The Sunday Series (127), with Mark Brodinsky

When the unexpected becomes accepted the world shifts, hearts grow, perceptions change.

What can appear on the surface to be a difficult challenge to overcome, if viewed in a different light and from a place of faith, gratitude can be the outcome.

We learn from others who share their challenges and reveal their vulnerability. Sharing their struggle touches our humanity and in turn we become engaged in their story.

Everyone has a story.

I am Mark Brodinsky and this is The Sunday Series.

The Sunday Series (127): What Lola Wants

“It’s a girl!” It’s exactly what Nickell and Antwan Thomas wanted to hear. Just seven months removed from being blessed with their son Antwan Junior, the news that the couple would be bringing a daughter into the world was a magical moment.

The ultrasound results that day, 17 weeks into the pregnancy, (June 16th 2011), validated what the couple had been hoping to hear. The pending birth of a baby girl, made even more meaningful because Nickell would now get to name her daughter Taylor, in memory of her grandmother who had passed on just four months earlier. Upon learning the news Nickell had already started shopping collecting “It’s a Girl” balloons for her mom and was going to find a “Daddy’s Little Girl” t-shirt for her husband. She just needed to stop by her mom’s house first to pick up her son.

When she arrived her mom was ecstatic – crying, screaming, hugging – so thrilled for her daughter, son-in-law and grandson to soon welcome a new life, a little girl, into the world. Nickell was feeling just as blessed, but as the two celebrated Nickell noticed her cellphone ringing, the same restricted phone number kept calling again and again. By the third call, Nickell decided she had better pick up.

It was the doctor.

“He told me the fetus has severe brain and spinal damage”, says Nickell. “And you will need to make a decision, because you are at the borderline time for a mid-term abortion. He said the condition is called Spina bifida. And based on the results the fetus would have a poor quality of life. At that moment my daughter, a real being in my stomach, who just moments before had a name and everything – was now being referred to as just a fetus.”

Nickell continues, “I hung up the phone and then I did the worst thing – I went to the internet. All these images popped up of babies with Spina bifida, horrific images.” Scared of what might lie ahead, Nickell says she was terrified, confused and sad.

The unknown, the unexpected can seem scary and daunting, until your perception of that reality shifts. For Nickell, her life-changing moment, on this D-Day, as it’s called in the spina bifida community, was about to happen. First however, she needed to speak to her husband.

When Antwan came home Nickell, emotional and unsteady, told him the news. She says her husband stayed in control and asked her a single question, “is it going to make a difference, are we going to love her less?” Nickell said ‘no’ , so they both agreed to move forward and bring Taylor into the world.

But the decision was not void of great concern and worry. Nickell says she prayed to God, asking him what she had done to deserve this and she went back online to research. What Nickell found was a story, a blog, which changed everything. “There was this gorgeous little boy”, Nickell says. “He had baby blue eyes, spikey hair and the biggest smile on his face.” I read the blog his mother had posted about her experience raising her son with Spina bifida and my tears of pain turned to tears of joy. I never reached out to her, and I’m sure this woman has no clue emotionally what her blog meant to me. I’m the type of person I can deal with anything, if I understand it.”

With renewed faith, and a bit earlier then the due date, which Nickell says is typical of her daughter and her “feisty fashion”, the couple welcomed Taylor into the world. Nickell says she had a C-section, and so Taylor was whisked away into surgery and into the NICU. But she begged the doctors to get her out of bed so she could see her newborn daughter. “It was a Thank God moment for me”, says Nickell. “There were babies I saw lying in there weighing only a pound or two, Taylor was five pounds at birth. There are babies who don’t make it… my daughter is alive. Every time we have a challenge now I look at it as a blessing. Someone out there may have a child who has other challenges tougher then our own, or who may have lost a child.”

From a broken heart to a blessing, from fear to a place of faith and gratitude. Taylor has turned the Thomas family into a force for survival and sacrifice, because that is what you do for your children, especially when faced with a challenge. Taylor was born with one of her feet turned completely around, no feeling below her knees, both hips dislocated. All of these physical conditions which are being managed, or are being improved as much as possible through modern medicine. Taylor, now 4-years-old, has endured six surgeries to give her a better quality of life, the most recent a very invasive surgery to run a catheter through her stomach and provide her more independence. The one things the doctors haven’t had to touch is Taylor’s heart, which is full of life and an unending drive to be as independent as possible.

“Taylor is the inspiration behind so many things”, says Nickell. “The experience with Taylor has changed me as a person and a mother. You have to be an advocate when you have a special needs child. I don’t complain about things anymore.”

No one in the family is complaining. Taylor and her brother Antwan Jr are best of friends. Nickell says Antwan doesn’t see Taylor as different at all, being only 13-months-apart, the two are close. For Antwan, Taylor’s condition is just a normal part of life and he is always looking out for his sister. The two have nicknames for each other. Nickell says Taylor calls Antwan, Ryder, (a nickname their grandmother gave to Taylor), and he calls his sister, Lola. It’s a nickname the family came up with in reference to Taylor’s feisty and determined personality, it comes from the song Whatever Lola Wants… “whatever Lola wants, Lola gets.”

Nickell says despite her desire to be independent and to persevere through it all Taylor has her limitations and always will. Because of her bowel and bladder issues Taylor is on medications she will have to continue with the rest of her life. She can dress herself, but only up to a point. A typical morning starts with Lola on her bed, brushing her teeth since she can’t stand at the sink to do the same. She can put on her shirt alone, but her pants require assistance since she can’t stand to support herself. She is in a wheelchair at school, though she frequently gets out and crawls around to make forward progress and to get things she wants. Nickell says Taylor sleeps in a fashion which looks uncomfortable to those of us who can walk, but is comfortable to her, because her hips are dislocated she sleeps with her head in her lap or her hips above her head. Taylor is in therapy at Kennedy Kreiger in Baltimore every week and Nickell says she has frequent doctor appointments.

The need to care for Taylor has meant that the family had to make changes. The Thomas family eventually moved out of their town home and into an apartment, so Taylor would not have to use the stairs. It is not easy to find babysitters since care for Taylor is a priority. As Taylor gets older it is harder for the couple to carry her around when necessary. And the challenges of caring for her daughter led Nickell to work only part-time as a recruiter and start her own floral arrangement business: My Arrangements Inspired by Lola Rose, (http://www.lolarosearrangements.com/).

Her husband Antwan also recently retired from UPS, after 24 years with the company, which gives him more time to be hands-on with his daughter and her many appointments and constant care – and he too has started his own business in auto detailing, (http://www.mymddetailer.com/). Together Nickell and Antwan are trying to keep it all together and give attention to both their children the best way they can.

Following her latest surgery this past summer, which had her hospitalized for a total of five weeks, Nickell says Taylor is getting back on track. She wants to get into cheerleading and Nickell would like to get her involved in the Special Olympics. Taylor is also learning to speak Spanish at the learning-daycare her grandmother owns and Nickell says she is constantly on the move, as much as she can be.

“Taylor wants to be very, very independent”, says Nickell. “She races her classmates into the building in her wheelchair and she stands up for herself. She will try to get whatever toy she wants on her own, or climb up and try and figure it out. If she and her brother are arguing, I guarantee she started it. As we like to say – her legs don’t work, but her smart mouth does.”

It’s day by day for the Thomas family, but in this thing we call life, it’s all any of us can do. It’s about focus and faith.

“My kids are my world”, says Nickell. “I have moments where I am overwhelmed, but it’s very short-lived. I really try to make things so my kids are never impacted by it. I’m a simple person and I’ve learned a lot. I remember how I was praying when I found out about Taylor and said, ‘God why me?’ I had to learn to say, why not me? I had to learn everyone in life is going to go through some ups and downs and you must trust in your faith and what God has for you and his plan for you. This experience has taught me to be humble and taught me I’m not above being uncomfortable. I’m not above that struggle.”