Evely was born without eyes, a rare condition called anophthalmia. When Tameka and her husband brought Evely home from the hospital, they thought blindness would be their one hurdle to navigate. They quickly learned this would not be the case; over the past five years of her life, she has been accumulating diagnosis after diagnosis of things like microcephaly and CHD. And although she is far from lacking in the medical diagnosis department, she is considered undiagnosed because she has no genetic syndrome to link it all together and give them an idea of what to look out for to keep her safe and healthy.
In this episode, Tameka shares what that has been like, as well as the ways that she is perfectly suited to be Evely’s mother, and the huge impact the pandemic has had on her mental health.
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When Evely was born to Tameka and Jonathon Diaz, they were shocked to learn she had no eyes. They took her home from the hospital under the impression that profound blindness would be their main concern. Six months later they would discover the first of many additional health concerns requiring medical equipment and many hospitalizations.
Evely has no umbrella diagnosis or genetic syndrome to link all of her medical complexities together, and that has been a huge challenge, as it is for the majority of the “undiagnosed” community. Tameka told me:
“That is what makes it extremely frustrating, because we have no idea what to look for next or what to expect next.”
As she shared the struggles of having an undiagnosed child (more to come in her upcoming special topic episode about medical advocacy), I thought of how much it would resonate with the rest of the undiagnosed community. So much of what makes rare parenting frustrating—the minimal studies and unclear prognoses—is magnified when navigating all of it without any studies or prognoses. She said:
“Sometimes I get so afraid to get comfortable where we are. I feel like I have to be mentally prepared to hear the next thing. It is so exhausting to try to prepare yourself in a mental way or an emotional way to hear another diagnosis for your child.”
And she holds this fear for good reason.
Evely’s congenital heart defects, microcephaly, and epilepsy were found only because Tameka followed her gut that something was off and advocated hard to have it looked into. Her most recent diagnosis of epilepsy was found only last year. So, she finds herself always on guard for “the next thing”.
Because of Evely’s medical fragility, the Diaz family has been going into what they deem “hibernation mode” every fall, hunkering down for flu and cold season. They would do grocery pick up and avoid family gatherings. She told me they had masks and gloves and hand sanitizer long before they became hugely common because of the COVID-19 pandemic. COVID hit right as they were about to come out of hibernation mode in March of 2020, they continued life they way it had gone the previous months. Although someone might guess that would make it easier for them, in many ways it was more difficult. Of it, she said:
“Living through the pandemic itself wasn't hard for us because that's what we've done. But just the whole realization of ‘This is it. This is my life. And there's a whole pandemic going on right now and literally nothing changed.’ That stung.”
It was a very difficult time for Tameka. After hustling from appointment to appointment and keeping Evely alive for the previous five years of her life, it all caught up with her. The permanence of it all was very heavy and she had to take a step back and really process it.
And hearing people’s complaints about living in a similar way they had for the past five years was another painful layer. She said it showed how her life is perceived.
And how isolating! It’s so isolating when society has a taste of our world and is very clear in how foreign it is to them. Not to mention the physical isolation that a continuous pandemic lifestyle brings inherently. Tameka laughed as she shared some of the precautions they would take pre-covid to ensure less interaction with others—and germs—and talked about how isolating that has been for her.
This podcast was created for such a purpose—to facilitate sharing of a community without the need to physically gather. We can share the intimate happenings of our lives and relate hardcore without leaving the house. Or on the way to appointments. Podcasts were made for our lifestyle and are the antidote for our isolation, or at least in part.
So, while we go about our lives that are so isolating on so many levels, may we find life-giving connection in the ways we can partake.