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Stronger Together WWG

Stronger Together WWG

“We are stronger together”

William's story

In July of 2017, Jim and I were expecting the newest addition to our family to arrive in mid-September. We were over the moon to see our darling Millie become a big sister. Around 30 weeks, we learned that our baby had a serious birth defect called Congenital Diaphragmatic Hernia (CDH) and we were transferred from GBMC to the Johns Hopkins Center for Fetal Therapy to monitor our pregnancy much more closely. We were told that the longer I could carry this baby to term, the better the outcome because of the long journey ahead, with surgery when the baby was born, and a lengthy stay in the NICU as he would try to recover. We spent a few short weeks learning as much about CDH as we could, and we were ready to take on the challenge for our little guy. Unfortunately, I went into labor with our baby boy, and as hard as our wonderful doctors tried, they couldn’t prevent William from being born at exactly 32 weeks. Between the prematurity, and the CDH, William’s obstacles were too much for his fragile, yet perfect little body to bear. We lost him after 1 day of life. He was baptized before he passed away in our arms, William Wenceslaus Gillis, and we know he is in heaven, our angel to watch over his family forever.

While his time with us was unimaginably short, William taught us many life lessons that only he could bring to our family. He showed Jim and I that our marriage is unbelievably strong, as we were always on the same page about his care and the decisions we had to make. He showed me that I need to slow down, and take more time to care for myself and that life will always be crazy, so as hard as you can, try not to get wrapped up in the rat race. He also spared us a long few months of dividing our time between a toddler at home, and keeping her life as normal as possible, when also trying to cheer him on for months in the NICU, without ever knowing if he would recover. While we would have happily done that to save him, we do also see the positives in his short time with us.

Most importantly though, he taught us about compassion, dignity, and love for one another. The care that our family received at Johns Hopkins was truly unbelievable. From the doctor’s in the NICU, with tears in their eyes, telling us what an honor it was for them to care for sweet little William as he passed away, to the nurse who was texting us days later, from her family vacation, just to check on our little boy, the compassionate care from every single person, from the housekeeping staff, to my doctor whose last minute decision saved me from surgery so that I could be well to care for William, they made our darkest hours bearable, and we are grateful for all of them, and so, so, proud of each and every one of them who tried to save William. One thing that we took away from our experience, as we got to know our team personally, was how different we all were, yet, none of that mattered when we were in their care. All that mattered to them was saving William, helping to guide two frightened parents down an agonizing journey, and making our last moments with our son the most peaceful and meaningful that they could be. In this crazy world we live in, that was the best gift he could have given us, to remind us that we all just want the same things in life. Safety for our families, and love and compassion during our hardest times.

We hope to live our lives more fully in William’s memory, to lend a hand to strangers in need, to love and support one another in good times and in bad, and to show Millie that caring hearts, strong minds, and more love for one another will make our world a better, and more beautiful place. To our family and friends, your support and generosity during our journey was a gift, and we are beyond grateful. To our amazing angel above, we love you with every ounce of our being, William, and mommy and daddy will not let you be forgotten.

After some time for our family to grow stronger from this experience, it is time for us to begin to give back to the staff at the Johns Hopkins Children's Center who gave us so much. Thank you to everyone for considering joining our team to honor William and support this great institution. We are grateful. #StrongerTogetherWWG


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