Story & Lesson Highlights with Mary Reed

We’re looking forward to introducing you to Mary Reed. Check out our conversation below.

Mary, we’re thrilled to have you with us today. Before we jump into your intro and the heart of the interview, let’s start with a bit of an ice breaker: What do the first 90 minutes of your day look like?
The first 90 minutes of a typical day…

First! Coffee! It’s a beeline from my bed to the coffee machine. Two or three cups usually do the trick.

Then, it’s all about Catherine, who can now stretch her arms out for me to pick her up. But, before I can, I need to unhook her from multiple pieces of medical equipment that help keep her stable through the night: the feeding pump, farrell bag, and pulse oximeter. Catherine also often requires frequent suctioning in the mornings to clear secretion build up in her airway.

If we have time, I let Catherine sit on my lap, facing forward, for her “Catherine dance.” This is when she swivels her body back and forth for much-needed vestibular input. While her brain craves movement, her body cannot follow. The ‘Catherine Dance’ is her way of moving her body in a way that she can control.

Catherine’s days are filled with therapy sessions and appointments, so we don’t always have the time for a ‘Catherine Dance’ in the mornings. In a rush to get to places on time, I quickly dress Catherine, brush her hair and wash her mouth, and make sure her therapy bag is in the car, with the wheelchair secured.

Can you briefly introduce yourself and share what makes you or your brand unique?

Life took a catastrophic turn in December 2015 when my husband’s and my 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 of five 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 nights of interrupted sleep, he faced full days 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.

Appreciate your sharing that. Let’s talk about your life, growing up and some of topics and learnings around that. What’s a moment that really shaped how you see the world?
When Catherine was born and admitted to CHOA’s NICU for a grueling 13-week ordeal, our family and friends from every part of our lives rallied around us. They provided unwavering support through prayers, visits, meals, and gifts. Their overwhelming generosity was a lifeline, playing a crucial role in helping our family endure Catherine’s catastrophic birth defects.

Experiencing such profound kindness shifted my perspective. Pettiness and grudges melted away as I recognized what truly matters: the bonds that unite us, lifting each other up to navigate life’s challenges.

Nobody goes through life unscathed. Kindness and generosity to one another is how we, in the words of Prince’s song Let’s Go Crazy, get through this thing called life.

Is there something you miss that no one else knows about?
My husband and I are united in our goal to give Catherine a big life. We want her to see and experience the world in all kinds of ways.

The reality, though, is Catherine requires 24/7 medical monitoring due to her inability to swallow, which puts her at high risk of choking on her own secretions. This keeps us in a perpetual state of vigilance. We’re always on edge, ready to leap into action to clear her airway at a moment’s notice.

I do long for the days when I could come home and fully unwind. I miss sinking into the sofa with a book or Netflix, free from the weight of someone’s survival resting on my shoulders. Spontaneous moments—like taking a quick shower or running errands—now require careful coordination. I need to ensure my husband or one of Catherine’s older siblings is available to watch her, or I must plan around her therapy schedule.

I deeply miss the simple joy of a date night with my husband—going to the movies or enjoying a leisurely dinner together.

We still find time for Netflix and Amazon Prime, and we manage errands and shopping, but only after ensuring Catherine’s care is securely in place. Her well-being is our priority, and every outing or moment of rest is has to be carefully orchestrated around her needs.

With little to no opportunities for extended respite, there is no such thing as ‘coming home to fully unwind.’

Alright, so if you are open to it, let’s explore some philosophical questions that touch on your values and worldview. What’s a belief or project you’re committed to, no matter how long it takes?
I am committed to building a freestanding pediatric respite house for parent caregivers in Georgia.

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.

Okay, we’ve made it essentially to the end. One last question before you go. If immortality were real, what would you build?
If immortality were real, I would commit to helping build a pediatric respite house in each of the 50 states of the U.S. That is the goal of the National Center of Pediatric Palliative Care Homes, and its public facing side, Children’s Respite Homes of America.

Contact Info:

• Website: https://lifehouseatlanta.org
• Instagram: @lifehouseatlanta
• Linkedin: Life House Atlanta
• Facebook: Life House Atlanta
• Youtube: Life House Atlanta