Matt and Chandra Sooter had always envisioned what their perfect family would look like. They had always wanted three kids and, in the summer of 2016, they were two-thirds of the way toward making that a reality.
Four-year-old Jackson and 2-year-old Addy were best friends and partners in crime and the Sooters were talking about adding a third sibling to their little posse soon.
But then, in an instant, everything changed.
The family had spent the day at an amusement park when the kids’ grandmother noticed Addy was walking funny. At first, the family wrote it off to her being tired after a long day, but as the days and weeks went by, that little limp turned into big stumbles and falls.
Concerned, Matt and Chandra took her in for an MRI, and that’s where their worst fear was confirmed.
Addy was diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG), a rare, aggressive – and terminal – brain tumor that affects young children. The cancer has a less than 1-percent survival rate.
“Life, and all other plans, immediately went on pause,” Matt said, “including those for a new addition to the family.”
Over the coming months, the family rode a heartbreaking rollercoaster of treatments, regression, and progression. Addy was a fighter and there were times when it looked like the treatment was working, but inevitably the cancer would come back and spread further.
During that time, a good friend of the family became pregnant and Addy was enamored with her. She wanted to be a big sister so badly.
“The idea of a baby, not as a replacement for our little girl, but as a way to bring joy into her life, came back into the picture,” Matt said.
“A baby had obviously been discussed numerous times over the past two years, so it wasn’t a new idea and we knew it was something that would bring so much joy to Addy – to know she was going to be a big sister,” he continued. “We knew we didn’t have much time left with her, but our hope was that we would have her long enough to be able to tell her she was going to be a big sister. It would have lit up her world.”
Sadly, Addy never got to hear that news. On June 3, she “stubbornly but peacefully” passed away surrounded by her loving family.
The Sooters were heartbroken. They couldn’t imagine life without their sweet Addy.
But as the family came together to grieve, they had no idea that something big was about to happen.
Just three weeks after Addy passed away, Chandra found out she was ex[ecting. She had actually become pregnant about a week and a half before Addy died.
“The news of a new baby on the way was wonderful. At the same time, it came with a sense of loss,” Matt said. “We are joyful for the life God has entrusted to us, but at the same time still grieving the loss of our ‘sissy.’”
While this new little life can never fill the hole Addy’s passing has left in the Sooters’ lives, this baby is already bringing hope into what had once seemed a hopeless situation.
“We look forward with great anticipation to meeting our new addition!” Matt said. “At the same time, we feel sorry for this new one because it seems we are not the same parents, the same people, that our sweet Addy knew. We are sorry this child will never know their sister except for the pictures, videos, and stories we share of her.
“However, we are so excited to have this new little one and look forward to watching them grow up and blossom into the person God intends for them to be. We love our baby so much already; just as we love our Jackson and our Addy.”
“Always remember,” Matt said with hope, “God is in this situation, He’s up to something, and He’s up to something GOOD.”
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