As many of you know, our Elsa was born full-term and right on time. We had no idea she wasn't a typically developing baby girl until the very minute she was born.
Chromosome, chromosome... That's all we heard, as she was taken from my arms.
The delivery room hushed and everything changed. From that moment forward, it was obvious that our lives as parents weren't going to be straight-forward or "normal." At least not in a way we could have expected.
Since learning of Elsa's WHS diagnosis, I've met lots of parents of children with special needs. We all share a moment like this, where reality shifted forever. But the heartache and worry of such a specific marker in time wasn't something I could share with a friend or family member who was in my life before learning the gravity of Elsa's syndrome.
Until one day, my dear friend (and former cube mate) Mary Birkhauser shared that her son also would be on his own unique path. Here's her story - Jack's story - and the major lessons she's learned along the way:
Everything was normal, until it wasn't...
During my 20-week ultrasound, my presumably normal pregnancy took a wildly unexpected turn. That's when my first-born son was diagnosed with a benign arachnoid cyst in his brain.
Benign arachnoid cyst. I miss the days when those words were so foreign that we forgot them shortly after leaving the doctor's office. Benign. At least that had a positive connotation. The rest of it might as well have been Greek. All we knew was that our baby's brain anatomy wasn't normal. No one could tell us what it meant for our sweet boy and his future.
In that moment, it was overwhelmingly apparent how little control I had over my life, and my son's. While it wasn't the first time my husband and I had come to this realization, Jack's story cemented it. We had a few choices to make: Either trust that God's plan for Jack's life is good, or question it. Either believe that God has a specific plan for Jack (brain cyst included), or become consumed with worry and fear daily.
And, at the foundation of these choices, was a core question: Do we believe that God loves Jack, regardless of what his life may hold? The answer was a resounding YES.
Keeping faith through uncertainty
At just two weeks old, our newborn baby underwent brain surgery. Jack spent 12 days in the NICU. There were unexpected complications, and it was incredibly scary. Yet, fast-forward 2.5 years and our sweet Jack has developed incredibly normally. His life is seemingly unchanged by all of this, thus far, and our bright and cheerful son shows no delay among his peers.
Despite this amazing news, being Jack's parents is still a continual lesson in trusting God's plans. His surgery reduced the cyst's size but didn't remove it altogether. His brain anatomy will always be very abnormal. Every time we have a follow-up with the neurosurgeon, or if Jack doesn't hit a typical milestone right on time, we can either choose to worry or choose to trust.
When we step back and look at the big picture, we realize that "normal" would have been a lot easier. Yet, we wouldn't trade the journey of Jack's life for any amount of comfort. To us, and to many others who know him, Jack stands as a living testimony of answered prayers, enduring faith and God's promises fulfilled.
Mary Birkhauser lives in suburban Chicago with her husband and two sons.