how i care for hiv: instilling values through unconditional love
"hiv is something that i have. but it doesn’t make up all of who i am. so, if they can’t accept that, well, then that’s their loss."
10 minute read
ashley was born with hiv, and her adoptive mother, kari, wasn't going to let a little diagnosis stop her from growing up with love and passion for life.
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ashley rose murphy was born hiv-positive. her birth parents were not well-equipped to take care of her at the time, and after a surprise visit from child services, ashley was put into the foster care system.
kari murphy wasn’t the first person given the opportunity to raise ashley, but she was the last.
it was practically love at first sight when kari held ashley for the first time, and when she was told ashley wouldn’t make it past infancy, she didn’t care. she “couldn’t stand the thought of this little baby not being loved in her last moments of life.”
kari knew ashley was special and deserved all the love in the world, even if it was just for a short time. even so, once kari brought her newest daughter home, her idea of the future changed, and she believed that ashley wouldn’t be gone from their lives any time soon.
“when i brought her home, i just had this overwhelming feeling come over me that she was not going to die and that she was ours,” kari said. “she’s not just going to be here for a month. she’s staying forever.”
ashley, who was expected to live mere months after being born, is now a 26-year-old assistant director at a jewish non-profit with a lifetime of experience advocating for hiv. she’s also in a healthy and happy relationship, with marriage and children on the horizon.
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hiv advocacy by example
growing up, ashley spent a lot of time at sick kids hospital in toronto, ontario. she would go for appointments to measure her viral load, check on her overall health status, and was part of a support group dedicated to bringing children who are hiv-positive together to learn and flourish as a community.
eventually, some of the children in her support group were asked to take part in conferences and other interviews to shed light on children living with hiv and, at just ten years old, ashley aspired to be just like them. that started her lifelong journey with hiv advocacy.
“the reason i did it initially was because of the older people in my clinic. you know, monkey see, monkey do. you want to be like the older big kids, and i was ten at the time, so i was like, sure, i want to do it.” she said, later continuing, “it just kind of snowballed from there. after i spoke, people would come up to me, and they’d say, ‘ashley, your words really affected me.’”
“the easiest thing to do was tell my story and to be myself. so, i just kept going with it because people would come up to me, and they said, ‘ashley, you’re my hero. you’re really inspiring.’”
at first, ashley couldn’t fathom the significant impact she could have. her heroes were martin luther king junior and mahatma gandhi, so the bar was already high. it wasn’t until she took a step back to soak it all in that she realized power of her story.
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as a natural performer who loved being the centre of attention, ashley was invigorated by the experience. kari remembers watching with pride as her daughter stood in front of a crowd of strangers at a conference and shared intimate details about her life.
“it really was an incredible moment for me to watch and see the physical changes in posture and voice,” kari said. “her voice became stronger and clearer.”
growing up hiv-positive
kari and her husband, don, a retired teacher from ajax, have ten children. two are biological and the remaining eight were either adopted, or former foster children who felt at home with the murphys long after their 18th birthdays. most of their children, including ashley, have some sort of medical condition or special needs.
kari and don always tried to love these children in the way they need it most, and in a way that provides them with stable and happy futures regardless of their health condition.
but when it came to ashley, though, they weren’t always on board with the advocacy side of things. not because it wasn’t important but because of the repercussions ashley could face from peers if they found out she was hiv-positive.
“we told her, you know, not to tell anyone because people could be mean. at her sick kids group and at summer camp, she heard from other kids about the bullying,” kari said. “you know, discrimination and things that those kids, when they told someone, they would confide in someone they thought was a good friend, and then two weeks later, they have an argument with that friend, and that kid tells the whole school.”
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kari and her family have seen the negative aspects of living openly with hiv as a child. she knew children and their families that have had to leave their homes and communities once people found out about a child’s hiv-positive status.
even teachers, however well-meaning, were tied down with biases and discrimination towards the hiv-positive community, letting bullied children continue to be tormented because of their status. ashley talks about an experience she had with one teacher in particular, who treated her well but didn’t know enough about hiv to calm the stigma.
“one time, when i was in grade 12, i had cut my hand on a guitar string in my music class. obviously, it was unintentional. those things just kind of happened. there was very little blood,” she said, later continuing, “after it happened, he was like, ‘do we need to get the ministry of health involved?’
kari remembered that the teacher didn’t just ask whether a call would be necessary. he actually called public health, a fact that ashley didn’t know about. he had also gone to the board and said he would have to call the parents of the girl who used the guitar after ashley, as it was his duty to disclose it to them.
ashley, knowing her status and the fact that she was undetectable, meaning her viral load is so low that, according to kari, “even if that girl licked the blood off the guitar string, she’s still not going to get hiv” cleaned up her blood and went about her day.
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that wasn’t the first time other people had gone out of their way to make them feel like ashley didn’t have a place in the education system.
“when ashley was little, we had people calling her elementary school saying they didn’t want her in the school and wanted her to go to a different school,” kari said.
instead of conforming to the biases of others, ashley’s principal devised a new plan to ensure that she wouldn’t ever have to feel like she couldn’t come to school and learn, just like every other little kid.
“our principal had already had a meeting with the school board, and they came up with a plan. if anyone says they don’t want ashley in the school, you tell them, ‘you’re welcome to go take your child to another school. but she’s staying,’” kari said.
a family of advocates facing the world together
ashley and kari cannot recount many negative experiences or ‘tough times’ they had to endure to ensure ashley grew up healthy and happy. in a big family, with many of the children dealing with their own limitations and health concerns, it wasn’t out of place to be focused on taking care of each other in all the ways a family can.
when one child needed help studying, another would step in and play the role of tutor. when kari needed help changing a g-tube (feeding tube) for ashley, she would enlist the help of one of her other children. kari remembers one instance in particular where one of the more challenging jobs, inserting the g-tube, didn’t entirely go as planned
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“some of the older kids would hold her hand and keep her calm while i changed the g-tube, and that was a hard task,” kari said. “one instance, when we were trying to change the new g-tube, i pulled (because) you have to let the air out of the inside balloon that keeps it in place, so i let the air out of the balloon, and then i pulled the g-tube out, but it was still stuck a little bit. when i pulled it out, all this gastric juice splashed up into my daughter’s face.”
kari remembers how upset her daughter was at that moment, but they were able to laugh it off together shortly after. of course, her daughter, who was 13 at the time, continued to hold it over her head for the next five years.
all of kari and don’s children relied on each other throughout life, and since so many of them were unique in their own ways, children outside of the family could sometimes be cruel. kari remembers all of her children, ashley included, being bullied at one point or another throughout their lives because of their differences.
“all of them (our kids) were teased at various times. some of them, pretty heavy teasing or bullying because they all had, you know, wheelchairs or (were) legally blind, or walkers, or developmentally delayed, or different looking,” kari said. “so, they’ve all gone through some bullying, and what our kids ended up doing was, you know, if people didn’t want to play with them because they were different, well, who cares?”
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ashley had nine siblings, and having such a big family and support system created a bond only siblings could understand. kari’s oldest biological daughter doesn’t have any special needs, but being a big sister, she had their backs when people came to mess with her family.
“my oldest biological daughter—she’s not special needs—and she became a pretty fierce advocate,” kari said before continuing. “she would step in, and anybody who would pick on her siblings, they were going to hear from her. a lot of kids, i think, were a little bit afraid of what she might do if they picked on the other kids.”
teaching self-love and knowing your worth
it’s no secret that hiv comes with a lot of stigma, even now when medications are creating undetectable viral loads, and people living with it can lead happy and healthy lives without spreading it to others.
for ashley, feeling that stigma wasn’t as profound as it may be for others because ever since she was a young child, she was a part of a community of hiv-positive children just like her.
that sense of belonging only perpetuated her parents’ teachings that she is worth love and that starts from within.. of course, that didn’t stop her from wondering about her future with hiv and asking her mother the tough questions as a child.
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“we’d be cleaning my room, and i’d just, like, randomly stop and be like, ‘do you think i’ll be able to have kids? do you think i’ll find a husband who actually loves me?’ and these are things that are, like, crazy, now that i think about it,” ashley said. “that came out of my 12-year-old mouth, and also hard questions for my mom to answer. but she would always say yes.”
kari knew without a doubt that ashley would accomplish everything she desired in life because she worked hard to ensure that her children knew their value and understood that just because their lives were different didn’t mean they didn’t have their own special place in the world.
“it makes you more empowered when you feel like you’re a part of a group and you feel like you belong. then, it’s like the other people on the outside that have negative perspectives,” said ashley. “it’s like those people, at the end of the day, they don’t matter. the people that matter are the people that are in your circle and that are cheering for you and that you’re cheering them on, too.”
as for kari and her husband, dedicating their lives to raising children who are often forgotten or dismissed was an easy choice. the people they raised are proof enoughand they’ll continue to pass the same values down to their grandchildren.
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“seeing them happy and loved and successful more than anything. and successful doesn’t mean earning big bucks,” said kari. “it means doing something you enjoy doing, surrounding yourself with a good circle of friends, healthy loving relationships with no verbal abuse or anything like that. and good health. those are the things that i really appreciate and feel a sense of pride.”
“we got them through the medical emergencies and got them through the teenage years, you know, no police knocking on the door or anything like that,” kari said. “it was just a sense of pride that we did it. they did it. and now they’re enjoying the fruits of their and our labour.”
as for ashley, the ethics, morals, and values instilled in her by her parents remain strong to this day. she learned early on in life that if people can’t accept her for who she is, she doesn’t need them around. ashley knows what she’s worth and what she doesn’t have to accept from others.
“she (her mom) would say, ‘ if they can’t accept that little part of you, then they don’t deserve to have you as a friend or anything.’ and i really took that to heart because i was like, sure, hiv is something that i have. but it doesn’t make up all of who i am. so, if they can’t accept that, well, then that’s their loss,” ashley said.
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“i’ve always had a very strong sense of self and who i am, and i think it’s all due to how i was raised, like genuinely. so, yeah, i’m just excited for the future.”
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