Today we’d like to introduce you to Mary Reed
Hi Mary, please kick things off for us with an introduction to yourself and your story.
Life took a catastrophic turn in December 2015 when our daughter Catherine was born with severe medical complications, leading to a challenging 13-week stay in the NICU at CHOA Scottish Rite. It is a testimony to the excellent care she received from her doctors, nurses, and respiratory therapists that we were able to bring her home on a beautiful spring day. Our family adapted to a new reality centered around Catherine’s extensive medical needs, which include a feeding tube, a suctioning machine, a pulse oximeter, a concentrator, oxygen tanks, and the numerous supplies that accompany each piece of equipment. Non-verbal and non-mobile, with global developmental delays, Catherine requires round-the-clock care which is mostly provided by my husband and me. It is due to angels in our community that our family has stayed strong and united nine years into this arduous journey.
Catherine cannot swallow to clear her airway, so she has to be closely monitored at all times without exception. A suction machine must always remain within arm’s reach to ensure her safety.
As someone who is deaf and depends on a cochlear implant and a hearing aid for listening and spoken communication, I cannot rely on hearing technology at night time. Suppose I fall asleep unaware that these devices have detached or run out of battery, and Catherine’s monitors are signaling respiratory distress? That risk is too great. Thus, nighttime responsibility falls on my husband, who sleeps on an air mattress beside Catherine’s bed, always on alert to her breathing and alarms. Despite constantly interrupted sleep, he still faces a full day of work the next day.
Opportunities for extended respite are extremely rare, leaving my husband and me in a relentless cycle of 24/7 tag-team caregiving. This has had profound implications on our marriage and our older two children, Cecilia and Charles as well as our aging parents, all of whom need our presence in their lives.
Full-time caregiving renders caregivers feeling isolated from their communities, taking a toll on their mental, physical, and economic well-being. One particularly lonely day, I turned to Google and Facebook for yet another random search for local respite options—despite knowing how limited they are. This time, however, something remarkable happened: I discovered Life House Atlanta.
While its website made it clear that Life House Atlanta was not yet a brick-and-mortar facility, I reached out via online contact form. An immediate response from its Director, Dr. Kathleen Fleiszar, led to a Breakfast meeting at Broken Egg Cafe in Spring 2021. From there, life took another wildly unexpected turn, this one favorable!
Heartened to find a group of volunteers who understood my family’s desperate need of respite, I joined the Life House Atlanta team with unbridled determination to build the first freestanding pediatric respite house in the state of Georgia for children with profound medical needs and their families. At no cost to the families, Life House Atlanta will be fully staffed, including skilled, professional medical care for children whose needs necessitate round-the-clock caregiving. This care is most often provided in home by parent caregivers who have little to no opportunity for respite.
Life House Atlanta is affiliated with a nation-wide effort to build pediatric respite homes in each state. The umbrella organization is the National Center for Pediatric Palliative Care Homes, and its public facing side is Children’s Respite Homes of America. With these efforts underway, substantial relief is coming to family caregivers who are unseen and underserved in our society.
Can you talk to us a bit about the challenges and lessons you’ve learned along the way. Looking back would you say it’s been easy or smooth in retrospect?
Often, I remind myself, “If it were easy, everyone would do it.”
Fundraising is not for wimps! It is certainly a daunting task to raise up to $10 million which is what it will ultimately cost to open a state-of-the-art pediatric respite house, and keep it operational on an ongoing basis. Undeterred, the Life House Atlanta team continues to go onwards and upwards towards the day when we can open doors to children with life limiting illness and their families.
Thick skin is a must for every successful fundraiser, and I’ve developed one over time. Asking for donations was far out of my comfort zone, but my role as Board Chair of Life House Atlanta has given me opportunities to learn from experience, and from other fundraisers I have been fortunate to meet along the way.
Wise management of time is a necessity as I am juggling full time caregiving of Catherine with Life House Atlanta and a part-time job in medical building. The constant challenge of maintaining my schedule has reinforced the importance of prioritization, sacrifice and self-care.
Can you tell our readers more about what you do and what you think sets you apart from others?
Serving as the Board Chair of Life House Atlanta has been a journey of continuous growth, with one steep learning curve after another. Along the way, I’ve picked up skills that encompass those of an event planner and grant writer to graphic designer and database manager. I’ve stepped into roles as a social media content creator, communications strategist, and public relations spokesperson—just to name a few of the many hats a nonprofit Board Chair wears.
It was especially empowering to teach myself, from the bottom up, two software platforms, MailChimp and Canva, both of which I now use extensively for Life House Atlanta.
Full time caregiving never stops, so Catherine, with medical equipment in tow, has accompanied me all over the place to promote Life House Atlanta. I have appointed her the “Ambassador for Life House Atlanta.”
I am proud that with all hands on deck, the Life House Atlanta team raised over $100,000 in 2024, which brings our total assets up to over $400,000. We still have a long way to go, but are greatly encouraged by the response from the community.
Can you talk to us about how you think about risk?
It is a leap of faith to join a fledgling 501(c)(3) non profit, and commit to building it from the ground up. Joining Life House Atlanta’s team is a huge investment of my time and resources,
There are many nonprofits in the city of Atlanta that serve children with special needs, and Catherine benefits greatly from a handful of them. However, Life House Atlanta is the only non-profit that will fill a much-needed gap in the state of Georgia. It will provide respite from the time of diagnosis to the age of 18 years for children with life-limiting illness and their families. The model is to provide up to 30 days of respite a year at no cost to each family.
Except on rare occasions, my husband and I don’t get the chance to go on dates. We haven’t been to the movies together in years, and traveling as a couple feels like an impossible dream. Our marriage has become a permanent tag-team partnership—two cruise ships passing in the night. We are in desperate need of respite, and that is what drives me to every task, meeting and fundraiser I undertake for Life House Atlanta.
I am profoundly grateful to everyone who takes the time to listen to my story and considers supporting Life House Atlanta. I recognize that giving to a cause still in its early stages—without a physical building yet—is an act of faith.
Accountability to our donors is always at the forefront of my mind when fundraising for Life House Atlanta. It’s important that every donor feels confident their contributions are being used in the most impactful and responsible way. This means making strategic decisions about the best paths to take to ensure Life House Atlanta continues to move forward to fulfill its mission.
With a significant amount of funds raised to date, Life House Atlanta is poised to provide direct services to families in the community who are in earnest need of it. Our team remains focused on securing a location upon which to build or renovate a freestanding pediatric respite house. Until that time, we are currently working to bring respite directly to the community allowing parent caregivers to enjoy a break from the all-consuming care their medically complex children require.
Contact Info:
- Website: https://www.lifehouseatlanta.org
- Instagram: lifehouseatlanta
- Facebook: https://www.facebook.com/profile.php?id=100081564102583
- LinkedIn: Life House Atlanta
- Youtube: https://www.youtube.com/@LifeHouseAtlanta
Image Credits
Two pictures, if used, can be credited to Sarah Eaves Photography. 1. The Personal Photo (The one in which I am showing Catherine the garden) and 2. The picture of my clapping to Catherine, while she is playing on a keyboard in the kitchen.
All other photos are mine. If you feel another photo is better suited for the personal photo, please feel free to substitute it with that picture.
The logo of Life House Atlanta is included as well.
One picture I included is at a Fundraiser in which Ernie Johnson, Jr. spoke in support for Life House Atlanta, and presented Catherine with a bouquet of beautiful flowers.
