ONCE UPON A GENE - EPISODE 061 - The Glass Child - Being a Sibling to My Rare Disease Sisters with Madison McLaughlin
As a young girl, Madison McLaughlin made her way to LA to pursue acting and she's held roles in Chicago PD, Supernatural and Arrow. But she's also a rare disease super hero and celebrity in our community- the rare disease community. Madison's three younger sisters have been diagnosed with hypomyelination with brainstem and spinal cord involvement and leg spasticity (HBSL).
EPISODE HIGHLIGHTS
Can you share a bit about your sisters?
I'm the oldest of four girls. Marissa is 18, Mallory is 16 and Mahrynn is 14. Marissa and Mahrynn have an ultra-rare disease that affects less than 25 people in the world called HBSL. Mallory is also a carrier of this disease. Mallory has never had any symptoms and is typically developing. Marissa and Mahrynn use mobility assistance such as walkers and wheelchairs, but they're not affected cognitively.
When considering yourself a caregiver, how does it affect you in realizing that as your role?
I was six years old when Marissa first started showing signs of HBSL. It was overnight that she was typically developing and then had a vaccination that, because of her underlying disease that had been identified, changed everything. One second, we were getting chocolate ice cream and the next my parents were rushing Marissa to the ER. It was interesting growing up that I never considered how it affected me and how the new levels of responsibility and maturity affected me. I was lucky that my mom was open and gentle. Looking back, it helped me a lot to feel included. There was no question that I would go to long doctor's appointments, entertain Marissa while the doctors talked to my parents, gave up things I wanted to do that interfered with Marissa's needs. When I was about 19 years old, I hit a low point and started therapy. I had always cared for everyone else, but never myself. My therapist identified me as a caregiver and that helped me to honor that and manage stress, understand tougher times, set boundaries and better communicate with my mom and sisters. There's a term "glass children" that suggests typically developing children are often looked through and that they're seen as strong and great helpers. It's easy to take that on as your entire identity.
What have people done for you to make you feel special?
My mom has always been honest and vulnerable. I was fortunate to have people around me who understood the value of vulnerability, transparency and honest communication. It was refreshing to know my mom was going through what I was going through and didn't have the answers. I was in every doctor's appointment and I was always comfortable asking questions. Every question I had, my mom always made sure I could ask. She never hid anything and always explained things in a way that I understood. In terms of individualizing our relationships, it was a million little things. As a teenager, I hated that she held us all equally accountable for our responsibilities. That equal sense of accountability helped my sisters and I to band together and it strengthened our bond and relationships.
When did you start therapy individually and as a family?
Mallory was the first to start because she had visible things she was going through. When she was about 6 years old, Mahrynn had a traumatic hospital stay and no one thought she was going to make it. It took a toll on Mallory and my mom started her in therapy. I also started therapy individually as a teenager because I wasn't dealing with things as well as I thought. My mom sought out a great therapist for the whole family so everyone had individual and group time as necessary and it really helped us with communicating and setting boundaries.
What boundaries have you set for yourself?
The biggest was that when I moved out to have space to do things I wanted to do. It came with a lot of guilt, but it was something I needed. Communicating when I need space or time is important so there's no hurt feelings and I can take time for myself.
Are you a part of groups with siblings like you and is there a common thread among siblings?
I'm not in an organized support group, but my family is trying to launch our own version of that through our new foundation for HBSL, the MacPac Foundation. The people I've met have been largely through Global Genes events. What I hear a lot is that siblings don't want to feel like a burden. The best thing to do is to equally acknowledge every kid individually and ensuring attention is shown equally.
LINKS AND RESOURCES MENTIONED
Once Upon a Gene Channel with The Disorder Channel
Once Upon a Gene with The Disorder Channel on YouTube
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