The Annual “Strong Mommy Contest” 2018
Photography has been the greatest personal project for me, and a couple of years into my work as a full-time photographer I realized that images truly have power beyond simple portraiture. They can move us, make us feel things and convey ideas that transcend language. Photographs can be cute, sweet, and pretty- but they can also be strong, raw and real. Photography literally means “painting with light” and comes from the Greek “photos” light and “graphe” drawing. I decided early on to use my work in photography to shed light on those who are living their lives in extraordinary ways, and that is where the “Strong Mommy Contest” was born.
Each year in April my followers nominate a woman that they have seen day after day, year after year, take the difficult hand that she has been dealt and move forward with grace and courage and strength. I am always completely in awe of the women who are nominated and I consider myself to lucky to have the opportunity to work with them and to tell their incredible stories. I always leave my sessions with these families with a renewed sense of perspective on what is truly important in life and what isn’t. This project was no exception.
My amazing community of social media followers this year gave moving testimonies about strong women in our area, and one name kept coming up: Nicole Propper and her daughter Colby. Nicole became the winner with the most nominations and as I learned more about her story it wasn’t hard to see why.
Community Support- A Salon with a Talented Staff and a Big Heart
This year I was extra blessed not only to have such an amazing mother to work with, but to have the support of a local salon who read the nominations for Nicole and felt moved to be part of the telling of this story! Meagan La Pan, the owner of Meagan Joan Salon in Palm Bay, Florida and her staff reached out and volunteered their time and resources to provide full hair and make up for the shoot so that Nicole could have the pampering that she deserves but rarely has time for. I was so touched and excited that this amazing staff jumped on board to make this experience even more special. You can find out more about Meagan and her amazing team at Meagan Joan Salon on Facebook!
The Story Begins
Nicole and her husband, Troy, realized after having their first child that something wasn’t quite right. They wanted to grow their family one baby bigger, but they soon discovered that they were dealing with secondary infertility, a condition that makes it difficult to conceive after a previous normal pregnancy. After years of trying to conceive a second child their dreams came true. They found out that not only were they expecting another family member- but that their family would be growing by two! Excited, they planned for their twins and enjoyed a healthy, happy first 20 weeks of pregnancy. At that point Nicole and Troy found out that the twins were growing at the rate of single babies, which made it difficult for Nicole as they grew- a problem exacerbated by her small stature and the large size of the babies. Simply put- they were running out of room in there! The couple knew at this point that both were girls, and would watch during ultrasounds as the sisters would move and kick one another in utero. The doctors placed Nicole on bedrest and they continued to monitor the healthy twins.
Things became to change suddenly on the morning after Father’s Day, 2005. Nicole awoke to spotting and knew that she needed to be seen in the hospital. She needed to see that the twins were okay. She sat and waited all day in her hospital room with no contractions, and at 5:30pm she saw the doctor and was checked. She told the doctor to please let her go home and promised to “Hang by her toes” and take it easy until the babies were born. Nicole says that the doctor’s eyes told the story. She could see in the way that she looked back at her that something wasn’t right. Something was very wrong. The doctor explained to Nicole and Troy that Nicole was already dilated to 8cm, without any contractions, and that upon exam she could feel baby Austin’s amniotic sac bulging out. The babies were in a lot of danger.
Nicole remembers feeling absolute shock. She was only 24 weeks and 2 days into her pregnancy and, as a nurse, she knew what that meant to the development of the twins. She begged them to put her into the trendelenburg position in bed, with her feet higher than her head, and to give her steroids to help develop the lungs of both babies. The doctor advised her that they were too far along for that. Soon a perinatologist came into the room to speak with Nicole and Troy. The doctor advised them that the twins now had only a 30% chance of survival. In the blur of motion and preparations Nicole sat, as her epidural was placed by the anesthesiologist, and thoughts raced through her mind. She thought that her body had failed her. That it had failed her babies. She thought of their daughter Shaina and worried that she wouldn’t get the twin sisters that she had been anxiously waiting for and dreaming of. Shaina had named them and picked out the theme of their nursery. Nicole remembers feeling angry, and sad, and thinking that no child should have to go through something like this. As the team whirled around her prepping her for an emergency c-section she recalls wondering whether or not they would even get to use the cribs they had ready for the girls.
More than anything, Nicole was scared. She remembers feeling alone, as no one was allowed to accompany her into the delivery room during the c-section. A kind friend and nurse stayed on shift and sat by her head during the ceserian section, and Nicole remembers crying from start to finish.
The team moved quickly. Austyn was brought into to world first, though Nicole didn’t get to see her. A team was ready and waiting and rushed out of the delivery room with her to begin working on her tiny body. Colby seemed to have a different plan and sucked further up and didn’t seem to want to some out. Nicole recalls thinking that it was almost as though she knew she needed more time. That she wasn’t ready and that this wasn’t right. She was delivered with her sac intact, which is a state called en caul. This was done to protect her fragile skin. Colby, incredibly, even tried to cry at birth.
Nicole was taken back to her room and began the agonizing process of waiting. The transport team from Arnold Palmer was stabilizing the babies. Nicole wondered why God would make her work so hard, bless her with two beautiful babies, only to take them from her. It seemed to wrong. It wasn’t fair. She couldn’t comprehend it.
At one point someone came in and upgraded their survival chances from 30% to 50%. Nicole remembers thinking that 50% is better than 30%. Even in the very first critical moments, and after going through so much physically and emotionally, Nicole was searching for positives. Though she didn’t know it then, this instinct would stay with her for year and years to come.
Meeting Austyn and Colby
Finally, the Arnold Palmer Hospital team entered with two isolettes. Nicole and Troy were allowed to quickly see their babies for the first time. They looked in awe at two babies who were so tiny but so perfect. Austyn weighted 1 lb 7oz and was 11.5 inches long. Colby weighed 1 lb 9 oz and was 12 inches long. They looked nothing like one another. Colby looked like the carbon copy of her older sister Shaina- pale and bald. Austyn had dark hair and dark eyebrows. As she looked on Nicole remembers thinking my babies are in zip-lock bags (a process done to keep heat in). As they were wheeled out Nicole cried so hard. She wondered if she would ever see them again.
The upcoming days were frustrating. The t-incision made to the uterus to remove Colby meant that Nicole was at risk for a bleed and was kept for monitoring. Meanwhile, Troy went to Arnold Palmer Hospital to be with the twins in the NICU. Nicole spoke often with doctors and her husband but remembers thinking that Troy was keeping things about the twin’s condition from her to protect her. She knew that Austyn was struggling more than Colby was.
As soon as she was discharged she went to APH in Orlando to be with her babies. Colby was sensitive and her heart rate would drop if her isolette cover were even opened. Nicole felt guilty as she saw her babies covered in tubes and wires. Austyn was smaller and appeared to be younger in gestation than Colby. Her skin was ruddy and red compared to her sister’s. As she looked at her head of dark hair she remembers thinking that she won on this girl. She finally had a baby with a full head of hair. She told Troy that she thought that Austyn would have brown eyes. At 9pm they finally left the NICU and only then did Nicole even realize how much pain she was still in. There were no beds left at the Ronald McDonald House that night, so they went home. After only one hour there the phone rang. It was a nurse from the NICU. Austyn was struggling and they didn’t think that she wouldn’t make it through the night. The NICU nurse asked them to return immediately. They jumped back into the car and drove in the night to be there with their tiniest twin.
Nicole and Troy’s world turned upside down in that moment. They prayed that the nurses and doctors were wrong as they rushed back. The doctor put up the x ray for Nicole and Troy to see, and being medical she knew right away that it was a terrible situation. Austyn had suffered a brain bleed and then a pulmonary hemorrhage. As she stared at the x ray she just cried. She knew what she was looking at. She asked to hold her baby. She needed to hold her. She was led to a large private room where she was able to hold Austyn- the most beautiful and tiny little girl. She rocked her and sang to her. Austyn began to have seizures and was doing poorly on the ventilator. They made the heart breaking decision in those moments to remove Austyn from the vent, to hold her skin-to-skin, and to say goodbye. Hours and lots of red tape later they did just that. They bathed her tiny body and took her to see her twin one last time. Instinctively, Colby reached out her hand. It was as though she knew that her twin was gone. She looked at the doctor and told him, “Do not let me lose another child.”
Colby
Nicole and Troy soon moved into a room to live at the Ronald McDonald House, where they would stay for the next 6 months. Nicole remembers of those early days, “I woke up every morning about 6am. I would pump breast milk (9 bottles- I could have fed the entire NICU), eat a quick breakfast, grab my book and water bottle and head to Colby. I arrived about 7:30am each day. I would stare at her if she tolerated it, if not I would read. Once she tolerated her cover off the isolette, I would open one of the doors and sing to her. Once I could hold her I would hold her skin to skin as long as she tolerated it. I only left to use the bathroom or eat. They would put up a screen around so I could pump right there. I would stay with her until about 10-11 PM. I would go back to the RMH, shower pump again and go to bed.”
This time was a nightmare of medical complications and a roller coaster of emotion. Colby developed a brain bleed resulting in hydrocephalus. She had to have a PDA ligation. She required a VP shunt for the hydrocephalus that became infected and had to be removed and replaced at a later time. She develop retinopathy of prematurity and her retinas funneled and detached. They sent her to Miami to try and save her vision when she was 4 months old. At this time Colby was ready to go home, but they needed to try to save her vision.
The family went to Jackson Memorial and Miami for the eye surgery she needed and when they left that hospital Colby was on a vent and she was unrecognizable. She had developed superior vena cava syndrome, which means that main veins were blocked. Nicole had to fight to take her back to Arnold Palmer Hospital. She remembers that Colby’s little head was swollen as wide than her shoulders and was weeping fluid. Once able to return to Arnold Palmer Hospital Colby required a cardiac cathaterization to place stents in her tiny heart. Again they didn't know if she would make it. Again, Nicole and Troy prayed and held their breath. It took over a month for the swelling in her head to go down. Once the swelling went down, she was unable to coordinate her vomiting and require a g tube for feedings. She then had to get a new shunt. Finally, after the most incredible battle, Colby was discharged on Dec 21st, 2006. Nicole remembers the staff commenting that they were so relieved that Colby was going home with a nurse, which shook Nicole. She was scared to fail her and wondered if she could provide the care that Colby needed and keep her safe.
Thirteen Years Later
Through hard work, surgeries, hospital stays, illnesses, ups and downs, Nicole and Troy DID keep Colby safe and provide the care that she needed to thrive. The nurses and doctors who worked with Colby in her fragile first months could never have imagined the strong and happy TEENAGER that she would become. That’s right. Colby is now thirteen. Meeting her was such a privilege and watching her family interact with her and care for her during our session was moving. I arrived to the beach to meet with Nicole and she led me to their van, which is specially equipped with a bed for Colby- large enough for a teenager to lay down as they drive. Colby was already in her wheelchair and ready to go to the beach. As we walked together she grew more excited and Nicole told her “Colby, at the beach” to which she smiled and repeated “at the beach.” This girl knew the noises, the feel of the breeze and the sand and knew she was in one of her happy places that afternoon as we posed and shot and took moments to let her lay on the sand and touch it. Colby has special tactile objects that she is drawn to, one of those being a small crinkly bag of cat treats and the other an empty Playdoh cup. She held these and touched them as we worked. It was cute to see how something so simple brought her joy and comfort.
Nicole shared with me that her hopes for Colby are that she is happy and healthy- the most important things in life. In fact, life with Colby and the experiences that this family has had with their daughter have taught all of them to slow down, enjoy today, and appreciate small accomplishments. They look for the silver lining now, much like Nicole did in those early hours after the twin’s delivery. They say that Colby teaches them to take the hard days one at a time and that life is more about the memories that they make together, not about the material things that they have.
Life with Colby Today
Colby requires total, around-the-clock care. She has Cerebral Palsy, Epilepsy, is blind, has a g tube for feeding, has developmental delays and is wheelchair bound. She requires assistance with moving, eating, bathing, bowel regimen, and other activities of daily living. Nicole, Troy and Shaina rely on one another and work as a team to care for Colby. They trust one another and cope with things as a family unit. Troy is a stay-at-home dad and cares for Colby. He sometimes gets nervous, especially when Colby requires special care, but Nicole trains him and he does a great job caring for her one-on-one. You can see the special connection that they have as he carries her down the beach. Nicole works full-time as a nurse, but when she is off she says that it is all about mommy and Colby time. Colby loves it when Nicole sings to her or narrates movies for her. Shaina is still at home, for which Nicole is so thankful, and she is the third part to the care team. Having Shaina allows Nicole and Troy to sneak out to dinner every now and then. If Colby is sick and in the hospital Nicole takes time off and cares for her. This is their normal. They all love Colby and love that she is her own little person and a total fighter.
Advocating for Colby
Unfortunately, Colby falls through the cracks when it comes to assistance. She doesn’t qualify for programs or assistance because everything is income based and Nicole makes too much money. Let that sink in. A single income nurse makes too much. Nicole says that no one would believe that struggles that they have had as therapists say that Colby needs special interventions and they are denied the assistance to make them a reality for her. Nicole feels especially frustrated because, as a nurse, she is unable to get what her daughter needs sometimes despite her knowledge. However, being in the medical field helps her in dealing with other nurses and doctors as she advocates for Colby. She is able to speak up for her needs and to coordinate her care better, even catching med errors and potentially saving her life several times while Colby has been hospitalized. She wants people to know Colby as an individual, rather than just to put her into a box or give her a label.
Resources for Families Caring for Loved Ones with Cerebral Palsy
There are things that you learn the hard way and wish you had known sooner, and Nicole wants to share some of those resources with families who may not know about them. One is The Family Cafe annual disability convention, which is free for the disabled and their families. It provides a wealth of information and networking and takes place every June in Orlando. The Propper family commented that this isn’t just a great resource but that the convention is fun and they look forward to it each year. Nicole also recommends Morgan's Place in Melbourne- which is a sensory play place for children with disabilities. She speak very highly of Ability Plus Therapy in Melbourne for helping Colby to reach new goals and notes that they also have a private school for physically disabled children. She also recommends that parents find out about the med waiver waiting list.
To learn more please follow these links to the resources listed above:
A Message From Nicole
Nicole wants those caring for loved ones with disabilities that they are not alone. She says that it is important to take life one day at a time and to forgive yourself for not being perfect. She stresses the importance of trusting that you know your child and what is best for them. She says, “Never take no for an answer, just keep searching and asking questions.” She reminds parents that the easiest and most important thing to do is to just LOVE them.
I want to thank the Propper family for allowing me to follow you, capture you, and share these images and your journey with our community. Your story is inspirational and has touched many people. I applaud you for your hard work and dedication to your child, your unwavering strength, for putting your family first and for advocating for such a special girl.
