It’s Salem Ridge Snell’s first birthday!!!

He’s our third bundle of joy and wow! He has made his presence known! He is such a delight. His big-eyed smile and high-squeal of a laugh are irresistible and quickly become the goal and fascination of all who meet him.

He is unique in that developmentally he is at the level of a six-month-old due to the rare 5q12 syndrome he was born with. Only 10 others in the medical literature have it. For him it means that at least 40 genes on his 5q chromosome have been deleted somehow. It wasn’t anything inherited, but a mishap in his cellular division that got passed on and on and on as he grew in Deanne’s womb. This is the cause of the developmental delay he experiences in every area from cognition to physical abilities. He has yet to figure out crawling and verbal communication of any kind other than crying when he needs something. He is expected to be short and small and has fallen off of the growth curve charts. He crosses his eyes and may continue to have sight issues for the rest of his days. He may also be autistic and there are some characteristics that seem to point that direction but it’s too soon to tell.

Before he woke up this morning I was reflecting on how he has impacted my life for the better in just 365 days. For me Salem is a regular reminder of two things: presence and promise.

If I want to connect with my beloved youngest I have to slow my hurried life and be present. He lives life at a more leisurely and peaceful pace. He daily invites me into his rhythm as he rolls around the floor and babbles to the ceiling fan’s pretty lights. If I’m going to get even a smirk out of him I have to give him my full attention whether I thrill his little body by tossing him gently into the air or make all manner of crazy sounds to get his attention. Never have I regretted stopping and staring in heartwarming wonder at my precious boy. Let the moments while away as I observe his simple stirrings and savor every stage of his prolonged growth. When I’m present, when normal predications are paused and I’m loving my baby as he is, I’m at peace.

Promise helps with the pain that sneaks up when my mind wanders to what “should” be. Those expectations can enslave, but the hope I have in Jesus’ assurance that he will make everything new gives hope where the doctors at our multitude of appointments haven’t been able to give any.

Some have asked if finally knowing his diagnosis after months of wondering has made it any easier. Nope, it hasn’t. Before we were expecting hard news, now we have received it and it is harder than we anticipated.

What makes it easier is knowing that this is not the end. Our doctors can’t prescribe any pills that can change this reality. But, Jesus, the physician’s pledge to return and remake has never mattered more to me. It’s never brought healing tears like this. What makes it easier is knowing that God knew, that He gave us his name while he was forming. Salem is a Hebrew word that means peace, completion, and wholeness. Ridge is taken from Revelation 21:10 where the apostle John was standing on a mountain watching in vision the coming of the new Jerusalem coming out of Heaven. So Deanne and I stand on this elevated ground of presence and promise holding our Salem close to our hearts with eyes of hope scanning the sky and ears listening for Jesus’ invitation to come into that Holy City where this life will be a far distant memory.

I believe God is working all this together for good, bringing us wholeness through brokenness  because in truth, it is only Jesus’ presence and promise in our lives, not able bodied children or smooth living, that can complete any of us for now or forever.

Whatever your struggle is, may you not endure it without these gifts. May Jesus’ presence and promise be yours and bring deeper meaning to your experience in now and your hope for later.