Once a caregiver, always a caregiver. If not physically, then emotionally. No one embodies this more than Andre, a caregiver and father whose son passed away in 2001 at the age of 36.
Once a caregiver, always a caregiver. If not physically, then emotionally. No one embodies this more than Andre, a caregiver and father whose son passed away in 2001 at the age of 36.
Though his son is no longer physically here, Andre and his wife are still deeply connected to the sickle cell disease (SCD) community. Through the years, they’ve continued to attend conferences and events. It’s important that they maintain the bonds they created during some of the toughest times. Andre and his wife love to share their knowledge and compassion with other caregivers who are going through a similar experience.
As Andre describes, “[The SCD community] is a part of my life, even though my son is gone. We want to help other family members. Try to help the community, share our stories. So that companies, researchers, whoever, can understand what we go through as a community and make it important.”
For 36 years, Andre was by his son’s side. And he learned more than a thing or two about caring for a loved one. As he explains, “We've just been health advocates for a long time.”
If there’s one thing he could stress to other caregivers, it’s not to take on the guilt of having passed down the SCD trait. Andre says, “Just don’t beat yourself up too much. [We] used to beat ourselves up a lot. Why didn’t we get tested?”
“You want to be there for your child…
you put them before you and your needs.”
“You want to be there for your child… you put them before you and your needs.”
While caring for his Warrior, Andre often turned to his faith. He also connected with others who could understand what he was going through. He encourages other caregivers to do the same. He also recommends finding an outlet and trying to not let your role as a caregiver consume your day-to-day.
“You want to be there for your child… and you are there for your child… you put them before you and your needs. But, at the same time, life still kind of has to go on. You have to try to navigate that, and it's difficult.”
Andre also takes time to reflect on what it was like caring for a Warrior, too: “It’s difficult as a father because you want your sons to kind of be like you were in some aspects but a lot of times, with sickle cell, it just can’t happen that way.”
Throughout his son’s life, Andre made sure to find other ways to connect with and encourage his son. One way was to make sure his Warrior felt as normal as possible. “As a father, I always made my son feel he can achieve anything. I didn’t look at him or make him feel like his illness was a detriment to his development. We were very conscious of not saying ‘No you can’t do that.’” He’d encourage others in a similar situation to take a similar approach.
Throughout his son’s life, Andre made sure to find other ways to connect with and encourage his son. One way was to make sure his Warrior felt as normal as possible. “As a father, I always made my son feel he can achieve anything. I didn’t look at him or make him feel like his illness was a detriment to his development. We were very conscious of not saying ‘No you can’t do that.’” He’d encourage others in a similar situation to take a similar approach.
In many ways, Andre is living proof of a caregiver’s resilience. A caregiver never stops caring about the community and the people involved. And those bonds he formed years ago never seem to fade. “That’s what brought us here into this space—we just want to do everything we can to help other people.”
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