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Life is Meant to be Enlivening


Enliven = to make someone more cheerful

There have been hundreds of days when Levi has had to stay home while Younger Brother and I went off on an adventure. Levi was too sick, not well enough, the weather was too cold, too windy, he had a therapy sessions coming up at home, on and on it goes.

With each departure I always feel such a mix of emotions -for him, for me, for our family. In winter this moment gets repeated over and over again. Levi only ventures out for a weekly water therapy session, family holiday gatherings, occasionally church, and only the most critical of clinic visits. This winter, between illness and weather, he has repeatedly been home for weeks on end.

Meanwhile Younger Brother leaves for preschool, winter sports, playdates, grocery shopping, outdoor adventures, church activities, backyard playtime…

This past Sunday I had an opportunity to flip the script.

Younger Brother and Papa awoke with a seasonal cold. It was clearly going to be a stay at home day for them. We had plans that afternoon to go hear the most famous viola player in our world, Valerie, perform with her Mill City String Quartet. All morning I wrestled with if we should all stay home so I could help care for everyone?

By noon, it dawned on me that for the first time in a very long time, it would be to Levi’s benefit to leave the house this afternoon. We had before us an opportunity for he and I to leave the house, just us two, and go on our own adventure. Not to a clinic or a therapy appointment, but something fun and interesting.

Something Enlivening!

So for all the hundreds of times Levi has had to stay home, I decided today we would live life differently. Today he would get to be the one saying goodbye to his brother as I packed up his many bags and loaded up the car.

He would get to

enjoy the afternoon sun on his face

the brisk winter fresh air

attend a concert

hear the soul-lifting sounds of live quartet music

mingle with friends after the concert

go out to dinner afterwards

come home just before bedtime

stay up later than usual

All those little moments that collectively bring about joy and a greater quality of life.

Moments that “just happen” for Younger Brother, but have to be purposefully orchestrated for Levi.

Moments that feed our souls for a long time.

As we were driving through the afternoon sunshine, I couldn’t help but reflect back on the conversations I had 5-6 years earlier with Levi’s pediatric palliative care team and again with his early intervention education teams (public school). Back then, long before Younger Brother arrived, it was so difficult for me to take initiative on moments like these. Even on a perfect sunny summer day. So much so that we had to create a school goal of Levi and I “getting out in the community” more consistently so he could interact with the larger world.

Being Mama to a child with a complex medical condition is easily isolating. There are a million reasons to stay home, most of which focus on keeping your child safe and in good health. Add to this the consequences of long winters in Minnesota and you have a perfect recipe for cabin fever.

It is so wild to consider how far Levi and I have come over these past 7 years. Even as recent as a year ago, I would have easily cancelled our outing and stayed home. There would have been no second thoughts.

I am so thankful for those early voices in his life who encouraged me to do more than take care of Levi’s medical needs. Who talked about quality of life for both he and I. Who helped me identify ways I was successfully tending to Levi’s soul within the comforts of our home, and challenged me to expand that love into a broader community context. Who celebrated with me when I pressed through the threshold of my fears by taking Levi on an outing that was simply about having fun together.

I still hear their voices today, encouraging me on and celebrating with me.

Thank you dear friends.

Indeed life is meant to be enlivening.

To bring about cheerfulness in ourselves and others.

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