Philip

Sick Cells interviewed Philip: a caregiver to his son, a sickle cell warrior. Philip spoke to us about how he advocates for his son’s medical needs, the importance of celebrating the “ups” (big or small) after a “down”, and how he balances his own self-care and caregiving responsibilities through cooking.

What’s it like being a caregiver?

I care for my son. It’s difficult because it gets you frustrated and scared at the same time.

What’s a piece of advice you would give to other warriors or caregivers?

Reach out because it does get hard, caring for your loved one. It gets tough. There’s a lot of sleepless nights because you’re worried about them. And show up to events like Warrior Con where you get a lot of information. Knowledge is power. And the more knowledge that you have, the better you’re equipped to care for your loved one.

What are ways that you cope with stress as a caregiver?

I like to provide and one thing that I like to do is cook. I like to cook, I like to barbecue, I like to bake. I just like cooking. So when I’m cooking, I think more of what my son would like and how I can help with cooking to keep him healthy. And make it taste good, because nobody wants to eat nasty food. So it relieves me, my stress, by helping him. And when he eats, it makes me feel good.

What is one piece of advice that you wish somebody had given you about being a caregiver?

I wish somebody would have sat me down and told me that it’s a lot of heartache, but you have a lot of joy as well. Your kid is going to go through a lot and he is going to have a lot of downs, but the ups make you feel good. When you get to celebrate those, they make you feel real good.

As a father, seeing your son go through that is hard, but when you come out of it, you’re very powerful and it’s like that kid becomes your hero. I tell my son all the time, “You’re my superhero.”

Is there any message you would give to caregivers who may be struggling or would look for advice?

Breathe. Because when you’re going through it, your head gets cloudy and your emotions are all over the place. Breathe. Take a second and breathe.

And advocate as much as possible. Whoever you care for, their health is priority and they’re going to need your help because when they are in pain and you know they are, sometimes when they’re adults, doctors don’t believe them and don’t want to give them the medicine that they need when they tell them. So that’s where your advocacy comes in. So learn the material, get help when you need it, and breathe. Stay educated.