Grand Edits with Gwen Sternhagen: Revising Life with an SMA-diagnosed Child

All of life is a draft. We look ahead with expectations and hopes of what the future will bring, but often, despite our choices, despite our resolve, events or circumstances beyond our control force us to rethink our plans. We edit our pages, making grand revisions, accepting the twists and turns of our story, doing all we can with what we are given, determined to create a narrative that is beautiful, albeit messy — our own shabby, yet shimmering story.

Last week, I wrote about being brave. No braver a woman, wife, and mother have I known than my friend Gwen Sternhagen. Welcome to Grand Edits, a guest-post series about revising, adapting, and overcoming. I’m glad you are here.

~Stacy


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The Sternhagen Family (left to right): Blake, Gwen, Scott, Tyler

In March of 2013, Gwen Sternhagen delivered her second son, Blake Grant Sternhagen. As she held her newborn baby to her chest in the first hours of his life, Gwen and her husband, Scott, were dreaming about the future. They imagined their sons playing sports together, running and climbing in the backyard, walking the woods at camp and becoming forever hunting partners. What fun it would be raising two  healthy, happy, busy boys. Surely Tyler and Blake, only 21 months apart in age, would be the best of friends.

Gwen smiled as she thought about all the topics she needed to study: sports knowledge (Hello, ESPN and Sunday football!), operating ATVs (How does one shift a four-wheeler again?),  hunting basics (or at least learning to accept closets full of camouflage attire), correct names of construction vehicles (“No, Mama, that’s a loader not  a bulldozer.”), and how to maintain enough energy to chase after two  boys (coffee, coffee, and a little more coffee. . .)

She rejoiced at the same-gender sibling perk of hand-me-downs. Buying Tyler “nicer” clothes seemed worth  it now, knowing that Blake would soon be wearing it all too!

Oh, and the family vacations and adventures would be many. Gwen imagined trips to Disneyland, the boys meeting their favorite characters and sitting side by side on kiddie rides galore. And speaking of rides, there would be bike rides, boat rides, and maybe even a jet ski one day for the boys to ride around the Hamilton Lakes chain where Gwen’s parents reside. Gwen and Scott’s heartfelt hopes for their family were coming true.

On January 8, 2014, two months before Blake’s first birthday, those hopes and expectations for what life would look like for the Sternhagens were dramatically altered. After some concerns about Blake not meeting developmental milestones, he was referred to a neurology specialist. Gwen and Scott waited anxiously for tests and screenings to help them determine what measures were necessary to help Blake meet regular physical milestones like unsupported sitting. Gwen, an intelligent, organized mom and school teacher, was ready to spring into action and help Blake close the gaps between him and other infants his age.

At Blake’s appointment that day, instead of receiving tools and hope, Gwen and Scott received the news that their son may not live to his second birthday. Blake is one of the 1 in 10,000 children afflicted with Spinal Muscular Atrophy, a genetic disorder that is caused by a mutation in the survival motor neuron gene 1 (SMN1). In a healthy person, this gene produces a protein that is critical to the function of the nerves that control muscles. Without the gene, nerve cells cannot properly function and eventually die, leading to debilitating and often fatal muscle weakness (curesma.org).

The neurologist explained to the Sternhagens that instead of focusing on helping Blake get better, they needed to shift their attention to Blake’s quality of life and to keeping him as happy as possible as the syndrome waged its toll on his small body.

Gwen and Scott locked eyes in the exam room, struck with disbelief and horror at what they had heard. Gwen cradled Blake in her arms, shaking her head, praying that the diagnosis was a mistake.

How could their handsome, smiling boy not have the full life every child deserves?

How could SMA, a condition most people have never even heard of,  rob the hopes of a vibrant future for their son?

The Sternhagens lived in a blur for weeks after Blake was diagnosed with SMA. Gwen could not bear to log into Facebook and see photos of healthy, thriving babies and children, knowing that Blake would not be with her much longer. The music station she typically loved listening to was now an emotional assault on her heart. The days were so painful– every hour promised another debilitating reminder of loss.  How can a parent muster the strength to live, to face the external world, knowing that their child has been issued a death sentence?

For Gwen and Scott, that strength to survive came from the outside —  from faith, love, family, and friends.

In her darkest moments, Gwen looks to God for strength, courage, and hope. She feels as though God has drawn her closer than ever before, believes He has a plan and has been preparing them for this difficult journey for years. In 2012, when Gwen was pregnant with Blake, she began feeling an urge to relocate from Wisconsin back to her hometown in the Upper Peninsula of Michigan. When she was twenty weeks pregnant with Blake, Gwen’s younger brother, Grant, passed away unexpectedly. The already-close family drew together for strength and comfort, thankful for the blessing of loved ones when life seemed so cruel. Five months later, Blake Grant was born, and the family rejoiced once again. When Blake was three months old, Gwen’s desire to move back to Michigan intensified. She and Scott began job hunting and both secured positions that would allow them to move back “home.” Six months after relocating, Blake was diagnosed with SMA. Amid these grueling months, it became perfectly clear to the Sternhagens why God had given Gwen the urge to move back to the close-knit community where she was raised. He knew they would need the love and support of family and dear friends to help them trudge through the darkest of valleys.

Shortly after Blake’s diagnosis, though Gwen and Scott were heavily burdened with grief and confusion, they had no choice but to take action. They had to learn all they could about Spinal Muscular Atrophy, how it would affect their son, what measures they could take to keep Blake healthy and strong for as long as possible. Gwen and Scott’s  experience at the Children’s Hospital of Wisconsin in Madison (March 2014) was a major turning point. An overnight stay allowed them to fully learn and understand the special care it would take to keep Blake healthy. They were trained in SMA breathing protocol, facilitated twice daily when Blake is healthy and at least every four hours when afflicted with a respiratory ailment. Two separate machines are used. The first replicates a cough and helps move secretions out of his lungs. Then a suction machine removes any visible secretions from the mouth and throat. Next, ten minutes of Chest Percussion Therapy loosens mucus, followed by fifteen minutes of postural draining to keep any secretions from entering the lungs. After the fifteen minutes, the cough machine and suction machine procedure is repeated. The forty-minute treatment helps clear Blake’s lungs and decreases the chance of an infection that could land him in the hospital.

After their first training appointment, Gwen and Scott left Madison with a better understanding of SMA protocol treatment, but also with fear and anxiety about executing the regimen at home. When Blake’s new medical equipment arrived, they loosely remembered the process from the appointment and began implementing treatments. Three weeks later, Blake became ill and was admitted to the Pediatric Intensive Care Unit. While in the hospital, Gwen and Scott observed the proper execution of SMA breathing protocol and realized they had been doing it incorrectly. The experience served as an important reminder of how much Blake needed the treatment, and how fortunate they were to have the proper equipment at home to keep Blake’s lungs clear so that he can be comfortable and healthy.

Over the next six months, Gwen and Scott became increasingly more knowledgeable about Blake’s condition and confident about his treatment needs. Although Gwen acknowledges the complexity of Blake’s condition and the winding road that lies ahead, she is learning to understand, if not accept, her role as the mother of a child with SMA. “Blake is different. He requires extra help with every day needs,” she says. Blake depends on his family to advocate for his health, to do important research, to see that he receives care from the most competent specialists. This kind of work was uncharted territory for Gwen, but she says, “ It amazes me what the power of love will do to help someone else. I speak up. I question. I call. I call again. I get answers. I don’t get answers. I call back. I persevere. My son’s life is at stake.”

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Blake (18 months) and Gwen

Almost one year after Blake’s diagnosis, the Sternhagens have moved into a handicap-accessible home, built with Blake’s future in mind. They designed their home with stairless entries, a walk-in shower, an open bathroom vanity to accomodate Blake’s wheelchair, a bathroom and bedroom designed to work with a lift system, wide hallways, handicap accessible doors, and a wheelchair accessible kitchen island for roll-up eating. They are enjoying their new home, settling into rhythms and routines of family life, balancing responsibilities and recreation just like a typical family, with the exception of one important distinction. At this time of year, with cold and flu season looming, a fair amount of energy is spent trying not to be consumed with worry about illness. With Blake’s compromised lung function, a sneeze, sniffle, or cough from either of the boys can be alarming. And though Gwen knows full well that regular doses of hand sanitizer along with essential oils diffused into the air and layered on family members’ feet can’t ward off all germs,  a simple, physical act can bring a momma some peace, so Gwen and Scott make efforts in small things. Blake is cared for by family members and close friends, and is kept away from sick people and crowds more diligently than most toddlers would be. Gwen knows that she cannot orchestrate every moment of Blake’s life or control complicated things like germs and illness. She can’t predict the future or know what lies ahead for her dear son. But she is fully confident in this: Spinal Muscular Atrophy is not going to break her family.

Blake is a strong boy with a solid support system. He is a fighter –a warrior. In occupational therapy, he has already met three out of four goals — goals that were set only four months ago. In aquatic therapy, Blake has progressed from crying immediately upon entering the pool to playing for an hour in the water. He will now wear his water collar safety device for ten minutes without protesting, compared to one or two minutes initially. He is surrounded with a phenomenal healthcare structure and is adored by all who know him — his pediatrician often promises, “anything for Blake.”  All of his core specialists (SMA, mobility, and pediatric neurology), are impressed that Blake, a patient who was predicted to be on a ventilator by now, is doing phenomenally well with only therapy and at-home breathing treatments. On a good day, Blake can even sit unsupported for thirty minutes, a task that sounds so little to most, but is BIG for Blake.

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Blake at 18 months

Spinal Muscular Atrophy has turned the Sternhagen family upside-down, but it has also opened doors that may have otherwise remained closed. In becoming a part of the SMA community, the Sternhagens have met strong, inspirational people, and are reminded daily that they are not alone in this journey. Because of Blake’s life-altering diagnosis, Gwen has become more aware of and focused on the blessings God has granted her: a loving husband who supports and provides, two spirited boys that bring deep joy and fulfillment to her days, a family that will do anything to help and support the Sternhagens. Compassionate friends are treasured more than ever before, and new friendships have blossomed even in the midst of grief.

Some of life’s richest blessings are born of trials.

Although their routines and perspectives have changed, Gwen and Scott have faced and embraced those changes. Gwen believes that “how one adapts to change makes all the difference.” She still dreams of her boys “smiling and doing all the things little boys love to do. It looks a little different in our world, but different can and will be okay. We can still have four-wheeler rides and trips to camp. We will still have our vacation to Disneyland one day. It may not look exactly like it did before SMA, but we will provide all the opportunities to our boys that we once imagined.  We will do our very best to keep dreams alive for us and for our children. We believe for Blake and Tyler. We believe for our future. We believe.”

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Blake (18 months), Gwen, Tyler (3 years)

To learn more about Spinal Muscular Atrophy, or to make a donation to fund SMA research, please visit Cure SMA at curesma.org

9 thoughts on “Grand Edits with Gwen Sternhagen: Revising Life with an SMA-diagnosed Child

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