Danita Jones shares her experience as a mother of four and caregiver to her daughter, who she calls “Ladybug” and lives with angioedema. She reflects on the challenges of balancing caregiving and motherhood, the small wins that bring joy, and the importance of making time for self-care.
Transcript
Hi, my name is Danita Jones, and I live in Alabama where I am a caregiver for my amazing oldest daughter, who we lovingly call Ladybug. And I also had the pleasure of writing for the Angioedema News column, A Caregiver’s Heart.
Balancing the role as a caregiver and a mom — I’m actually a mom of four — so it can be quite challenging at times because the other kids sometimes get sick too. We deal with teenage things. We deal with very active schoolchildren. Currently, our oldest son is in college, and so there are different aspects and challenges in our life that we kind of have to find the balance for.
My husband is an incredible ally, and having the person that can kind of live the experience with you helps balance it. But there are times when I’m still very tired. There are times when I feel like I’m not balancing it well at all, but I sometimes, you know, look for the little wins.
When we are balancing between caregiving, between moming, between working, between, you know, being at home, so it can be challenging at times, but the little wins help.
One of the things that we try to teach Ladybug in regards to herself and being independent, because we know we’re not going to be around forever.
Eventually, she may want to, you know, move out of the house or go to college or start a career. And so we begin to do little things, like allowing her to advocate for herself when she is in the presence of a caregiver or medical caregiver.
If she’s at the hospital, we begin to show her that while she does have some physical limitations — we don’t want her to overdo it, obviously — that there are still ways for her to have fun as long as she rests in between that fun.
There are other aspects that we try to make sure that she knows, that she has her own voice, and we continue to encourage her that she is not her disease, that she is this young woman, or young teenager, I should say, that is living this journey, but it doesn’t define her.
We try to encourage her to know that it does not limit who she is, but, in fact, gives her a bit of a champion way to go about life in spite of. And so we continue to do that, and some days are more encouraging than others. But at the end of the day, we just want her to feel empowered to be who she is.
My advice to other angioedema caregivers, oddly enough, is just to find moments to get your own rest, to get your own moments where you can have to yourself.
Oftentimes, we can find ourselves getting lost in the care of the people that we love. We want to pour everything we have into them, not realizing that when we pour out everything, it leaves nothing for ourselves.
So while you are, you know, writing down everything, while you are logging everything, while you are training or carting them back and forth to their medical providers or hospitals — even if you find 10 minutes, 20 minutes a day to do something that does not require the mental and physical effort it takes — you just need to take a moment.
Yes, there are many things we have to do. Yes, your plate may be full. Take time for yourself, even if it’s just a little bit, and you’ll be shocked how much better of a caregiver you can be. Because once you are filled back up, you can continue to pour into the person you love.
