World Down Syndrome Day (2016)

This year, March 21st finds our little guy at three years old. And it finds our family with a little more knowledge, a little more experience, and always so much to learn.

What has it meant to live with someone with Down syndrome this past year?

It has meant appreciating the village. The village of support we have is beyond what I ever could have dreamed. From his teachers and therapists to our family and friends, and even beyond to acquaintances and strangers, our interactions regarding having a child with Down syndrome are overwhelmingly positive. My favorite part of the village however, has to be Luke’s siblings. I’ve seen variations of this quote: “If you want to know how to treat someone with special needs, watch their siblings.” It is so true! Few things make my heart happier than to witness this. They meet him right where he is and then treat him with the same love, compassion, playfulness, and annoyance as their other siblings. With them, there’s no underlying therapeutic motive, and there’s no extra attention because he has a disability. With his siblings, he can most perfectly experience what life is like as a typical kid. More than anything, this is what I want for him! And this circle of siblings is the most blessed foundation for that.

It has also meant slowing down. Life is busy and life is fast. I often find myself too preoccupied with my daily tasks to stop and notice the little things. I have a hard time slowing myself down. Luke naturally takes things a little slower, and when I let him, Luke slows me down too.

Recently we took the kids on a little road trip. We stopped at a rest area to stretch our legs and it happened to sit along a portion of one of Tennessee’s scenic rivers. We all hiked down a small hill to adventure for a bit. On the way back up, the other kids took off running. Luke stuck close to me and Steven as he maneuvered the uneven terrain. I was tempted to pick him up and carry him so we could catch up to the others, but we really wanted him to stretch his legs before getting back in the car. So we let him walk. We let him be a little slower and we slowed down with him. And slowing down allowed me to see. It allowed me to see the way Jacob exactly followed the path his big brother and sister took. It allowed me to see how the rays of the setting sun streamed over them as they crested the top of the hill. It allowed me to breath in deeply the smells of early spring flowing from the river and its surrounding foliage. And it allowed me a chance to grasp my husband’s hand and just simply be in that moment with my family.

This past year I’ve discovered that Down syndrome means slowing down life just a little so we can walk it next to Luke, and what a beautiful blessing that is!

I’m sure I could write more, as we are constantly learning, but these are the highlights! This journey is not without its moments of frustration, but it is truly one of love, blessings, and celebration. And we got to celebrate a few big milestones this year! Sleeping in a big boy bed, participating in his first Buddy Walk, finally getting all of his teeth, saying “mama”…

It has been a blessed year with our Luke and we are so grateful that we get to share our lives with this person, who just happens to also have Down syndrome.

– Sarah