“As long as he’s fine, then I’m fine. When he’s not OK, then I’m not OK.”
For Elsa, mother and caregiver to a Warrior, it’s as simple as that. “What gives me hope is when I know that he’s OK. So I always just try to make sure that he’s OK.” And while this probably rings true for all parents, the “OK” holds a lot of weight when your child has sickle cell disease.
For Elsa, mother and caregiver to a Warrior, it’s as simple as that. “What gives me hope is when I know that he’s OK. So I always just try to make sure that he’s OK.” And while this probably rings true for all parents, the “OK” holds a lot of weight when your child has sickle cell disease.
Thinking back to her Warrior’s diagnosis and the first conversation with the pediatrician, Elsa didn’t know what her newborn’s life would look like. Would things be OK? She describes how the doctor delivered this life-changing news at her Warrior’s 1-week check-up.
“‘Hey, you had the newborn screening come back, and it looks like your son has sickle cell.’ He just blurted it out and proceeded to go on. The second I heard sickle cell—because of all of the negative things that I had already read—for me it felt like I heard ‘death sentence.’ I don’t know what else he said because I was calming myself down.”
Elsa found out she had the SCD trait when she was pregnant with her son. Her son’s father did not get tested, because he didn’t want Elsa to worry her whole pregnancy in case his test was also positive for the sickle cell trait. They knew the baby’s genetic makeup had already been determined. Elsa was hopeful her son would not have SCD, although she understood there was a chance. The diagnosis was still a shock. “I fell into a depression the first few months.”
In the years Elsa has cared for her Warrior, there are certain things that keep her grounded.
“When it comes to me and my experience,
I try to be as open and as candid as possible.”
“When it comes to me and my experience,
I try to be as open and as candid as possible.”
“I’ve learned that it’s important to share, no matter who you’re sharing it with. That lack of information was what left me so hopeless when we first got the diagnosis. At least when it comes to me and my experience, I try to be as open and as candid as possible.”
“I’ve learned that it’s important to share, no matter who you’re sharing it with. That lack of information was what left me so hopeless when we first got the diagnosis. At least when it comes to me and my experience, I try to be as open and as candid as possible.”
The other thing she stands by is keeping things as normal as possible. This goes for both her and her Warrior. For her son, it means making sure he feels as much like a regular kid as possible. “For the most part we live a normal life. We really are super intentional about not treating him like a patient. We don’t talk about it a lot, other than when he’s in pain.”
The other thing she stands by is keeping things as normal as possible. This goes for both her and her Warrior. For her son, it means making sure he feels as much like a regular kid as possible. “For the most part we live a normal life. We really are super intentional about not treating him like a patient. We don’t talk about it a lot, other than when he’s in pain.”
Elsa also likes connecting with and learning from other caregivers. As she describes, “It’s been amazing, talking to other moms or other parents that have gone through this. That can shed a light on what to expect. The disease affects every single person differently, even within the same family. And every crisis is different.”
On the flip side, Elsa doesn’t let her Warrior’s disease consume every conversation.
“I want to laugh. I want to talk about all of the things that are not being talked about. All of the things that doctors don’t tell us. Things that textbooks don’t tell us. But I don’t want to just talk about the gloom and doom of sickle cell all day.”
Lastly, Elsa knows it’s important to balance her time. While her son will always come first, Elsa understands it’s important to take care of herself, too. When she needs to unwind, she says, it’s all about travel and spending time with her extended family. “Definitely getting away... a week with just my sisters and my cousins. Spending time with my family and friends—honestly just decompressing, not talking about sickle cell.”
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