Pediatric Stroke: Malachi’s Story of Hope
Shortly after Drew and Bethany’s son Malachi turned three months old, they were awakened in the wee hours of the morning to the sound of Malachi stirring restlessly. Bethany immediately went to Malachi and found him turning his head to the left, followed by an episode of vomiting. She and Drew spent the better part of the night rocking and consoling him, wondering if this was a parenting rite of passage or if Malachi could be coming down with a virus.
Bethany remembers, “I was rocking him in the kitchen, and I hit panic mode. I began singing the worship song ‘All Who are Thirsty.’ It’s such an old song, but it was the only thing coming to mind.” The line that says, “All of the sorrow be washed away” was the cry of her heart as she sang the words of the song over him.
Malachi was finally able to fall asleep around 4:00am and woke up at 7:00am, like he typically did. Everything seemed normal, and Drew and Bethany breathed a sigh of relief that they had made it through a tough night. Shortly after Malachi woke up, though, Drew placed him on the changing pad for a routine diaper change. When Malachi looked up at his daddy and gave a big smile, his face had a pronounced facial droop on the left side.
“In that moment,” Drew recalls, “we realized that this was more than we thought it was.”
“We both went into panic mode,” Bethany agrees. Bethany quickly called her mom, a pediatric nurse, and Malachi’s pediatrician, and they rushed Malachi to the ER at Scottish Rite.
Discovering Malachi’s brain bleed
The first of countless reminders of God’s presence and kindness in their story came as Bethany’s mom was waiting for them when they arrived. A nurse at Scottish Rite, she had just been switched to the same floor that was running the CT’s and MRI’s and was working that morning. Her presence with them that day was such a gift as they navigated new terminology and the unknowns of what was in store.
After a CT scan, Bethany and Drew learned that Malachi had experienced a brain bleed and would be admitted to the hospital. While they weren’t able to determine the cause of the stroke, they did learn that a malformation of blood vessels had ruptured towards the center of his brain. Due to the location of the bleed, they knew that his motor control would be affected. But because he was so young, it was difficult to know what the long term effects would be.
Their days at the hospital were marked by feeling overwhelmed and uncertain of what was happening to their precious son. Drew remembers, “We definitely had a few moments of worrying, ‘Is my child okay? Is he going to survive?’, but 90% of the time, we just felt shock.”
That first full day in particular when they were in a waiting period and didn’t have answers, their church community was faithful to send a steady stream of encouraging text messages.
Bethany remembers, “Our community was literally holding me together that day. I had a peace come over me that I knew was not me. I’m usually a puddle in moments like this, but I felt held. I literally felt held.”
Bethany is quick to point out that there were still raw moments, too. A friend came to visit them in the hospital and gave Bethany permission to be truly honest. In that moment Bethany realized, “I wasn’t faking it, but I was saying 90% truths. We felt held by our community, but I also felt misery. I was able to share honestly the good that we saw along with the ugly, and that was so helpful.”
Facing the effects of a cavernous hemangioma rupture
As the Mapleswrights learned more about Malachi’s stroke, they began the first steps of grieving the life they had once known. Apart from the fear of losing him, one of Bethany’s biggest heartaches in those first few days was the fear of losing Malachi’s smile. His smile was a bright light to her heart, and she wondered if she would ever see that smile again.
After a week at the hospital came to a close, Drew and Bethany knew there was still a lot to learn about Malachi’s formal diagnosis: a stroke from a cavernous hemangioma rupture that resulted in a left-sided hemiparesis, a speech delay, and other developmental delays. It was a lot to take in. They were given an overwhelming number of action steps for the next six months, but they also began to receive some encouragement in Malachi’s facial droop that began to lessen significantly.
The Mapleswrights began to adjust to life at home again, and Bethany returned to work at a nearby preschool. At work she began to see younger babies surpass Malachi in achieving milestones, and she knew that Malachi needed more help and support. It was a push and a pull of not wanting to accept the reality of his needs and Bethany and Drew’s love and desire to help their son as much as they could.
Malachi soon began physical therapy, occupational therapy, and speech therapy every week, and he continues that schedule today, along with attending special needs preschool. Bethany recalls, “We still don’t have a rubric for this because doctors are hesitant to say what he will and won’t do. His delays were subtle and the unknown nature of the effects of the stroke often leave me in a place of wondering if and when he will meet the next milestone. I have to grieve my expectations of what his life will look like physically, emotionally, and socially. But if anything, it gives you this electric joy whenever he does meet the milestones. When Malachi first walked, it was Christmas Eve, and it has made those moments become so much sweeter. He said mama for the first time this year at almost three years old, and it had me bawling.”
Today Malachi is a happy and spirited three and a half year old and a proud big brother to one year old Joel. Malachi is hilarious, he loves to sing, and he loves hip hop and 70’s music. Bethany says, “He lights up the room and has taught me so much about being resilient. I watch him go to therapy with a smile and overcome massive things, and it brings perspective to my own struggles. He’s a warrior, and he will do great things.”
Recognizing God’s presence
Drew and Bethany were both courageously honest and humble in describing the way they have navigated the last few years. Drew says, “Initially, I dealt with a lot of anxiety about a stroke happening again. I wasn’t comfortable being home alone with Malachi in case something happened and I didn’t know how to handle it.”
Bethany adds, “We both dealt with the guilt of wondering if we caused the stroke. Studies don’t support that, but our minds still went there.”
Yet in the midst of the swirling fear and overwhelming months, the Lord was faithfully present. Bethany remembers, “The first eight months were really difficult, and coming back to church was hard for us. Whenever I would take the courage to go, ‘All Who are Thirsty’ was sung. It wasn’t a trendy song at the time. But every time I would go to church it was sung, and I would stand in the back bawling, remembering that night rocking Malachi in the kitchen. There were so many details like that along the way, and we couldn’t deny God’s hand in it all. If you’re looking, He’s there.”
Bethany continues honestly, “We did not go into this season from a place of strength. I wouldn’t say we had been journaling every morning and our prayer life was perfect before it all happened. We went into it broken, and we were still dealing with things, but God made it very clear that He was there. His grace carried us.”
Drew agrees, “That’s it, too. Those moments happened concurrently with our questions. We would ask God, ‘Why would you allow this to happen?’ and express anger or frustration with not understanding. And that is even more of a testament to grace, right? He is a good father. He will listen to us speak bluntly like that while at the same time wrapping His hands around us and actually taking care of us by showing us who He is in those details.”
Walking together with strength and hope
In reflecting on the last few years, Drew and Bethany have gained such wisdom, and we asked them to share some of their greatest lessons. Bethany reflects, “Something I wish I knew in those first days at the hospital is that we were going to have to be a team real quick, and I didn’t recruit my team member for a long time because I didn’t think I needed to. I was grieving in my way, and he was grieving in his way. It was important for us to do that, but it would have been so much better if we understood that as a team. Whatever the diagnosis, there’s probably a road ahead, whether that's just follow ups or intensive therapy, or more than that. Get in team mode so you can work together.”
From a father’s perspective, Drew shares, “I would encourage men to not disengage from the situation. To open up a little more about us, I checked all the boxes for that first year. I was faithful, I worked hard, and I was a good husband in that respect, but I was not the best husband when it came to the emotional side of things and pretty well buried myself in activities. Putting my hands to something tangible that I could concretely do was my way of dealing with the grief. I avoided a ton of emotions for a long, long time, but I learned that my family needed me emotionally. That didn’t have to look like I had it all figured out and that I had all the answers. I think that’s a false image. I think strength is being willing to be present despite not knowing those answers.”
As we talked, Drew shared his perspective on what hope means to him. His answer reflects his courage and his heart to lead and care for his family, “Hope is the semi-settled state of believing and trusting that no matter what happens, God is working things for your good and his glory. I say semi-settled because we don’t always feel it, but it’s a truth you always return back to. And it’s settled on His part, and that runs deep.”
Hope is a powerful force, and the Mapleswrights speak from their hearts about it from their hard-earned wisdom, borne out of all that God has brought them through and the ways He continues to carry them. Drew and Bethany continue to trust in the Lord’s plan for Malachi, and they work together to nurture their family. They are known by their community for their example of selfless service to others and a deep love for the Lord, each other, and their sons. And today? Malachi smiles. “He’s still got the biggest smile ever,” Bethany shares with a smile of her own, “and it is a constant reminder to me of the faithfulness of God.”
“Come, everyone who thirsts,
Come to the waters;
And he who has no money,
Come, buy and eat!
Come, buy wine and milk without money and without price.
For you shall go out in joy
And be led forth in peace;
The mountains and the hills before you
Shall break forth into singing,
And all the trees of the field shall clap their hands.”
Isaiah 55:1,13
You can also read an article that Bethany contributed to helloHOPE about “Facing fears with truth and hope.”
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