Do you ever feel like the life you are living is not really your life? Perhaps a faux landscape and and though you do your best to participate, you can not be sure if this is actually your life or that you are an outsider, watching someone else’s life. The illness and death of my brother provoked that response to reality though somehow that seemed a plausible, even natural reaction. The distant snapshots I take today are only of myself and my son, Amos. We both are very much alive and well, yet my mind still has not fully realized that I have a special needs child.

In most moments, I am great and he is great and our family is great. It’s especially easy when it’s just us around. We all accept him for himself as all families do with their precious members. My mind doesn’t blink in those moments and it is so freeing to not worry, not analyze the happenings in the environment around us, to just be ourselves. I can be wife, mom of three fairly typical children and one special needs child without batting an eye. It’s easy peasy when safe in our family cocoon.

It’s the new, the unpredictable, the social settings with others (there are so many), and even when I think I’m ready for real life, I never am. I never am. Today we went to the ribbon cutting of an amazing playground accessible for kids with special needs and their siblings or typically developing children. It is an amazing place, beautiful and functional, fun and beyond anything our small community has ever had available. My heart smiled as Amos flew up ramps and down interesting sensory slides. The trouble is that Amos needs that playground and that acknowledgement is not quite so easy to do.

I wish I knew why. I wish I knew why my mind won’t obey my heart. I wish my steady trust and faith would quell the tears that so often spring to my eyes and lodge in my throat. I love my precious son and for him, I would move mountains but there are none to move. The abyss of the unknown looms large on the horizon and I am left to embrace the life he has been given and that means being thankful for a playground that will benefit him. I chose joy in that moment, stifled the unshed tears, chased him up ramps, flew together down the slide and pushed him on the zip line.

Later, when things were quiet, I shed those tears that could wait and I allowed the grief to wash over me for the life I never knew would be ours. Like the rains that come and feed the crops, my tears fell and healed my soul. I shall not let them get the best of me or steal my joy in the moment. I will release them to the earth as long as they beckon and then, I will smile when the sun comes out again. It always does, you know.

Share this post: