Unpacking Special Needs Feelings

I came to an unmarked box and peeked inside. It should have been relatively uneventful… heaps of books.

Books that I didn’t realize I even owned. I rummaged feverishly as if I might find a good late night read until I stumbled upon the book

The book that propelled me back in time to days when my child was fighting for his life.

How dare it? How could it? I was over these feelings, wasn’t I? But I wasn’t. All I had done is pack those feelings away.

It was titled Learning to When Courage Lies in Letting Go, by Deborah L. Davis.

As I sat in a hospital rocking chair with tears streaming down my face a hospital social worker placed it in my hands.  I found her timing cruel and insensitive which only intensified the stabbing in my heart and the constant pounding my head felt as a result of the pressure from all my tears.

I was fighting for his life. I wasn’t about to let go. The book supports ethical and humane decision making.

The social worker sat across from me, as my hands braced to hold my face up.

Clips of what she said still haunt me “You’re young enough to start over.”  “He’ll feel no pain if you let him go and withdraw food.”  “He won’t remember.”

I felt tremendous sickness overcome my body as if I had been infected with poison. But it was simply that I was rejecting with every fiber of my being any idea of giving up hope.

I’m sure the book has a purpose (maybe?) and likewise, I’m sure that social worker was coached into just “doing her job” even if it wasn’t the appropriate action for a grieving and distraught new mother.

I should have burned that book.

Really, I probably still should. But I think I held onto it because it was a piece of our story – my son’s story.

But even if that book didn’t exist and I had tossed it years ago, it would have just been something else to stir up memories and feelings that we think as special needs parents we’ve conquered and moved past.

It could be a song, a familiar scent even associated with those early hospital days – an outfit you saved in a box.

Lots of things can open up that boxed place in your heart that you push all those feelings to the bottom just so you can move forward. You might feel it is a sign that you just haven’t healed.

But it’s not about ever healing. It’s simply a coping mechanism that we all do to some degree.

Unpacking special needs feelings from time to time may even in some odd way be beneficial.

It gives us an opportunity to reflect on how far we’ve come, and appreciate all that has gotten us to where we are today.

It serves as gentle reminders of the fighters we all are.

I have so much power now over that book that I held in my hands than I did when it was first placed in them.

I was able to feel it as my personal victory over that book.

It’s okay to unpack those feelings, even if that means it temporarily catches you off guard and you have a mad, messy good cry.

It helps you refocus and move forward stronger than you were before.

 

About Stacy Warden

Author of Noah's Miracle blog. Noah had suffered "global damage" to his brain. As a result the prognosis was grim. They said Noah would mostly likely never walk, talk, eat or even breathe on his own.

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