A House That Love Built

The Lemieux family: Mark and Sara, Sienna and baby Sloane

The Ronald McDonald house is often described as a home away from home. Houses all over the world provide a ‘home’ with a warm meal and a place to sleep for families whose child is receiving critical medical care at a nearby hospital. St. Petersburg is home to three Ronald McDonald houses for children receiving care at All Children’s Hospital. Over 44,000 families have been helped at these RMH houses. Annually 2,000 families step through one of the three doors. This organization has been in the St. Petersburg area for over 33 years; however, there is something unique about the Central Ronald McDonald House. Typically, in order to stay at a home the family has to live a certain distance away from the hospital, but the central home is different because they offer a program called Day Use. Day Use encourages families of patients at All Children’s to come downstairs and grab a fresh cup of coffee or to use their facility no matter the distance from their home. They know how difficult it is for a family to leave the bedside of their child for a long period of time.

One particular family staying in the central home is the Lemieux family, Mark and Sara. Their journey to the RMH has been a whirlwind and unexpected experience. Their daughter Sloane was born a few months ago and has not left the hospital since birth. “She hasn’t been home yet. We came (to All Children’s) on midnight on the 7th. It’s like a blur,” describes Sara.

Mark spends much of his time watching over his little one.

Just a few months ago, their beautiful daughter Sloane was born at a hospital in Winter Park, and has ever since called a hospital her home. Sloane was born with a problem in her heart and after many tests and multiple hospitals, it was determined that their little girl needed a heart transplant. Faced with the fear of the unknown, the Lemieux family reached out to friends and family desperate for advice, and as Mark says, “to help better understand the situation.” With time ticking by, every second was critical when making the decision as to where to seek care for baby Sloane. “It sets a stop watch, we are under the gun here,” Mark states.  Questions soared through their heads: Who is the best? Where should we go? Where will we stay? How can we afford everything? Who will take the best care of our daughter? And who should we trust?

The Lemieux family entered a world they never thought they would be in. Feelings of fear, doubt, hope, and love circulated around them during this confusing time. “You worry enough about having a baby and taking them home, what that’s going to cost… then you find out you have to go from one hospital to another, then to another. You know that phrase ‘feels like you’re drinking from a fire hose’ I said I felt like I was drinking from ten. My world was just shattered. Our world was shattered. It was just so much to take in,” describes Mark.

Only days after Sloane’s birth, the family traveled to St. Petersburg to save their baby, finally deciding that All Children’s Hospital was their best decision.  At the same time, there was an opening at the Ronald McDonald Central House, providing the family a place to stay while in the area.

“You hear about the Ronald McDonald house, but until you step foot in it, you don’t really know what they do…” as tears fill Sara’s eyes, she pauses. “They are amazing.” The family has called the house their home for a little over two months now.

Sara, Mark and Sloane

“Everyone has something different, they way we look at it is, if you are here, it doesn’t matter if you have a little hole in your heart that needs surgery, or you need a whole transplant or whatever… it’s not a comparison. Everyone here is terrified for his or her child. It doesn’t matter if it is going to take a week to recover or an unknown time period. You are terrified,” says Mark.

The Ronald McDonald House gives the family a comfort that is hard to describe, but easy to see. The support from the home shows in their voice when they try to stress how wonderful the welcome has been. The support shows when you see their tense shoulders start to inch away from their ears. The support shows when another resident listens. “It’s nice to have people around you that understand to some extent,” says Sara. Being able to be honest and straightforward without any awkward responses from loved ones trying to relate to them gives them an outlet to talk about their day. Sara continues, “When a friend calls or stops by… they want to know how we’re doing, but I don’t want to  intimidate them with new-found medical jargon. It’s a lot for someone outside  the situation to process. When it comes down to it, a friend just really wants to know how you are, but they don’t completely understand… even if they want to.”  Connecting to those who have the same fear and pain makes them not feel alone.

It isn’t just the residents who help the Lemieux family get through their day: the community of St. Petersburg provides endless support to their family and others using the Ronald McDonald House. A simple smile from a volunteer, a warm cup of coffee, a prepared meal waiting for them no matter what time they return gives them encouragement. “In this situation, it is a huge source of comfort. You don’t have to worry about dinner or breakfast or that stuff. You don’t have to worry about how much it’s going to cost, with the additional worry of how much the hospital is going to cost, or if our insurance is good enough… We just thought we’d have our baby and take her home,” Mark says.

Meals are prepared by volunteers or donated by restaurants in the surrounding area. Over a thousand meals have been served at the Ronald McDonald Homes in St. Pete and Tampa. Removing some pressure from the families allows them to focus on the now; they are able to spend more time with their child in intensive care and treasure every day. The home allows the family to be just an elevator trip away from their little girl. It allows them to treasure every second they have because they don’t know what the future might hold.

Some may view having their daughter in intensive care to be a horrible problem, but the Lemieux family believes that it is a good problem to have. “That’s a nice problem to have. What we mean by that is that she is still here; we are still fighting. We, right now, are fortunate; we have had two-and-a-half months to love on our daughter and hold her and have hope that there can be a better day.” Mark believes that this outlook helps them get by day to day.

Sloane with her sister, three-and a-half-year-old Sienna

In Florida, five children under the age of one are waiting for a heart transplant. Sloane is one of the five. With the help of All Children’s Hospital, Sloane’s health is improving; she is now passing out smiles  as if they were candy, and her recovery gives the family hope. Not knowing if the phone will ring or if good news will come, the family holds on.

The question of “how much longer” looms, but Mark looks at it optimistically and uses a nickel for encouragement.  “Every day you wait, you are just that much closer to the day, and that just makes me feel better. I tell people, you tell me when the next time is, somewhere, anywhere, that you find a nickel; not the nickel you left on your dresser or your kitchen counter, but one that wasn’t yours. You tell me when you can find a nickel, and that’s when I can tell you that it could be a week, it could be two months.” This analogy brings hope to Mark: the idea of waiting for something he knows he will find, but the mystery of when it will arrive remains. He continues, “I found a nickel when I started saying that, and I’ve kept it.”

Sara believes “Her perfect heart is out there somewhere… her perfect heart hasn’t shown up yet.”

Only a week before this edition was sent to the printers, we received an email that Sloane’s perfect heart was waiting for her. Her surgery went well and the couple will be bringing home their little girl for the first time in the near future.

A truly loved little girl

The Lemieux family was able to treasure the time with their daughter. While they were aching and anxious about what the future may hold for them, the Ronald McDonald House lifted some weight off of a family who had fallen. It helped them take each moment, each minute, and each day for everything it was worth.

The Ronald McDonald Houses in the area care for many like the Lemieux family, giving thousands of families a home away from home. The love, support, and care can never be measured. It is a house that love built, and a house that continues to support families because of the love from the community.

After meeting with this selfless family, I have seen that when the community comes together miracles and support are given to those in need. It may not be seen all the time, but the little things make the big.  In life, love is how we survive. The love we give and the love we receive keeps us going. Love can never be bought, it is only felt, and we can only experience it while enjoying the moments we have, no matter the circumstance. Though you may not be able to directly relate to someone’s struggle, you have the power to make it a little easier through love.

If you would like to support the Ronald McDonald House contact Central House Manager Melanie Trubey at mtrubey@rmhctampabay.com. It doesn’t matter how small you think your effort may be because to somebody it means the world.