For TCU groundskeeper Jared Lindsay, the waiting was the hardest part. Lindsay and his wife, Lauren, would wait for a test result.
Then they’d wait for another. Then for a surgery date. Then another.
The whole time, their minds would race.
Working in between and around taking care of three children with medical conditions nearly pushed the couple to their breaking point, as their five-year-old daughter, Marleigh, went through treatments for Scoliosis.
“We quickly realized that the world doesn’t slow down when you’re upset and hurting,” Lauren Lindsay said.
But the Lindsays stayed steady.
Marleigh was diagnosed in May of 2013, rattling the Lindsays once-normal lifestyle. Doctors discovered a 38-degree curve in her spine, a Chiari Malformation and a severe syrinx. A Chiari Malformation is where the bottom part of the brain crowds the top of the spinal cord. A syrinx is a fluid-filled cyst along the spinal cord.
Shortly after Marleigh’s diagnosis, the Lindsays’ three-year-old son Jack was also diagnosed with Scoliosis, with an 18-degree curve in his spine. Recently, their two-year-old daughter Harper began to show signs of the same Chiari Malformation doctors found in Marleigh.
Genetic testing revealed that the Chiari was likely passed from Jared’s side of the family; his cousin was diagnosed with it about seven years ago. The results also revealed scoliosis on Lauren’s side of the family.
By July of last year, the Lindsay’s knew they needed a plan.
After already taking off of work from the TCU Physical Plant for various doctor appointments and getting word that Marleigh would need to undergo surgery for her Chiari in August 2013, Jared Lindsay weighed his financial options.
The Family Medical Leave Act provided the amenities the family needed.
FMLA allows employees like Jared Lindsay to take unpaid, job-protected leave for specified family and medical reasons, according to the FMLA website. He also continues to receive group health insurance coverage under the same terms and conditions as if Jared had not taken leave.
Leave may be taken in periods of whole weeks, single days, hours and in some cases even less than an hour. For the Lindsays, this flexibility was ideal for their family.
“It is hard to accrue sick/vacation time when you have three young children, so FMLA allowed me to keep my job and still be there for my family,” Jared Lindsay said.
Although the FMLA secures Jared Lindsay’s job, it doesn’t keep him from worrying about his children.
Jared, 30, and Lauren, 24, have three children. They married in 2007. As a young couple, they have dedicated their lives to supporting their growing family.
Lauren spends her days with her children full-time, while Jared picked up a second job as a photographer. He’s also the TCU Rugby Club’s photographer.
Keeping up with three kids and their concern over their health have had the greatest impact on the parents.
Rather than “feeling” much during the first few months of surgeries and appointments, the couple just got tired.
“Fear of the safety of your children might be the worst fear that exists,” Jared said.
The parents work to give each other breaks they wouldn’t otherwise have.
Jared edits photos during his lunch breaks on TCU’s campus so he can focus on his children when he gets home.
Lauren home-schools Marleigh for kindergarten to keep up with her medical needs, while keeping up with the two other toddlers.
“He watches the kids while I take a long shower or spend a couple of hours out at a coffee shop with a good book, whatever I need to clear my mind and regroup,” she said.
The two oldest kids have weekend sleepovers at Jared’s mom’s house to give the couple time to regroup and relax each week.
Jared said the support and help they have gotten has been tremendous.
Money. Material things. Status. All of those things are what Lauren describes as having the least importance in the family’s lives.
Extensive amounts of unpaid leave time, along with the addition of medical bills, makes for a uncertain financial situation for the Lindsays, but Lauren said the support that’s most important isn’t tangible. That’s a lesson she tries to on to her children.
“Now more than ever we have the opportunity to teach our children about the meaningful aspects of life; creating real memories, living in the moment, and finding happiness wherever you’re at,” she said.
They most cherish making memories outdoors. The couple enjoys educating the children through things like planting in their garden and going on barefoot hikes.
In August, when Marleigh had her surgery, Jared had to take three weeks off work.
Support flooded in from strangers that followed the family’s story on Lifeofthelindsays.blogspot.com.
They’re hoping for similar thoughts as they begin a new year of uncertainty.
Marleigh recently had her 6-month post-operation MRI under anesthesia on March 19. The Chiari decompression she underwent this summer was successful and began relieving pressure and allowing proper cerebrospinal fluid flow.
Doctors also said the syrinx in her spine had showed signs of shrinkage. Although still very large, it had decreased almost 40 percent.
The family hopes the syrinx will continue to decrease. If not, invasive brain surgeries could result in the future.
Marleigh will have to deal with heavy physical restrictions — including running, jumping and climbing — for the next few years.
“This is obviously difficult — A.K.A. impossible — at times for a five-year-old,” Lauren said in a Facebook post in March.
Marleight won’t ever be able to play a contact sport or ride a roller coaster at Six Flags. Jack will have yearly MRIs monitoring the curvature of his spine. Meanwhile, Harper waits on a visit to her pediatrician before any diagnosis can be made about the Chiari.
Lauren said Marleigh’s neurosurgeon believes there is a chance the children will have a connective tissue disorder, but it will be uncertain unless they develop more severe issues over time.
Despite the Lindsays’ difficult journey in just a matter of months, Lauren said the family sees the bright side.
“We’ve all learned a lot — about ourselves, about our family, about love, and about life,” she said.