April

How would you say you have been managing or coping through that as a caregiver? Did you have a support group?

I did have a support group available, but I never really took it because I didn’t feel like I could trust the people. I don’t know why, what that’s about. But yeah, now we have a really good support group. And as far as managing, it’s phases. 

There’s phases of good, there’s phases of bad, or maybe I should say moments. There’s moments of good and moments of bad. There’s moments of heartache and there’s moments where you want to just completely take the pain away, but then there’s moments when he’s feeling really good and he gets in his own way and he does his own thing. And then you’re happy, but then you’re upset because you’re like, “Well, make better decisions.” But you’re happy he’s making those decisions. So he’s trying to live his life like someone who does not even have anything to hold him back. So I mean, it varies. It varies greatly.

What would your advice be to other sickle cell warriors or advocates, caregivers, or people who have children with sickle cell disease?

Well, as a parent with a child that has sickle cell disease, do your research, stay on it to see if there’s things that can kind of help them. Because people do live long lives with it, but do your research. Make sure you know [what] things that have changed. Read up on the stem cell transplant. If you can do it, try to participate in it. As a warrior, well, just try to be encouraging to the person that has it, because I know it’s got to be kind of hard on them, but just try to be encouraging to them, be there for them when they have their pain crisis and stuff like that.

What is something you wish you knew that people could have told you about being a caregiver to a child with sickle cell disease?

Get started with the transition from childcare to adult care as soon as possible. Really connect with the care team because the pediatric care is so much different than adult care. The adult side of things, they’re like, “Oh, you got sickle cell? Okay, well go have a seat. We’ll take care of you.” But when you’re in pediatric care and you’re a child and you’re in pain and you have sickle cell, you get coddled, you get babied, you get suckers, you get popsicles, you get all the treats. So it’s so different. And then as a caregiver, it’s different for us too, because even though we have the information, we’re even pushed to the side and we’re told, “Well, we’ll get to them when we can.” We’re just faced with a lot of challenges as well.

I just wish someone would’ve told me to prepare ahead of time instead of trying to play catch up right now because I still feel like we’re slipping through the cracks, even though we may not be. So I connect with organizations like High-End Wellness. I connect with Sickle Cell Consortium. I connect with anything that has to do with sickle cell. And I’m starting to see even now how important these organizations are because they give you the knowledge base, they give you the support. It’s beautiful. They give you the love. They give you the resources that you need to work through the challenges and meet you where you’re at so that you can keep going and be successful at it.

Do you think there are any misconceptions or have there been any misconceptions about being a caregiver to a child living with sickle cell disease? And even with being a Jehovah's Witness, are there any misconceptions that people have with regards to treatment options or anything pertaining to that?

Absolutely. As far as being a caregiver for someone with sickle cell, I often wonder [about misconceptions] because when we enter the ER, they look at you like you got something wrong on your face. They look at you like something’s wrong with you. “Why are you wanting medical treatment for this person?” No, it’s not medical treatment. “Why are you wanting pain medicine for this kid or for this person? And why are you advocating for him to have pain medicine? Don’t you know he’s going to get addicted?” So that’s one of the first things actually talking about it. I never realized it until now.

Being a Jehovah’s Witness [is also] a really unique situation because we do not accept blood. And because of that, there’s this misconception that we do not love our children or we don’t care for them properly. And so what happens is we get looked at weird, we get judged, CPS called on us because they think we’re unfit to care for our families. And that’s not the case because why else would we go to a hospital and try to get medical treatment? And we actually come with answers like solutions. “Well, if we can’t do this, why can’t we do this?” We have a hospital liaison committee that we can go to get support for our loved ones who are Jehovah’s Witnesses in regards to bloodless medicine. And so we come with solutions, but still, we still get the CPS and the hard, I don’t know, the crazy looks and the misconception that we don’t love our family and we’re willing to let them die.

And that’s not really the case. We’re trying to get treatment because we do want to help them keep living. It’s just we have a certain reason why we don’t want that treatment. 

What are ways you would cope with that in terms of the difficulties of the bias or the misconceptions and even being a caregiver, making sure you have time for yourself, taking care of yourself as well? So what are ways that you cope with that or different strategies that you use?

Okay. So I had gotten into holistic self-care a few years back, and that is really important to care for ourselves as caregivers because we’re always pouring into others. Even when we don’t try to, we have hearts for caring for other people. And even if they’re not even our own, we care. We don’t want to see anybody hurting or in pain. So we’re looking for ways to support others and bring solutions to a problem. And we don’t realize it, I think. And then we’re always pouring, pouring, pouring. And at times when that cup gets empty, we don’t even realize it then. And then we’re wondering, “Well, what’s wrong with me? Why do I feel this way?” Well, I’ve been in that situation and I had to come to the realization that I have to know my limitations.

And I’ve also used essential oils, journaling, emotional freedom technique. It’s called EFT tapping. I read my Bible. I try to fill myself up on the spiritual level because […] If I don’t have the strength to take care of myself, how in the world am I going to have the strength to take care of others who need me? And then if I’m overflowing, I’m doing even better. So I’m really going to be looking out for people. So I try to encourage, not only, I try to utilize those tools that I have, but then also tell my loved ones who I care for, “Look, you guys need to remind me to care for myself too.” And they do. They really do. And I do appreciate that.

What is one advice you would give to caregivers going through the same situation?

Man, it’s hard to just give one [piece of] advice, but I think it would be very important to just care for yourself. Don’t feel guilty. Do it unapologetically. If you need that timeout, take it. Even if someone is suffering, and I know that sounds hard, but if you can’t do anything, if stuff is out of your control and you’ve done all you can, then you got to create those opportunities for yourself. Just like you create opportunities for your loved one to live as normal life as possible, you have to create those opportunities for yourself.

So I like to think about a scripture that comes to mind is “ Love your neighbor as yourself.” 

Most people think that that means when you love your neighbor, you’re putting them first and you’re doing all these things. But then they forget about the second half where it says “love yourself.” You have to love yourself first in order to know how to love other people because you won’t let nothing happen to yourself if someone comes and tries to mistreat you. So you won’t do the same thing for someone else. You can’t mistreat yourself. It goes full circle. Take care of yourself. That’s the biggest thing.