Think you’re Mighty? Think again. Our Smarty Mom is the mother of the mighty Shaw! A two-year-old miracle and NICU survivor. Candace is passionate and joyful. You talk to her and just linger on her positive words. Candace makes being a hero look so easy. Her story is amazing. Her personality is outrageous!
Charlotte, meet Candace! Our Smarty Mom of the week and beautiful mommy to a little boy that almost didn’t make it in this wild word. I’m so honored to share this amazing family!
Mom to: Nash (3.5) and Shaw (2)
Married to: Michael
Years lived in Charlotte: Born in Charlotte. Moved to France, San Francisco, then DC, then moved back to Charlotte six years ago, where I met my husband and real life began.
Your son Shaw was born at 27 weeks and considered a “micro-preemie”. What does that mean and how did you come to understand the challenges you were about to face as a family?
Our first son, Nash, arrived a week late, weighing 10lbs! My husband and I joked during my second pregnancy about how we ‘make big babies’. The joke was on us when I was loaded on a gurney and rushed to the hospital in labor with Shaw. He arrived 13 weeks early, weighing just two pounds. We were reluctantly thrown into the wild ride of surviving the NICU, balancing having a 15-month-old at home and praying our son would defy the odds and make it!
Micro preemies are babies weighing less than 2lbs or born at or before 26 weeks. The earlier a baby is born, the more severe his health problems are likely to be throughout life. Micro-preemies unfortunately account for most of premature infant deaths and are at risk for many long-term health issues and disabilities: cerebral palsy, respiratory issues, vision/hearing loss, developmental delays and learning disabilities to name a few.
What were the challenges your family faced with Shaw’s early delivery?
Life as we knew it was over. First, no mother should ever have to leave the hospital without her baby. For the next 122 days, we pretended to be normal with our 15-month-old at home, by taking turns being home, while he was awake. We lived at the hospital. Each day brought a new ride, which meant new team of specialists, medicines, machines, and research to solve the challenge. There were many days, we did not think Shaw was going to survive – those were the darkest days.
Shaw survived a stroke at birth, leaving brain damage on one side of his brain. We were told he may not walk or talk. Shaw survived 22 spinal taps (think epidural ladies – one every day, in the same spot with sugar water as the numbing agent). He has a permanent bruise on his back, as a result.
Shaw was very, very sick in the NICU. From meningitis to MRSA, Chronic Lung Disease to a narrow airway disorder… his fight continued. He had the first of a series of brain surgeries at weighing only 4lbs, resulting in a permanent device in his head that drains excess fluid from his brain to his abdomen. He also had numerous surgeries on his airway, as it still closes without warming.
Shaw continued to overcome adversity and finally came home with us after 122 days in the NICU. The greatest moment was introducing Shaw to his big (and very patient) brother, Nash.
When was the first time you saw your son Shaw after he was born?
I don’t remember a cry. I don’t remember much of anything actually, besides terror – not knowing if our little one made it or not. I was very ill from the delivery and spent the day in recovery, with my husband by my side.
However, I cannot forget being wheeled on a gurney, staring blankly at the ceiling of this foreign place called the NICU, as I was introduced our tiniest warrior. As they pulled me up to our son, I stared at him – in awe – through a plexiglass box. He was on life support, alarms were sounding and he was covered in wires. There were nurses and doctors trying to talk calmly to me, but I couldn’t hear them. All I could think of was how this frail little thing didn’t resemble a baby at all. He was covered in hair (which I later learned was the lanugo that keeps the baby warm until much later in gestation). He was bright red – the red of a tomato (also common in preterm births). I asked the nurses if I could touch him and I was told that even the slightest touch was too much for babies in this state to endure. As I tried to process that I couldn’t even touch my baby, I began to cry. Crying for the trauma he had just endured. Crying in fear for his life and future. And crying for not being able to do what a Mother is created to do, protect their child.
What do the words “Bee Mighty” mean to you?
Sigh. Reading the words Bee Mighty immediately brings a gigantic smile to my face.
Mighty by definition means: showing superior power or strength. Exceptional. Invincible. Unlimited.
Life in the NICU changed by the hour and I started a caringbridge to update family and friends on our progress, called Mighty Shaw. It only seemed fitting for our little fighter.
As we began to advocate for other micro-preemies like Shaw in our community, ‘Being Mighty’ is what these little guys need to survive. Bee Mighty was a constant theme, then the perfect anchor for our foundation.
How did you get the inspiration to start your own Foundation?
It wasn’t until we were home that we realized Shaw’s fight was just beginning. Between juggling the appointments, managing Shaw’s equipment (a monitor that he wore for a year that alerted us every time he stopped breathing, which was often!), we then faced insurance and what our future looked like with a special needs child.
We were unaware of the financial demands that were in our immediate future to ensure Shaw had the best quality of life. Therapy and equipment during the first years of a micro-preemie’s life are critical. It can mean the difference of if your child will walk or talk! Even the best private insurance limits the number of therapies a child can receive. Personally, we will spend thousands of dollars out-of-pocket each year for critical care for our son.
We created Bee Mighty to support families just like ours – and just like yours!
What was your most difficult stage in Shaw’s amazing recovery?
The stages change. There are challenges and rewards. It is now our norm: not sleeping (for two years), setting multiple alarms every night to ‘nurse’ my baby that was living miles away only to ensure my breast milk production did not deplete, waiting during the surgeries, grieving life as what you thought it might be, watching seasons pass on our way to/from the hospital, staying in isolation for two years because of Shaw’s chronic lung disease, wondering what Nash will take from this, watching a dr. ‘bag’ your baby – ultimately the only thing keeping him alive – as we walked from a normal procedure to the ICU because Shaw couldn’t handle it, knowing next month Shaw will have another surgery where they put chemo on cells in his airway…. Here is an excerpt from our CaringBridge on one of the darker days:
Caring Bridge Entry Written May 2, 2011 10:55pm
Believe it or not, after 98 days in the NICU, we ended up having our worst day today.
Shaw is uncomfortable. They took him off the ventilator today and his throat decided to swell. (Post extubation Laryngeal edema). He’s in pain and is having trouble breathing. For the pain, they’re giving him morphine, but the narcotic suppresses his respiratory efforts. So the doctors, nurses and nurse practitioners have spent the majority of the day trying to find the right balance between breathing support and pain management. If they give him too much medication he won’t breathe and if he’s in too much pain, he won’t breathe. So, needless to say, it’s been a tough day. The worst thing in the world is to see your child in pain.
In the midst of our son’s suffering, I actually witnessed something astonishing that I will carry with me the rest of my days.
Imagine four nurses, a nurse practitioner and a neonatologist hovering over your child, collaboratively trying to decide the best course of action. (Shaw literally had 40+ bradys today, and at more than one point, he turned multiple shades of blue and purple, where they used a bag to squeeze oxygen into his frail body).
After four hours of constant modification, one of the nurses suggested, “Give Shaw to his mother! See if it calms him. It can’t hurt!” They all worked diligently adjusting the tubes and wires to allow Candace to hold him with hopes he would soothe.
For some time, his vitals stabilized, while she sang (and cried) quietly in his ear. (A miracle to witness).
Tonight, above all of all, I learned that a mother’s touch can be the best medication of all.
Lord, heal our son.
After 90+ days in the hospital, my wife, the amazing mother of our children deserves a break. (Especially on Mother’s Day).
What does the Bee Mighty foundation do for families in need of assistance with preemie and NICU babies?
Bee Mighty provides therapy (traditional and alternative) and equipment (cranial bands, wheelchairs, etc) for the little ones. Any babe with a significant NICU stay is likely to require additional support and the earlier the care is administered the greater the results for the child. Families have to ration how much care their children receive due to financial restrictions from private insurance. These are families just like us! Our mission is to provide financial assistance to the parents of Neonatal Intensive Care Unit graduates battling significant medical challenges with limited financial resources, enhancing the child’s development and quality of life. Bee Mighty is a non-profit, 501(c)3 managed by Novant Health Foundation (formerly Presbyterian Healthcare Foundation).
100% of our funds go towards the development of a child – that’s what brings the smile to my face. We are literally making a difference.
How do you balance being a mom and fighting for this amazing cause?
I’ll have to find balance tomorrow. Today, I have passion for my two boys (three including my husband) that light up my life every day. At the same time, I’m now advocating for so many other babies. Just this January, Bee Mighty funded its first two babies! The first Mighty Bee was a four-year-old that is non-verbal and has a tracheotomy. In addition to the therapies paid for by their private insurance, this family pays out of pocket for their child to receive Music Therapy. Music therapy is known to strengthen communication in special children and in this particular case, the only known sounds this child has made is ‘humming’ through his traech during music class. When this family had to stop music therapy because the father lost his job, Bee Mighty funded music therapy for a year for this child!
When do you sleep!?
Sleep? (Workouts and zzzz’s are hard to come by these days. Shaw still doesn’t sleep through the night at 2yrs old and when our boys do sleep, Bee Mighty comes to life).
What do you feel is your biggest accomplishment as a mom?
Being an advocate for our boys. I don’t think I had the confidence before our experience with Shaw. Having a voice for your children – not just about who he should play with or what he should eat, but really questioning the experts because it is your son!
What is the most important lesson you have learned since becoming a mommy?
Don’t take yourself too seriously!
I read EVERY book about how to get a baby to sleep, potty train, make baby food, green your home, etc… I had everything calculated to such perfection. With Shaw’s early arrival, nothing was as I had planned. Survival took on a new state and it taught me to do the best that I can and be okay with that. Our situation is so different that I no longer ‘compare’ or try to keep up. We just go about our lives celebrating every second we can and relish the days that we have because we almost didn’t have them.
What is the most wonderful thing about your son Shaw today?
HE IS ALIVE! In addition, I’m pretty darn impressed that he carries the biggest smile you’ve seen with a bulb and magnet in his little head. I’m really grateful that he is walking and talking and continuing to refute any limitations his Neurosurgeons place on him. He inspires us – and many others – during this journey. And finally, I’m blown away by the sensitivity and compassion of his older brother, Nash.
What advice do you have for families currently facing a medical challenge?
During one of the days Michael and I were really struggling, we invited our pastor to our home to pray with us, help navigate our fear and address our anger. He gave me the best piece of advice, “Sometimes, taking things day-by-day is even too great in crisis. Instead, concentrate on taking things hour by hour.” At the time it did not seem profound; however, once I began to focus on the most immediate needs of our little miracle, I seemed to start ‘ticking’ things of that list of survival and not get overwhelmed with the ‘what ifs’.
SUV or mini-van?
Where do you see yourself in ten years?
Living in Paris, vacationing in Madagascar and/or Laos, writing children books and managing Bee Mighty via FaceTime from around the world (A girl can dream). All I know is I plan to continue to watch our boys continue to make life extraordinary! What could be richer?
Favorite thing about living in Charlotte?
The Beef and Bottle, Birdsong Jalapeño, our church and the overwhelming support of our friends and community.
Could not live without my . . .
Hand sanitizer (Did you know your cell phone is 3x as dirty as a public potty seat?) Oh – the repercussions of spending too much time in the NICU).
How is Shaw doing today?
Shaw is a walking, talking two-pound miracle. He continues to overcome every odd and amaze his family, doctors, therapists and specialist. He is the tiniest of warriors and we are so blessed and humbled to see where he takes us.
For more information on Bee Mighty and the amazing Richter family please visit:
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