Celebrating the people who got me to my 28th birthday

Today is my 28th birthday!

As anyone in the SMA community knows, age is not a privilege guaranteed to those of us living with the disease, so every birthday — and every individual day — is worthy of celebration. But 28 years of life is not something I could have accomplished on my own, and I think this fact gets forgotten sometimes.

I have thrived with SMA for this long because of the people God has blessed me with, who have loved and cared for me in some way, big or small. They are heroes and role models in this story, and for my birthday this year, I’d like to celebrate them.

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Meet the guests of honor

For starters, I have an amazing team of doctors and home-care nurses who have provided outstanding, competent, and empathetic care. I realize how fortunate I am to have built a team of people I trust and who treat me as a real person.

My medical team also collaborates closely with the rest of my care team, which includes pharmacy staff, equipment suppliers, case managers, family, and many others who understand that managing my care is a team sport. We all must work together to ensure we’re maintaining a high standard of care and quality of life that keeps me healthy enough to enjoy a fulfilling life.

Heading up this team alongside me is my caregiver of choice and hero extraordinaire: my mom. With the most experience in all things Halsey and the unmatched love of a mother, there’s no one better to help me navigate life with a rare disease. And I do need lots of help.

Simply flipping a light switch when I wake up is a feat my body can’t accomplish. Likewise, I can’t administer my own medication, take myself to the toilet, wash my hair, put on fresh clothes, or prepare a meal, just to name a few activities beyond my physical capabilities. I can decide when and how to do these things, but someone else must perform the action for me.

Even with the things I can do, such as typing emails and other messages, choosing an outfit from the closet, or refilling prescriptions online, I still require total assistance getting to where I need to be and accessing the tools I can use. And with a health condition that takes up so much time and energy, being able to share the load allows me to use my body’s limited resources where they’re most needed and have enough left to partake in daily joys, special occasions, fun outings, and reasons for celebration.

All throughout my 28 years, Mom has primarily been the one to meet these needs for me. She’s always present in my life, and I can depend on her in any situation, from diagnosis to adulthood, and in both the hard and beautiful moments. She has quite literally kept me alive this long, and her devotion to me allows us to not only survive life but also fully enjoy the time we get to spend together as our bond grows ever stronger.

Some of the greatest supporters of my wellness are the ones who step up to support both of us and embrace our relationship. When one of us is well cared for, we both benefit, so those who have supported my mom deserve their own special shoutout in this celebration.

Let the party begin

There are countless people who have in some way contributed to the success of reaching this birthday, and anyone not listed somewhere in this column is not overlooked. There are simply more people than I can fit into this space and do proper justice to.

Family, friends, medical professionals, and even strangers have shown up in extraordinary and ordinary ways to offer prayer, love, encouragement, compassion, advocacy, accommodation, time, talent, resources, coffee, connection, empathy, and so much more. I can’t even begin to quantify these gifts, and my gratitude can’t be expressed enough.

Whenever we have these precious opportunities to celebrate a birthday, I hope we also remember the support networks that helped make that day both joyous and possible. We all have someone — hopefully lots of someones — who have made our lives better and maybe even helped us achieve the impossible.

If you are one of those people, to me or anyone else, thank you. You are not forgotten, and you are part of today’s celebration, too.

Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.