“I’m SINGING IN THE RAIN! JUST SINGING IN THE RAIN! WHAT A GLORIOUS FEELING…” Jones belted the old song from the top of his lungs while holding and spinning Finley at top speed. She squealed with delight and could barely catch her breath from the laughter. 

“MA!” Finley exclaimed as soon as Jones fell on the couch at the conclusion of the song.

“Again!?” Jones asked with pretend shock. 

“Yeah, mmmm!” Finley affirmed with her sweet way of saying, ‘yes, please.’

“Ok! Here we go!” Jones announced, standing to his feet with his eight-year-old sister in his arms, holding her like a giant baby. “I’M SINGING IN THE RAIN! JUST SINGING IN THE RAIN!” Finley could barely catch her breath, she was laughing so hard. 

Laughing to myself, I had to look away. The spinning and swinging made me nervous, afraid of Jones accidentally hitting Finley on a nearby piece of furniture or wall.  I knew how much Finley loved the thrill of the fast, crazy movements and, even more, loved the attention her big brother was giving her. She was drinking it in, savoring every ounce of the love he was expressing to her at that moment. 

Jones proceeded to spin and sing at the top of his loud voice over and over again. Same routine, “MA!!” “AGAIN?!” “Yeah, mmmm!” “I’m SINGING IN THE RAIN…” My heart was full of gratitude that Finley has siblings who love her and care for her. 

“Thank you, Jesus.” I whispered quietly to myself. I wanted to freeze this moment in my memory, hold it in my heart and put the memory on repeat. An attempt to move towards celebration rather than moving towards fear. I felt challenged by God to learn a new way of celebration. One that was marked by daily thanksgiving rather than meeting milestones or achieving a desired goal. One that actively looked for ways to “Taste and see that the Lord is good” Psalm 34:8. He is not just good when big goals are met or awards are won. We can taste and see that he is good in the monotony of life, through the painful times, through the valleys and deserts. We may not be able to see it easily, but God’s goodness and provision shines through it all. 

With special needs, or any chronic condition there can be a sense of impending doom making celebration challenging. The feeling of, “everything is ok right now, but just wait.” I often worry about what will happen to Finley in the future. It is easy for me to get whisked away in the furious current of thoughts and fears for Finley’s future. I can easily be bombarded with these worries…

How will I cope when Finley starts her period? 

How do I take care of her when she starts developing as a woman with dignity? 

When will she realize that she is different from other kids and needs to talk about it, but can’t express that to me so she is suffering inside with no way to get it out? 

Has she already realized that?! 

How will we physically care for her as she gets bigger? 

What if she is taken advantage of but we don’t know because she can’t tell us? 

Who will take care of her when we are gone? 

How will we provide for her when we are gone? 

Will our older kids help her when we are old? 

Will she outlive our whole family? Then what?

Will our older three feel like she is a burden? 

Will they resent us if we are unable to leave enough to provide for Finley? 

Will they resent God for having to take care of their sister?

Fear-filled thoughts weigh me down when I begin to think about Finley’s future. What about you, dear reader? What worries are whirling around in your heart and mind today? Choosing to savor this sweet moment between Jones and Finley was a decision, a choice. Celebration used to come naturally to me, some would say I was gifted in the area of celebration. But slowly, over the years as I have cared for a child with special needs, I have found myself questioning when to celebrate. When you have a brain injury of any kind you may do something once, say a word, do a new skill that you have been working towards, move your body in a way it should move but doesn’t. The ones around you will get excited and celebrate believing a breakthrough is being made, only to discover that this was just a one-time occurrence and it may never happen again, or it may take years to do it again.

I remember hearing a story of my Pop who had a couple of strokes in his later years that took away his ability to speak and some of his mobility. One day, out of the blue, he turned to my grandma and said, “I’m going to go mow the yard.” She was shocked! Could his speech be returning? Those were some of the last words he ever spoke clearly again. The same is true for Finley. When she was five-years-old she has said my dad’s grandpa’s name, “Papa,” once. Never again. She said a clear “BYE!” probably four times in her eight years. She clearly said to Jones once, “I love you.” My mom witnessed it! It was a beautiful moment that brought renewed hope that maybe, just maybe she was beginning to talk. Usually, when a child learns how to say a word it is the beginning of them adding it regularly to their vocabulary, but that is not always the case for those with brain injuries. The typical timelines of milestones are eradicated. We are learning a new way of celebration. One that comes in celebrating inchstones (ie. learning how to push up her glasses when they slip down her nose, being able to sit in a chair without collapsing forward, gaining neck strength to hold her head up when she is tired) and savoring the present moment.   

In her book, “What If It’s Wonderful?” Nicole Zasowski writes, “Savoring requires that we regard the moment we are living in as more important than anything else we could be doing at that time, trusting that the purpose, progress and even the point is often found in the pause and not always in something we accomplish.” What about you? What do you desire to savor and celebrate today? 

Finley is so worth celebrating. She is full of life and laughter and love. She is on her own timeline, a truth that has been, and is still difficult for me to get my head and heart around. I stumble through attempting to learn a new way of celebrating. Instead of waiting for something to be done or accomplished, what if we celebrate the daily gift of being together, laughter, smiles, gifts of relationships, gifts of creation-the sound of the rain, sunsets, fireflies on a warm summer day, sitting around the fire pit with friends or family, beholding an old tree, or stopping to savor the way sunlight trickles through the branches of the trees, splashing sunlight over the grass beneath.  It is hard, so so hard to learn how to stop and savor, but through it all we can be confident that  God is doing a deep work in our hearts, redefining celebration and teaching us to trust him through it all. We cannot rewrite what has been written and we cannot write the future. But, we can choose to savor today, we can choose to lean into the pause.  “Being confident of this, that he who began a good work in (us) will carry it on to completion until the day of Christ Jesus.” Philippians 1:6

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