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Alicia Buckley is a writer and entrepreneur living in Jamaica. She founded HappyDowns, a blog devoted to helping family members – especially siblings – navigate life as a carer. Alicia has many years experience as a primary carer for her sister, Shadeeza, who has Down Syndrome. Together, Alicia and Shadeeza launched a unique online store that blends fashion and art to encourage self-acceptance and perseverance. Alicia has also produced a range of guides and resources for sibling and family carers, sharing her lived experiences with the global caregiving community.

 

Tell me about HappyDowns and your series of books for sibling caregivers. How and why did it all come about?

HappyDowns actually started with my little sister, Shadeeza. So, in the beginning, as usual with us families and siblings, it’s all about sharing their story, all about our sibling. The highs, the struggles, the fights — to encourage and motivate families of children with Down Syndrome. I wanted to raise awareness about this. I wanted to educate and to show really the resilience of families like ours. But, over time, I noticed that while advocating for people with Down Syndrome is important, family caregivers like us lack our own support space.

People like me, siblings, we love and care for our brothers and sisters, but we also carry this unique set of responsibilities, emotions, questions about the future. And so that’s when I shifted the focus of HappyDowns. I created a separate platform for Shadeeza, she has her own website where she pushes her own message.

I turned HappyDowns into a place that speaks directly to family caregivers. It’s all about helping family caregivers of teens and adults with Down Syndrome live their best lives. Because the truth is you have to be your best in order to give your best.

We talk about the real stuff, the challenges, the planning, the self-care (or lack of) and the hope. It’s a space where you can be honest about the hard days. I realized I wasn’t seeing a lot of that. Most times you’ll see persons talk about the good side, which is great, but I wanted a space where we could be honest about the hard stuff. Somewhere you could also find tools, encouragement, and a reminder that you’re not alone.

That’s also what inspired the series of the books that I’ve done. The Must‑Have Guide for Sibling Caregivers shares lessons that I’ve learned along the way – really the kind of advice that I wish I had earlier on. I’m hoping that it’ll help other sibling caregivers and kind of prevent them from making some of the missteps that I did. I also have the Important Information Organizer. This helps us to keep essential details in one place, like medical information, so that you’re ready if there’s an emergency or another family member needs to bring your loved one to the doctor, they can easily access certain information. I also have the more light side: the Inspirational Coloring Book for Family Caregivers, the Activity Book for Sibling Caregivers, so you can just take a moment, color, do a puzzle. It’s light‑hearted, but intentional: a way to carve out moments of joy and relaxation in the middle of a demanding role. I have the Sibling Caregiver Venting Journal, you know, for those moments that are hard. It has prompts in it, it will ask you how you’re feeling right now to help you to work through the emotions so that you don’t bottle it up.

At its heart, HappyDowns — and everything I create under it — is about accepting your reality and then choosing your destiny. Life with a loved one who has Down Syndrome can be a lot — but where there’s life, there’s hope. We must fight, we must continue, and we must never give up.

 

What’s the hardest thing and the best thing about being a sib?

Alright, so for me personally (because I know it’s a little bit different for everybody), the hardest thing about being a sib is knowing when to draw the line. When to set boundaries so that my life doesn’t become completely overshadowed by my sister’s needs.

It’s not about loving her any less. It’s about recognizing that if I don’t protect my own space for my own goals, relationships, rest, I can’t show up as my best self for her. That balance has been tricky. Sometimes it comes with guilt, a whole lot of guilt. But I’ve also learned that boundaries are an act of love for both of us, right?

It’s also about figuring out how to prioritize myself in practical ways. So over the years, I’ve had several experiences where I had to be saying to myself: All right, if we both need medication how do I make sure I don’t just get hers and leave myself out, especially when money is tight? How do I carve out time for my friendships, my relationships? As a young adult, how do I give myself the best shot at college without feeling that I have to stay close to home, to help care for her? Even as an adult, how do I choose where to live based on what’s best for me? And not just stay in my hometown or my country because of family expectations?

And then there’s navigating family dynamics. So making sure I can contribute without taking on more than is healthy for me. Because sometimes our parents — I guess it’s the stress or they’re overwhelmed — some of their responsibility can get pushed on us. So navigating that dynamic to ensure that, you know, it’s not just one side, that everything doesn’t just fall on me.

The best thing though is the empathy that my sister has taught me. Not just towards her, but towards anybody who needs help in society. It’s like having a sibling with a disability, you can’t help but acknowledge that. There are people in less-than-ideal circumstances than you. It’s like you’re more aware, you see them, you are attuned and you try to help, right?

Shadeeza is also a loving sister in her own right. She checks in on me. She calls me every day. She does what she can to support me. She’s very big on birthdays! She’ll ensure that she calls the family members, she’ll organize a birthday get together, make sure there’s a cake, make sure there’s one or two presents. She shows up for me in those moments.

Those moments remind me that our relationship is not just about always me giving to her, but it’s about us showing up for each other.

 

What do you wish non-siblings understood about sibhood? What’s the one thing they could do to support sibs?

I wish they understood that we actually exist and that our role matters.

A lot of people are like: ‘Oh my God, you take care of your sister! Oh wow!’. I’m like: ‘There’s several of us! I’m not the only one, you know?’

So just to understand that we exist. We’re not just brothers and sisters in name. We’re often a constant presence in our siblings’ lives, sometimes for decades.

So for governments and institutions, that means them recognizing us in policy. Letting us be a part of important decisions, making it easier for us to support our siblings, for example, in a hospital or healthcare setting, or in the community, and offering practical help without forcing us into arrangements that take away my sister’s independence. I don’t think I need to be her legal guardian for some things to happen.

For insurance companies — allow us to add our siblings to our health insurance, just like we can for a spouse or child. Employers can help too, by giving us the same kind of leave that you give a parent tending to a child’s needs so we can be there for our sibs when it matters.

To everyday folks, I’d say to them siblife is layered. There’s love. There’s pride. There’s frustration. There’s joy. There’s grief. Sometimes all in the same week. We experience all of these things. We carry invisible loads. Planning for the future, quietly advocating in daily life, holding space for our sibling. While we’re trying to live our own lives.

So what we need from those folks, I think it’s simple: I just need you to see us. I need you to listen to us. I need you to include us. Ask how we are doing, not just how my sibling is doing. Don’t assume that you know our role. Let us tell you what it is being a sib. Offer practical help. Bring over groceries or a cooked meal, help with the cleaning or the laundry. These basic, everyday tasks take up time we often don’t have, and your help can give us breathing room.

We need recognition, we need inclusion, we need understanding and we need support. When those things are in place, it’s easier for us to keep showing up for ourselves, the people that we love, and it helps us to live full, meaningful lives of our own.

Support doesn’t always have to be big or complicated — it just has to be real, and it has to start with seeing us.

 

What else would you like other sibs to know?

Your life matters as much as your sibling’s. I think that is my biggest message to us. Because it took me a while to get here, so I know.

It’s okay to set boundaries, to plan for your own future, and to seek joy outside of caregiving.

You don’t just have to survive. You can also thrive. But it starts with honesty about your capacity. What can you really handle? I realized that I dove head first into caregiving. I had no idea what I was getting into. I did no assessment of my capacity. And so I have learned the hard way that it is so important.

And then you have to build a support network. Friends, other family members. Any help you can get from the government, institutions, get it. Any help you can get from foundations, disability foundations, or whatever, get the help. Don’t be ashamed.

You might feel bad that you’re not really in a position to care for your sibling the way that you probably imagined that you would be able to, but put shame aside. Put pride aside. Get the help that you need, and just remember that caring for yourself, it’s not selfish. It’s essential. You have to be your best in order to give the best to your sibling.

Find out more:

HappyDowns – Help For Family Caregivers
Books
Instagram
Shadeeza Buckley – Where Art & Fashion Collide To Encourage Self-Acceptance, Perseverance & Hope

 

 

Conversation held July 2025