November is deemed “Coast Guard Family Month” to honor and celebrate all of our families, as well as to provide information on benefits and programs for our families. Follow our series here on All Hands!
Cherish the children marching to the beat of their own music. They play the most beautiful heart songs. – Fiona Goldsworthy
Story and photos by Petty Officer 2nd Class Lauren Laughlin
Over the past several years the American public has seen a steady increase of entertainment media featuring superheroes. Whether it is the umpteenth remake of Batman or Spiderman, the story of Ironman, or a new movie highlighting the obscure like the Green Arrow, they all cater to our basic desire to be inspired.
But what really inspires us are real heroes. Heroes who take life as it is and make it great.
Is it a bird? Plane? Superman? Superwoman? No! It’s Brittany Joseph, Coast Guardsman and single mom to a daughter with special needs.
So maybe she is not Superwoman, although those powers of seeing through walls could come in handy, she still has special senses and abilities far more developed than parents of children without special needs. And with the help of the Coast Guard, she rocks at being a parent.
It was during her second ultra sound that Coast Guard Petty Officer 1st Class Brittany Joseph found out she was having a girl. It was also the day she learned that her daughter had spina bifida, a neural tube defect that occurs in one out of every 1,000 newborns in the United States.
“My daughter, Adalena, has spina bifida and 22q deletion DiGeorge syndrome,” said Joseph.
“There are many different levels and severities of the disease, Adalena has the most severe and rarest form.”
Spina bifida occurs during pregnancy and for unexplained reasons, the embryo’s neural tube, which develops into the brain, spinal cord, and vertebral column, fails to form properly, which results in varying degrees of permanent damage to the spinal column and the nervous system.
In the United States, approximately 1,500 infants are born with spina bifida each year. According to the Spina Bifida Association, “Spina bifida is the most frequently occurring permanently disabling birth defect…More children have spina bifida than have muscular dystrophy, multiple sclerosis, and cystic fibrosis combined.”
“We knew that she was going to be delayed, not only from her special needs but from being a premature baby as well,” Joseph said.
“We were very lucky that Adalena was a candidate for in utero surgery, and that it was successful. While we weren’t sure if she was going to be able to walk, having the surgery increased the chances that she could. With therapy, braces, walkers, and time she is walking on her own and we have been brace-free for several months.”
At the time of Adalena’s birth, Joseph was stationed at the Personnel Service Center in Arlington, Va. Her mother quit her job in Ohio and moved to Virginia to be with them, even before the birth.
“My family has been supportive from the very beginning,” Joseph said.
“My mom and stepdad have sacrificed so much to help me. My mom was away from the rest of my family and her husband for 15 months, before I was able to be stationed in Cleveland, closer to my family.”
To find out where Joseph gets her superhero cape, look no further than her mother.
Not only did Michelle Baer quit her job to help out Joseph and Adalena, she has learned how to use Adalena’s medical equipment and became her secondary caregiver.
“After Adalena was born we immediately applied for the Coast Guard’s Special Needs Program, which helped us out a lot,” said Joseph.
The Coast Guard’s Special Needs Program provides a comprehensive, coordinated, multidisciplinary approach to community support, housing, medical, educational, and personnel services for Coast Guard families with special needs.
With help from the program, Joseph was able to get stationed in Cleveland, which is less than an hour away from her hometown and where her mother and stepfather live.
“Being home has not only made things easier for Adalena and I, but for my mom and stepdad too,” Joseph said.
While Baer watches Adalena throughout the day, Joseph is working her superhero magic at the Base Cleveland Servicing Personnel Office (SPO) in the Anthony J. Celebrezze Federal Building in downtown Cleveland.
“Anyone can have a child and call themselves a parent, but a real parent is one who puts their needs behind the needs of their child,” said Master Chief Petty Officer William Lindsay, the Base Cleveland Command Master Chief.
“Brittany not only does this with her daughter, but with the Coast Guardsmen below her and the anyone who comes to her for help.”
Before moving to the SPO in 2014, Joseph was at the Coast Guard 9th District Legal Office in the same building but one floor below the SPO. When she left the legal office, Petty Officer 3rd Class Grant Kelly took her place.
“She left large shoes for me to fill,” said Kelly. “I’m so lucky she is just one floor up from me now because I am always looking to her for answers. She always has time to answer any questions I have about legal issues or about the Coast Guard. I can say that I would not be as successful without her help.”
Although, her transfer from the legal office to the SPO was only one floor difference, it was a huge step for her as a mother as it allowed Joseph to stay in Cleveland longer.
“The move to the SPO was great for us,” Joseph said. “In the legal office I was the only enlisted person, here I am surrounded by other yeoman and we work as a team which allows me to focus a bit more on my daughter.”
Adalena has been non-verbal from the 22q deletion since birth but recently underwent surgery to repair her cleft palate and is working on talking. She knows more than 100 signs and can communicate effectively.
Adalena has a gastrostomy tube and in the beginning it was her only source of nutrition from being a premature baby. She has progressed to the point where the g-tube is now used only to help keep her hydrated and rarely uses it. Her doctors are hopeful that it can come out at the beginning of 2017.
“Don’t worry, she loves to eat,” Joseph said.
“Anything! Mostly cheese, which she’s not really supposed to have, but you try telling a cute, almost four-year-old that.”
Adalena had one surgery before being born and since has had four surgeries. At least twice a year, Joseph, Baer and Adalena take a weeklong trip where they visit all of Adalena’s specialist doctors at the Children’s Hospital in Pittsburg.
Keeping all of the doctors, medical appointments and travel plans organized would be hard for some, but one of Joseph’s superpowers is the ability to organize. Her organization skills don’t stay at home, Joseph brings her superpower to work with her where she is the payment approving official for more than 800 records across the Great Lakes and is also a supervisor to five yeomen in the SPO shop.
“Brittany is not just organized, she is perfectly in control,” said Sarah Simpson, a member of Base Cleveland who works with Joseph on several committees.
“She knows what works for her and what helps her keep up with her toddler and 800 Great Lakes Coast Guardsmen and their families.”
With Adalena’s lowered immune system, she is not allowed to go to school with other children. Because of this Joseph, has had to make adjustments to her home to make sure that Adalena receives an enriched education that allows for her to stay as healthy as possible.
“She is getting better and because of this I have let her have some freedoms,” said Joseph. “I have let her have control of her playroom and she likes to keep it a mess. She knows that mommy likes to have stuff put up and so she will look directly at me and dump her toys onto the floor.”
But not all people are as understanding of Joseph and Adalena as the Coast Guardsmen that have worked with her.
“We have come against obstacles out in public,” said Joseph.
“Adalena loves to walk, but she walks slowly and gets tired quickly. People will stare at us or whisper quietly to each other. We have even been asked why did we park in a handicapped parking space when she can walk.”
Even though they are enrolled in the Coast Guard’s Special Needs Program, Joseph says she doesn’t feel special.
“I am thankful for the programs the Coast Guard has that allow me to be a mother and to serve my country,” said Joseph.
“But to me, we are not special, she is just a kid and I am just a mom. She is stubborn and funny and is her own person with her own personality. We are a family, just with superpowers.”
Around 10% of Coast Guardsmen are enrolled in the Coast Guard’s Special Needs Program but many families who qualify have not enrolled or are unaware that they could enroll.
With so many other families like hers serving our nation, Joseph has this advice to give:
“One of the most important things I’ve learned is to be positive. No matter what situation you might be going through or about to go through, remember that you are not alone.”
“I am happy to share my story and hope that Adalena and I can be here for another family going through something like we have and not feel alone.”
My children taught me the true meaning of unconditional love. ― Yvonne Pierre
Click here to learn more about the Coast Guard’s Special Needs Program (SNP).
Information about the SNP may be obtained by contacting the Office of Health, Safety, and Work-Life (HSWL) Family Resource Specialist (FRS). This point of contact list details the Districts/Regional Practices, Areas Served, Family Resources Specialists, and Regional Managers. You may also access a full roster of Work-Life Staff sorted by field office.