It has been one of those weeks. The kind that makes me consider investing in a larger wine fridge. But I am rolling with it because that is what I have to do.
Having a child with a disability does funny things to my heart. Extreme love and heartache have been known to co-exist all at once or pass by one another in fleeting moments of profound pride or sadness. I am still learning how to balance that; how to let that all happen as it happens. How to let my heart and my mind be okay with it when it does.
But there are periods of time where it stings. Times that my heart isn’t capable of balancing or keeping it in. Seeing how the disability regulates my child’s ability to grow, learn and succeed; and knowing that there is nothing I can do to make it go away, but wishing so badly that I could if it meant that she could do something new with ease just once.
We embrace all of her successes and all that she overcomes. Each of her milestones are important–like any child’s–so we celebrate accordingly, and she knows just how proud of her we are. However with each newly accomplished skill comes the regression of a previously learned one. For her this is typical, but even after four years, it gets me every single time. And I always tearfully wonder, “…will it come back? Will she ever know that skill again? Will she have to work just as hard to find it once more? Is it gone forever? Did I fail her?”
She works so hard to meet her goals. We work hard with her as well. I take it personally as I watch one her skills gradually slip away for an unknown amount of time. Sometimes taking steps back is necessary–maybe even good, and I eventually realize that; but in those moments, the setbacks feel permanent–like a direct reflection of my parenting. And I know she will get there. She always does. She bounces back when she is ready.
That is easy to forget. I remind myself that this is all part of it. She is loved and cared for. She is learning and growing at a pace that suits her well…and us, too.
Be patient mama. Don’t let worries take space in your heart.
There are mountains and there are molehills. We get by easiest when we can identify their differences, and figure out a way to get over each of them. It is knowing what to worry about and when–or not. It is remembering where she has been and where she has left to go.
The molehills prepare us for our trips up each mountain. Sometimes on top of those peaks, the tears fall; but on the way down I know we are getting somewhere. We are headed to the next great adventure. And we know that down the road we will make another tearful trek uphill, so we savor every sweet moment along the way.