rebuilt aorta and a stent inserted.
Over his lifetime, Caleb’s weak immune system meant that he and his mom spent nearly all their time at home. He attended classes via Skype at a school less than a tenth of a mile away.
“We used to go for a drive around Barstow every day, just to get him out of the house,” Williams said. “It was like being in a prison with no walls.”
Williams marriage didn’t survive two years of raising a terminally ill child and eventually other social connections also fell away, with her interacting with people mostly through Facebook.
After Caleb’s funeral, Williams went home to an empty house with an urn of Caleb’s ashes sewn inside a stuffed toy of Olaf the snowman from “Frozen.” His room, decorated with a Dr. Seuss theme, still has “Oh, the Places You’ll Go!” written over his bed in bouncy letters.
“I’m 45 years old, starting all over,” she said. “Where do I go from here? I don’t really know. And the hardest part is I have to do it without him.”
But despite the pain and the uncertainty, Williams has no regrets over the decision to fight for Caleb almost 10 years ago.
“I was just so honored to have been his mother.”