The Sunday Series (10), With Mark Brodinsky

Sunday. It’s your turn, your story, a chance for me to pour my life into yours.
And as we go full steam ahead into the season of miracles, I can’t think of a better story to share.

The Sunday Series (10): Against All Odds

Sometimes you love with all of your heart, sometimes you hope with all of your being, sometimes you pray with all of your soul and it still doesn’t work. But sometimes it does… and a miracle occurs.

Meet Elizabeth Gardner.

“She won’t survive the pregnancy. If she does she’ll die in delivery, if she does, she won’t live past the first year of her life.”

She won’t, she won’t, she won’t.

This is what the doctors at the Children’s Hospital of Philadelphia were saying to Lisa and Chris Gardner, midway through Lisa’s very first pregnancy in 2004. After a Level Two ultrasound at 20 weeks, it was determined their baby most likely has Tar Syndrome – Thrombocytopenia Absent Radius. Tar syndrome is a rare genetic disorder, affecting less than 1 in 100,000 newborns and characterized by the absence of a bone called the radius in each forearm. Almost more dangerous, those affected also have a shortage of blood cells involved in clotting. Life-threatening episodes of severe bleeding can occur in the brain and other organs, especially during the first year of life.

With all these odds against them, the doctors were giving Lisa and Chris 48 hours to abort. But the Gardner’s had other ideas.

Though scared and angry about the diagnosis, Lisa did some research and found a blog by another mother whose son suffered from the same condition, but he is now 5-years-old and doing OK. The story gave her hope. Her husband Chris was determined to see it through and both he and Lisa turned to faith and prayer and made their decision… move forward with the pregnancy.  On December 16th, 2004 Elizabeth Faith Gardner is born.

A normal human being comes into the world with anywhere from 150,000 to 300,000 platelets of blood, Elizabeth has only 7 thousand. Immediately the new baby girl was given two platelet transfusions and spent a week in the hospital. But then she came home, and for the next six weeks, life was good, all normal. Until one night, Elizabeth sneezes, there is blood in the crib. This one normal human physical reaction is the beginning of the end for whatever we all might refer to as a normal existence.

Elizabeth spent the next two years in and out of critical care, her immune system very low, there are countless platelet transfusions. But by age two the toddler was making her own platelets shedding some light into the darkness the Gardner’s were living through. But now trying to walk, Elizabeth had to deal with the other side of Tar syndrome, the limited bone development which affects her arms and her legs. Elizabeth’s bone development in her legs and her desire to walk were putting severe pressure on her joints and legs, the doctors in Philadelphia said Elizabeth shouldn’t be walking at all, and she will never be like other children.

The very definition of facing life head on is to do one thing, simple in concept, difficult in practice…never give up. The Gardner’s heard about the Rubin Institute for Advanced Orthopedics at Sinai Hospital in Baltimore. Over the next six years, Dr. Shawn Standard and his team performed multiple surgeries to correct bowing in Elizabeth’s legs, hip dysplasia, ankle surgery, knee reconstruction, the list goes on and on. The number of casts, wheelchairs and walkers are too many to count. Not to mention the surgeries to try and lengthen Elizabeth’s arms, correct her hands, give her the ability to hold things, to reach out just a little farther, be a little stronger, experience the same freedom other children do.

Elizabeth is beyond resilient. But for her mom, for any mom watching their child face hardship, it’s an emotional rollercoaster. “The emotional part of it is very difficult”, says Lisa. “I think I could deal with one thousand surgeries without having to deal with Elizabeth not being included, left out, not being able to dress herself, she even gets bullied.” Lisa explains it’s not always on purpose, but it’s the mental and emotional things like being told by others her arms are too short and told she can’t participate in certain activities. Lisa says sometimes the things other kids say hurt Elizabeth, because she so wants to be just like them. “If I had to go through what she has, I’d be in the fetal position”, Lisa says. “She’s a hero to so many people, including me and she doesn’t even realize it. She doesn’t realize the impact she has on people. She’s smart, funny, compassionate, she has this genuine way about her. I say if one day she doesn’t own a company, or run a country, it will be a waste of time.”

Elizabeth is showing us all how it’s done. Her mom says she is feisty and determined. Enduring so much in the first nine years of her life, Elizabeth is now walking without a walker. She is making serious strides all on her own and most importantly, she is spreading the joy in ways which are making a difference in the lives of other people. She talks to other children at the hospital, encouraging them to get better, giving hope. She is a virtual star at the Ronald McDonald House of Baltimore, where she and her family have spent countless hours during surgeries and recoveries. She has an uncanny ability to sooth her peers, other children facing the greatest challenges of their lives. Elizabeth works hard, sacrifices so much of her childhood to get better and it is paying off, not just in physical improvements, but being recognized for her strength by those who see her every day.

She is now enrolled at Cedarmere Elementary School in Reisterstown and the Cedarmere Fun Walk this year, led by Elizabeth, brought out 400 children who walked with her. The theme of the walk was Super Powers, because not only Elizabeth, but all children have the power within them, it’s just that this amazing 9-year-old girl puts it on display every single day. At the Save a Limb ride and walk this past October, this girl with her super powers raised more than $6,000 for the cause.

Each December 16th, Elizabeth’s birthday is a reminder to Lisa of a huge goal. Each birthday Lisa makes a note to return to the doctors who told her Elizabeth won’t survive childbirth, won’t live past her first year, won’t ever be like other children. She won’t, she won’t, she won’t. Except Elizabeth has other ideas. Just this year the Gardner’s were told their daughter has the same life expectancy as any other child. It’s the kind of statement, less than 10 years into this journey, which gives you pause and makes your heart skip a beat, maybe many beats.

And for Elizabeth the beat goes on. There are plans for future arm lengthening surgeries. Lisa says her daughter can gain 4-5 inches on each arm. That’s huge. She could gain the ability to feed herself easily, dress herself without struggle, even drive her own car. It’s possible. All is possible if you just believe. The Gardner’s do. They have another daughter as well now, Sara Grace. Another miracle, born two years after Elizabeth. Sara is free of abnormalities and inspires her older sister every day. Just recently Lisa found Elizabeth standing on top of the shed in the back of their home. Sara helped her sister climb up a tree and then helped push her up on top of the shed. A moment of victory for Elizabeth who already has climbed so high in life, endured so much, she can look down at her multitude of accomplishments with pride.

Still the future is uncertain and not without fear. Elizabeth is scared of future surgeries planned on her arms and hands, she doesn’t want to lose what she has already gained in flexibility and capability. The question for the Gardner’s…do they modify Elizabeth, or simply modify the world around her. Lisa and Chris will rely on their faith, their church, the doctors and the will of their incredible daughter to make the right call. The ultimate goal is to give Elizabeth exactly what she wants, to be just like other children.

Yet what Elizabeth may not realize is she’s already there and then some. What physical challenges she might have are made up for a thousand times over in the intangibles which radiate from her: to love, to laugh, to share joy, to encourage others, to show strength and courage, to be a beacon of light for other children suffering in darkness. Elizabeth does all of this and so much more.

She is a little girl with a heart ten times her size. A little girl who is larger than life. A miracle defined.

Until next time thanks for taking the time,

Mark Brodinsky

Mark Brodinsky, Author
It Takes 2. Surviving Breast Cancer: A Spouse’s Story
#1 Amazon Best Seller
markbrodinsky@gmail.com