Raising a child with developmental and physical disabilities has given me a greater appreciation for all things. 

She has given me the power to be an optimist.  Most days I’m able to tackle the challenging and hectic schedule that is our life and find many beautiful moments woven in.  

With her happy smile, she helps me see past all things difficult and reminds me how much there is to be thankful for.

However, there is an unescapable sadness that still manages to creep up on me from time to time, when I least expect it.

The sadness and grief are cyclical; periodically recurring, no matter how positive our current situation may be.

Things may be going perfectly fine and life can be magnificent, until one little catalyst can turn a good day upside down.

At a recent visit to a local park with my family, my son played cheerfully while I sat my daughter in the sand to feel the texture.  As this didn’t suit her, she tried out the accessible swing and then the slide, with my help.  None of these activities met her standards of a good time!  

Sitting her back in her wheelchair, she was finally contented.  She was back in her comfort zone.  Then, out of nowhere, a pang of grief snuck up on me with one simple question from a little girl.

“Can she get out of that chair and come play with me?”  

And there it was.  The familiar lump that quickly forms in my throat when I want to cry, but I desperately try to choke it back.  Like a brick to the forehead, the sadness hit me, and it hit me hard.  

A simple response of, “I’m sorry; she can’t,” was all I was able to manage.  Her mother was beside me and quickly told her to run along and play.  The day was bright, and there were kids laughing, running and digging in the sand.  There were squeals of cheer all around us as kids were playing and enjoying the freedom of being at the park.  

All but my daughter.  She was only a spectator, merely observing the sights and sounds around her.  

A sweet child wanting to incorporate her in the fun normally would have delighted me; someone wanting to include her. This particular day at the park, it didn’t.  I felt the opposite of delighted…I felt completely dismayed.  

While I truly appreciated her wanting to involve my daughter in play, all I could do was feel the heavy inequity – the unfairness of the situation.  

The fact that she can’t get out of her chair and join in hurt me to my core.  

She deserves to be able to run and jump and climb the steps to the slide.  She deserves to be part of those precious childhood moments other children get to experience.  

Instead of enjoying this sunny afternoon at the park, instead of happily watching my son on the monkey bars having the time of his life, all I wanted to do was dig myself a giant hole in the sand.  

Moments like this will always be a part of our life.

I am certain that they will come and that they will pass.  

As waves crashing onto a seashore, the sadness will roll in from time to time.  

There is no way around it. On a positive note, the waves recede a lot faster now than they did in our journey’s beginning. The sneaky sadness that found me on that day at the park diminished as we left to go have ice cream.

She loves ice cream and I love seeing the joy on her face that it brings her.  In beautiful moments like that, I again find gratitude.  

I appreciate this beautiful daughter of mine and all the wonderful things she is.  

SHE is reason enough to dig myself back out of the sand.

 

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