Our Special Needs Journey

In 2018 our family of 6 expanded to a family of 7 through the paperwork pregnancy of adoption. A stack of paperwork wasn’t the only thing that had grown, though. Our hearts had. There were a number of factors that prompted us to walk this road, and specifically to walk into the world of special needs adoption. To make a long story short, though, in the fall of 2017 we were matched with a precious baby boy with spina bifida and hydrocephalus who was “still cooking.” He made his big debut at the end of January 2018 and we’ve been a family since day 1 of his life. I’ve often called him our “exclamation point!” on the family because he lives life with such enthusiasm!

I also thought he was the end of the story of our family growth, but God had other plans!

It was because of Jonathan that I even thought things might be taking a turn in our family’s story. One morning in May of 2022, he made an off-topic comment about wanting 76 sisters. I laughed and said that would never happen unless we opened an orphanage! But then something about him mentioning a sister got me calculating, and I suddenly realized a pregnancy test might not be a bad idea. You can probably guess what happened next: it was VERY POSITIVE.

Russ and I were thrilled to have this big surprise. This baby gave me the easiest, nausea-free, delightful pregnancy. We instantly thought we were having a girl and her name should be MonaJean, named after our mothers.

Halfway through the pregnancy, we had her anatomy scan, and after another confirming ultrasound, we learned that we were indeed having a girl! And we also learned would not have one child with spina bifida, but two. This time, though, it wasn’t a mere birth defect we were navigating. We were navigating the life-limiting diagnosis of Edwards Syndrome, Trisomy 18, which had impacted every organ of her body, especially her heart.

MonaJean was with us for 3 weeks before the Lord took her home.

Our world has been rocked by two children with disabilities. We are left in a place of journeying through the grief of losing a child to disability and the complicated layers of maneuvering through life with a child living with disability.

Walking this road leads to many thoughts about life, God, and His very present help. You’ll read more about that in this section.