Nobody Ever Told Me: Navigating Life with a ‘Forever Child

Nobody ever told me that when I brought children into this world that there was a possibility that I may have a “forever child”.

Of course, all three of my children are forever mine. However, one will forever be with me until I can no longer care for her on my own. 

Nobody ever told me I would teach my child to talk and that I would hear those words come from her early.

 I would see small gestures come from her tiny hands to accompany those words…only to have it all disappear before my eyes and locked tightly inside of her with no explanation as to why. 

Her words were replaced with shrieks, hums, and crying. Gestures became stimming hands relentlessly, banging her head on the closest hardest surface, and deep constant frustration. 

Nobody ever told me my job as a Mom would become about not only teaching her, but teaching myself and the world around her about differences, patience, and inclusion.

Nobody ever told me my life would become all about the safety and comfort of my child.

That I would have to become fluent in non verbal communication consisting of behaviors, scripting videos, requests, and body language.

Nobody ever told me I would have to teach myself everything there is to know about sensory regulation. That my child’s entire quality of life would be centered around my ability to help her with sensory regulation and that I would have to teach her the skills to do it for herself during her hardest daily moments.

Nobody ever told me that I would fear my own death frequently, not for myself, but for my child. 

Who would love and care for her in the same way I do? Without me, Would she be cared for with patience and dignity? Would she be happy? Would she feel loved? Would she be safe? These questions haunt me daily and they always will.

Nobody ever told me that my other two children would have to make big sacrifices to accommodate their sibling so she could feel safe, comfort, and peace. They continue to make those sacrifices out of kindness, love, and open hearts.

Nobody ever told me that I would find such joy and pleasure in the smallest tasks being completed, hearing words being spoken, and finally getting hugs from a child that couldn’t tolerate touching not so long ago.

Nobody ever told me that my child would teach me that true beauty and peace lies within the simple things. Light patterns on a wall, sand sifting between your fingers, the weightlessness of floating in a pool, and rocking back and forth to the music playing in your ears. 

Nobody ever told me that there would be huge growth in the hardest moments of our lives. That all the struggles and beauty of our world would forever be intertwined.