How do you hold onto hope after the worst kind of heartbreak? My guest on this episode of About Your Mother channeled her heartbreak into creating solutions for others.
In 2012, Carrie Meghie experienced a parent’s worst nightmare: after months in the NICU, her 10-month-old son passed away. Listen as she shares how she navigated the loss and continues to live with a broken heart.
Carrie and her husband used their experience to help others by founding the Jackson Chance Foundation, an organization that covers parking costs for parents visiting their children in Chicago NICUs.
The Reality of Life in the NICU
Carrie’s son Jackson spent almost his entire life in the NICU. It’s every parent’s worst nightmare, and most people don’t have a clear picture of what life in the NICU is actually like. Here’s a glimpse into Carrie’s experience:
- It was important for her to be there as much as possible, so she brought her laptop and set up a workstation in the hospital
- Her husband made sure everything was taken care of at home so that Carrie could spend more time with Jackson
- In the NICU, your baby’s medical state can change drastically in a short period of time. Carrie met with several medical teams and took copious notes
- Thanks to her diligence, the medical teams began consulting with Carrie and her husband to get their opinion on Jackson’s care
- There are several NICU moments, like the baby’s first bath, that are huge milestones
Despite his hard life, Jackson was an incredibly smiley and joyful baby. Carrie was adamant about keeping as much stress out of his hospital room as possible. If she needed to cry, she went somewhere else so the environment around Jackson stayed positive.
Turning Pain Into Purpose
After ten months in the NICU, Jackson was doing well and being prepped to finally go home. Unfortunately, things took a turn for the worse, and he ended up passing away.
The pain of losing him was unimaginable, but Carrie didn’t let herself get swept away by it. She never wanted others to pity her for her experience. To her, being Jackson’s mom for 10 months was a blessing, and his short life brought more joy to the world than many do in a much longer timeframe.
She felt like it would disrespect Jackson’s legacy to let his death ruin her life. Instead, she talked about him freely and positively, highlighting the wonderful things about being his mom rather than the heartbreak of losing him.
During Jackson’s life, Carrie was shocked that paying to park at the hospital was the largest out-of-pocket expense that she and her husband incurred. They realized that for some families, it was a major hurdle to how often, and for how long, they could visit their NICU baby.
The last thing Carrie wanted was parking costs to keep a parent from seeing their baby in the NICU.
The Jackson Chance Foundation provides a free parking pass to Chicago hospitals, giving parents flexibility. They can go in and out of the parking garage as much as they need, making it easier to stop by before work to drop off breast milk, visit during a lunch break, and return after work without paying parking fees for each visit.
Trusting Your Maternal Instinct to Advocate For Your Child
During Jackson’s NICU stay, Carrie received conflicting medical advice and was often left overwhelmed. Eventually, she learned to trust her own maternal instinct. While she respected the advice she received from medical professionals, she recognized they were people bringing their own experiences and preferences.
Carrie knew that she was the only consistent person on Jackson’s medical team, so she didn’t blindly follow advice. Instead, she and her husband formed a united front to advocate for the best possible care for Jackson.
Carrie also relied on her own mom for support during and after Jackson’s life. She credits her mom’s strength for her perspective and perseverance.
How to Support Mothers Who Have Lost Children
Child loss is devastating, and most people don’t know how to support someone they love who’s going through it. Too often, people say nothing at all for fear of saying the wrong thing.
Every mom is different, so there’s no one-size-fits-all advice for supporting them. For Carrie, talking about Jackson mattered. She wanted to say his name and share his story. She didn’t want people to feel afraid to ask her about him. In her opinion, saying the wrong thing is better than saying nothing.
Living With a Broken Heart
Carrie disagrees with the sentiment that “time heals all wounds.” Her heart is forever broken by Jackson’s loss. The joy in her life that followed his death is the glue that holds her heart together, but it still is and forever will be broken.
Acknowledging her broken heart, rather than ignoring it, has helped Carrie keep a positive perspective and live with purpose.
