Photo by Emily Rose Imagery

By Marji Wisniewski

REDESIGNING LIFE BY HEART WITH SHIRLEY WICKMAN

When Shirley and I spoke over Zoom, we had the typical, almost cliché video call interruptions: a UPS delivery, dogs barking, slow internet speeds, and kids walking in needing help with schoolwork. When Rexford popped into the webcam, I recognized the logo on his t-shirt right away. The shirt was from transplant camp at North Star Reach, a camp for children with serious health challenges. I had previously worked there, so I asked him about it. The first thing he said was, “It’s the best camp ever!” This made my heart happy. We then swapped stories of kissing fish at camp — if you know, you know. On the outside, Rexford looks and acts like any other 11-year-old. But unlike our cliché Zoom call, Rexford and his mom Shirley’s life has been anything but typical. 

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DANCING THROUGH PAIN

Like many other parents that have dealt with an illness, accident, or death of a child, my life has been divided into two halves: my life before my son Rexford’s event on March 21, 2018, and my life after. I believe that the hardships I endured as a child and young adult made me stronger so that I could be the mom that he needs. There are so many events and happenings along my life’s path that I believe helped me better care for him in his most serious times of need. 

I grew up in upstate New York in a difficult home environment. My father was sick my entire life. As a way to cope with what was going on at home, I started dancing. I found my passion in classical ballet and I poured my heart and soul into it. Ballet was my life, my therapy, my heart. 

When I was 17, my father died. After I graduated high school, I decided to move to New York City and pursue my passion of ballet. My friend and I got an apartment downtown off 30th street between 8th and 9th Ave. I received a full scholarship on Broadway and was auditioning for ballet companies as well as working to pay the rent. After about a year, the financial strain took its toll and I moved back home to regroup. I knew I wanted to keep dancing, but I had to find a different path to get there. 

I decided to enroll at Sage College in Albany, New York. I joined the Albany Ballet and was going to school, dancing, teaching dance, and waitressing. Unfortunately, one year into this full life I had created for myself, I was in a serious car accident. I suffered a severe back injury that ended my ballet career. 

DESIGNING A LIFE 

Devastated by the sudden loss of my ballet career, I turned my focus towards my major, interior design. My dad had been an engineer, and my mom was in real estate. From them I learned both the technical and creative side of design. I have many memories of working alongside my mom as a young girl, cleaning and staging homes to sell. I’m sure that’s one of the experiences that ignited my interest in interior design. 

After earning my associate’s degree from Sage College in New York, I decided to further my education and get my BFA in interior design from the Illinois Institute of Art in Chicago. Again, I found myself waiting tables, bartending, and going to school. At one of the bars where I worked, I met my husband, Jeff. After we graduated, we spent a few more years experiencing all that Chicago had to offer us. I was working at Saks, Inc. and loving all of the opportunities that were opening for me in my field. I was fortunate to work on a number of diverse and fulfilling projects. One actually led me to a job collaborating on a design with actress Jane Seymour and her Saks bedroom furniture collection. 

In 2004, Jeff accepted a job transfer that took us to Michigan. I remembered a fellow waitress saying what a cool town Ann Arbor was, so when we started planning our move, I mentioned that we should look there. We walked around Ann Arbor and found the town to be very metropolitan. It felt a bit like a little Lincoln Park. We decided it was a great spot to land.

I interviewed at numerous design firms in and around the area. But my style philosophy felt different than what was in the area at the time. I’m not into making everything match; my style is much more eclectic. I decided that there was no better time than the present to jump in with both feet and start my own interior design firm. I founded Cyrus Interiors, named after my cat. 

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What Is Cyrus? 

Cyrus Interiors specializes in upscale contemporary residential and commercial design projects. Cyrus Interiors is a member of the American Society of Interior Designers and the Michigan Design Center. The company has received numerous accolades by focusing on creating a transcendent and highly functional space for each personality. The intention of Shirley and Cyrus Interiors is to create long-lasting client relationships; Shirley looks forward to working with her valued clients again when she can do so safely post-pandemic. 

Life was good. In 2009, I had a new baby boy, a growing business, and a growing family. Three years later we welcomed our daughter Sophia. 

I remember when Rexford was just two weeks old, I got a call from a new client asking me to start work on redesigning her bathroom. I told her, “I just had a baby, your bathroom will need to wait a few weeks,” to which she replied, “Whatever you need, I’ll wait.” That client was Kathy Charpie, and she and her husband would become great friends over the course of the next ten years. They were also one of the first people I called when Rexford got sick. Her husband, Dr. John Charpie, is a pediatric cardiologist and co-director of the MCHC (U-M Congenital Heart Center) and played a critical role on Rexford’s medical team. 

THE DAY OUR LIVES WERE FOREVER CHANGED

When I tell the story of March 21, 2018, it’s like I’m transported right back there — watching myself over my body, over his body. The day started out unusual for me. I decided to stay home from work and rest, as I wasn’t feeling good. I rarely missed a day of work, but on this day, I just felt the need to stay home. 

I was laying in bed when I received an alarming call from Rexford’s school. They told me he had collapsed in the school gym and was not awake. They assumed he was having a seizure and had called an ambulance. That day, I turned what was usually a 10-minute drive to the elementary school into a four-minute one. When I arrived, I saw Rexford lying in my friend Sarah’s arms. She was holding him with his head resting on her chest. In the four minutes that it took to drive to the school, Sarah was saving his life.

Sarah, a registered nurse, had also been called to the school that day. Her son had an asthma attack, and she was in the office with him when she overheard the announcement on the PA system, “Student down in the gym.” She ran to the gym to see if she could help. When she arrived, she saw Rexford, unconscious and turning blue. She didn’t even hesitate. She did the only thing she felt was right in that moment and began performing CPR until she successfully resuscitated him. 

Rexford was placed on a stretcher and transported via ambulance to C.S. Mott Children’s Hospital. They ran a battery of tests on his heart and brain that were inconclusive. But kids don’t just collapse in the school gym for no reason. Rexford was a healthy child before this moment. The weekend before, he was playing basketball on the team my husband coached. The doctors continued to persist on his case. A fellow was the first to notice that although his EKG looked normal on the surface, there was a small inconsistency in the last data point. He ordered an echocardiogram, and our lives were forever changed. 

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What Is Restrictive Cardiomyopathy?

Restrictive cardiomyopathy is rare. It’s most often diagnosed in children, but can develop at any age. The walls of the main heart chambers become stiff and rigid and can’t relax properly after contracting. This means the heart can’t properly fill with blood. This results in reduced blood flow from the heart and can lead to symptoms of heart failure, such as breathlessness, fatigue, and ankle swelling, as well as heart rhythm problems. In many cases the cause is unknown, although sometimes the condition can be inherited.

WAITING FOR A NEW HEART

The test showed that Rexford had an extremely sick heart. He was diagnosed with the rarest form of cardiomyopathy: restrictive cardiomyopathy. This means his heart muscle is not only thick, but also stiff. Rexford was admitted, and over the course of his stay he underwent more testing, was prescribed a number of medications, and had an Implantable Cardioverter Defibrillator (ICD) implanted. 

One of the doctors that I’ve grown to love over this experience pulled me aside and said, “Let’s take a walk.” We walked around the eleventh floor of the hospital until she gently told me, “You need to wrap your brain around a heart transplant for Rexford.” I felt like I was in a bad dream; I couldn’t hear what she was saying to me. She kept looking into my eyes and nodded her head persistently until I too started nodding. We were told that without a transplant, Rexford had a life expectancy of two years. 

I walked back into his room and broke the news to Rexford. He started to cry and asked if he was going to die. How do you answer that question from your eight-year-old son? I held him tight and told him he was not going to die, but that his heart was very sick and we were going to get him a new one. I told him it would be scary, and it would suck, but that he wasn’t going to die.

We left the hospital three days later with Rexford listed as Stage 2 on the heart transplant list. However, over the summer months his health quickly declined. In August, he was given a stress test and couldn’t complete it. They moved him up to Level 1B on the heart transplant list and we began to prepare for the real possibility that a new heart could come soon. 

100 DAYS LATER

It was the day after Thanksgiving, 2018, when I received the call. I’ll never forget how calm and kind the nurse who made that call was. She said, “I think we have a heart for your son.” Within an hour and a half, we had packed up and arrived at Mott. There were many things that happened over the next few days that I wasn’t prepared for. It was a 21-hour wait from when we arrived until they took him back for surgery. During that time, so many things crossed my mind. I felt sad for the family that was saying goodbye to their child. I felt scared for what the surgery was going to be like for Rexford. I also felt anticipation for Rexford’s new life that he had been given. 

When they wheeled Rexford back to the operating room and the doors closed behind him, I fell to the floor. To this day, I’m not sure how long I laid there. I had held myself together for 21 hours and I finally collapsed from fear, exhaustion, stress, anxiety, and love for my boy. They gave me a bag of his clothes and I found a quiet corner in the waiting area, covered my head with a blanket, and just breathed in the scent of him with his clothes pressed hard to my face. 

No one prepares you for walking into a recovery room and seeing your child hooked up to every piece of equipment and tubing possible, all working in tandem to keep him alive. It’s something your brain almost can’t process. On night one, the plan was to let Rexford sleep; in the morning, he’d have to wake up and start his healing process. To wake him up, they removed much of his pain medication. But 16 hours passed and he still was not awake. His nurse told me it was my turn to try to wake him. I gently touched him and said, “Rexford, it’s time to wake up now.” He slowly opened his eyes, only to have them fill with tears. He was scared, in pain, and very confused by the tube he had down his throat. My motherly instincts were so strong; I wanted to pull that tube out myself. The nurse reassured me the tube could come out once we knew he was stable, and eventually it did. 

THE GIFT OF LIFE

It’s been three years since Rexford’s cardiac arrest in the school gym; today, thanks to his new heart, he’s living the life we had hoped for him. Although this is something to celebrate for us, I can’t forget what that means for another family who lost their child. I don’t know who the family is or if I’ll ever get the chance to thank them, and I’m not sure if a “thank you” would ever be enough when they donated their child’s heart to save yours. We pray for our donor and the family that gave Rexford the most selfless gift. You are forever a part of our family.

Rexford has started a new life with a new heart, albeit not without challenges to ensure that his body doesn’t reject his heart. With organ recipients, it’s always a choreographed dance to balance the antirejection medications. Immunosuppression drugs, steroids, and blood pressure drugs are a lot to get used to, but Rexford’s body is adjusting, and we pray his new heart gives him many years of love and happiness.

In going through this with Rexford, I have learned so much and I have found ways to connect with other “Heart Moms,” as we call ourselves. In sharing our stories, we become stronger. When helping other moms navigate through this difficult journey, I remind them that bumps in the road are normal, and it’s hard not to freak out about every test, but they need to remember that a lot of heart challenges are treatable. My Heart Moms and I are a tribe of strong women who are banding together to get our children through some of the toughest moments of their lives.

HEART FOR LIFE

Through learning about the challenges that donor heart recipients face, I started a nonprofit foundation called Heart for Life. Heart for Life focuses on post-transplant disease prevention and detection research; our mission is to advance that research so that when children receive a heart transplant, that transplant is not only a treatment, but a cure. While great strides have been made in preventing rejection in transplantation, there are still many complications associated with transplanted hearts. The primary concern is transplant coronary artery disease, which is one of the leading causes of failure in transplanted hearts. Our hope is to increase the longevity of a heart transplant with the goal of a heart for life. I believe that we’ll get there in the next 10 years, based on the progress I’ve seen in the short amount of time since Rexford’s transplant. If you’d like to support the mission of Heart for Life, you can visit our website at https://heartforlifeorg.wpcomstaging.com/.

LIFE IS NOT A STRAIGHT PATH

I can’t tell our story without mentioning the COVID-19 global pandemic that came just as our family was settling into our new lives. Although it added an extra layer of stress to Rexford’s health concerns, it also helped our bond as a family grow stronger. Over the last year, we’ve stayed safe inside our bubble at home. A few times over the summer, Rexford had to go in for scans, bloodwork, and treatment for his lungs. Every time we left our bubble, the fear was unimaginable. But my husband has received his first dose of the vaccine and I hope to receive mine in the near future. My next mission will be to get Rexford one as soon as it has proven safe for children his age. 

One memory from Rexford’s post-transplant recovery that has really stuck with me was when my dear friend Kim called me while Rexford was in the ICU. “I’m coming up there,” she said, “and we’re going to go for a walk.” My first thought was that I was a hot mess, and she shouldn’t come. She told me she didn’t mind. “It’s okay if I don’t see Rexford. I’m just going to come get you and take you outside to walk for a few minutes.” And that’s what she did. We walked and we cried together. I tell this small story because many times when we hear of someone going through something incredibly hard, we like to say, “Let me know if there’s anything I can do.” But what that person might need is someone to be like Kim, and just walk alongside them.

If I’ve learned one thing, it’s that life changes your path; it sure has changed mine over and over again. I know I was never planning on becoming a “Heart Mom” or figuring out how to protect my immunocompromised child during a pandemic. Whatever you thought was the perfect vision of your life will change. But just because it changes doesn’t mean it’s a failure, or that you haven’t succeeded. It just means that you weren’t meant to take that path anymore. So, walk proudly on the path you are on and be sure to have great friends to walk alongside you.