Heather Halsey Dye shares her experience as a mother and caregiver to her daughter with spinal muscular atrophy (SMA). She reflects on the shift from guiding a child to partnering with an adult, the challenges of balancing advocacy and self-care, and the importance of celebrating joy in everyday life.
Transcript
My name is Heather Halsey Dye, and I am a parent, a caregiver. I’m also a pastoral counselor and a licensed mental health counselor. I’ve also been a parent for Halsey.
She’s been in my life now for 27 years, which I keep forgetting we’re 27 years in. But she has been a part of my life and is my firstborn child. I’m also kind of an advocate, representative, and helper for all the things that she needs me to be. We’ve developed that long through the whole history of our life together as mother-daughter.
So I think for the most part, caregiving for an adult with SMA, there’s a lot of things that really just don’t differ. And I say that because they’re first and foremost, you’re giving devotion. You’re giving love. You’re giving time. You’re giving commitment. You’re giving advocacy. You’re giving empowerment.
All the things you want for your child as a mother or a caregiver, you’re giving to the person that you then invest time to give caregiving.
What does change when you move into caregiving for an adult?Is the dimension of your roles. Who are you to whether it’s your child, who are you individually, and who is your child now an adult becoming individually? There are some changes in the physical aspect, right? The physical — what I give to the effort or I give to the needs.
The other thing is you switch gears from doing all of the kind of preplanning, thinking, doing to becoming a partner in that. You start to become again the advocate. As a child, you’re doing kind of the steering. And then as an advocate, as a parent, or an adult caregiver, you’re really becoming a partner, and you’re taking in that space where we do we need to meet together to cause empowerment.
Or maybe sometimes it’s just even combating fatigue in a day. Like, what can I take from your plate, and what can we do together? That sort of thing.
So for me, when I’m practicing self-care in relation to being a caregiver, I know I’m an outward processor, I tend to give all the things outwardly because I’m taking it and I’m letting it go. I let it out, I let it go, and I let it rest. So that’s how I work, whether it’s to those I love, to another counselor, to those folks. You really need to let it out, right?
But I know that there are a lot of people that I call inward processors, keeping it on the inside, thinking about what their day’s been like caregiving, what the schedule’s going to look like, how they’re balancing, you know, other family members or other things. There’s a lot of that.
And those people I encourage — go seek help, go seek a counselor, go seek someone. The same way our outward processors are doing it. So for me, it’s really touching base with all those networks and being OK with it. Like giving permission to say, “Oh, we can talk to a lot of folks.”
The other thing I would be encouraged to tell people who are in that caregiver, but also care-receiving, community is the thank you, right? To thank people, encourage that they are lifted up, right? To being committed, to being constants, to being there and willing to provide all the time, but also all the joy; like, get all the celebration that you can get.
I think all too often we leave celebration of that journey until it’s, you know, we’re way into it. And I think people need to celebrate the successes, bit by bit, because life with SMA throws things at you that are unexpected. And I think, you know, getting through those, the time that you take to celebrate makes a huge difference in the world of getting care and also giving care.
For caregivers, that bond that you get to create together, that force becomes just a part of life itself, right? That enduring force is what keeps the caregiving as a relational tool, but also just encouragement for one another that each of you have this individual path that gets to be lifted up by the bond that’s created there.
