I was brought to sobbing tears this evening on my commute home.

As I was exiting the subway, a little girl (likely around L’s age) and her dad were in front of me on the stairwell. The little girl was singing as she was effortlessly climbing the stairs while holding her dad’s hands. Once they got to the top of the stairs, she turned to her father and said, “Daddy, aren’t you proud of me? I made up that song all by myself!”

It was a sweet, intimate moment that people in crowded cities are privy to overhearing.

At that point, all I wanted to do was get home after a long day at the office.

But there I was, inadvertently eavesdropping on  a ‘typical’ exchange between a daughter and her father. And it flooded me with grief, and jealousy. Not about the father part – that wasn’t even a thought. But about this little girl’s ability to sing and make up lyrics and walk up the stairs. And talk.

I want my child to talk. And to walk up stairs effortlessly. And to sing. And to verbalize her silliness. And to not have to work so hard at everything.

But until that happens, I have to continue working on managing this grief that I carry around with me. It’s always there. And most times, I’m in a strong enough space to not let it engulf me. Lately I’ve been finding this harder to manage. Maybe because sleep has become elusive in our home again or because we spent the weekend with neurotypical kids her age and younger who were doing things I only dream about for L.

Living in a state of grief is not an option for me.  Who wants to be depressed all the time?  Especially when there is so much to be grateful for.  I’m so lucky that my sweet L is healthy and ambulatory and is learning how to communicate through nonverbal means.  So I will follow her lead – when I fall, I will climb my way up and be proud that I made it back to standing.


5 thoughts on “Exhaustion

  1. There are times when a little perspective is in order and others when a slap upside the head is all that will do. Thank you for both.

  2. Wish I could be there to give you a hug in person instead of sending virtual one! Thinking of you both and sending love.

  3. Big hugs. And thank you for sharing this; it’s such a huge part of the special needs parenting experience. I try to keep in mind that comparison is the thief of joy but this is SO hard to live day-to-day, especially under the weight of exhaustion, and even more challenging in a crowded city full of precocious tots. Be kind to yourself and remember that the joy you DO get to live with L in your better moments is incomparable, and perfect. You’re doing a great job, mama!

  4. Heartbreaking post. I know that the days that you appreciate what Lily CAN do are greater than those sobbing days.

  5. To all of you beautiful people who replied here, or emailed me separately – THANK YOU. Sharing this journey with you helps me in so many ways, one of which is to remind myself how lucky I am to know such amazing and supportive people.

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