They are just laying there against the fireplace…..the crutches. I walked by them as I was tidying up and it caused me to pause. I never thought I’d be cleaning up my living room and stepping over such strange things. It’s part of our family’s journey. Sometimes we need crutches in our house. Its part of a new normal that I don’t understand.
This week I finally did something I’d been avoiding all year…..I wrote the school to start the accommodations process for the Boy for next year. I told myself I was waiting until I knew more before I took this official step. Certainly so we could understand the scope of his condition perhaps, and maybe it was naive but even to possibly name it and then make the necessary steps to “fix it.” I honestly think the truth is…..I just wasn’t ready for the conversation. All the emotions of the year were so raw and literally bubbling up inside of me. I do not think they would have allowed me to be as constructive as I would have needed to be in those panel discussions. Whatever my reasons, realized or not….I think it was best that I had waited.
Some stories get closure and happy resolutions…..sadly that’s not how this story gets to be told. I never got an answer to why? Life has asked me to accept something I cannot name, and asked me to fight a battle I do not even understand. We are not being forced to move beyond meetings and casual conversations, and press into real acceptance which comes with treatment and physical therapies.
On top of this moment of acceptance, this week also holds our final specialist appointment….Genetics. It’s such a super fun place to be that they have both a doctor and a councellor in the room with you. Super duper excited about that. I’m so mixed. With each passing appointment that brought us no answer I would say….but maybe the next one. The list grew shorter and now we are at the last appointment…..so what comes after? I don’t know, and that’s a scary place to be because we’ve reached the end of tangible hope.
I actually had a student therapist in the room at one of the previous appointments. She was shadowing the doctor, and she had the perceived emotional depth of a gnat. I wasn’t impressed Ill be honest. She in fact did the opposite of help my emotions because now I felt like I had two non empathetic people listening to me tell my most painful story to date, and giving me their generic “lets do these tests” list.
When this is all said and done maybe I need to complete my psychology degree and work with families just like mine. This is a special kind of pain…..loss, betrayal, hurt….the child you once knew is gone…..and yet still with you. Its a strange place.
You look them in the face every night and kiss their sweet cheeks…..and yet grieve as if you’ve lost them. It’s an emotional fissure. I held my son at 10 pm last night. He was a puddle of tears writhing in pain…..and I can’t take it away from him. I breaks my heart.
I would give anything to absorb his pain…..to make a deal with the underworld to spare him from this path…..but there is no Hades that I could plunge into the seas of Mt Olympus and ask for a conference with. There is no mythological woman that I can search the darkest corners of the earth to bring back and provide me with a spell for restoration.
When Pandora opened her box…..everything good and bad came forth. What had she done?!? I myself know the unleashing of opening a Pandora’s box. I feel the weight of it daily. The lid to the mythological box was slammed back shut capturing one singular emotion inside……HOPE. All the evil and pain in the world is real but so is hope…..and it’s the one thing that was not lost to Pandora in her story…..and I pray it’s the one thing that’s not lost to me in mine.
My mother once said to me, “I know at the end of all of this your son will be stronger…because he has you, but I worry what you will become?” Those words still haunt me. Can you fight so hard that you lose yourself? Can you literally ring out every ounce of emotional resolve that you possess in one body…ultimately surviving tragedy, but becoming a shell of your former self in the aftermath? I’m afraid this is exactly what can happen in some cases. Grief is powerful.
But then…..as I walked by the crutches this morning I stepped back. There on the same mantel…. the word JOY sat behind them. The dichotomy of emotions in this simple photo reflects my daily truth now. How will I navigate a life touched by pain with joy?? It’s a question pressed on my mind this week, but its true for all parents in our journey of advocacy for our kids. No matter the path your family has been called to walk know there is always one thing that can never be taken, and should be held close…..hope…and we have Pandora to thank for that.
Summer Smith is a speaker, writer, and motherhood blogger. She and her family are currently navigating the suburbs of Northern Virginia. As the mother to four young children, Summer maintains her sanity thanks to her sense of humor, copious amounts of coffee, and Amazon Prime. Maya Angelou once said, when reflecting on her childhood, that her mother left an impression like technicolor stars in the midnight sky. Influenced by these words, Summer blogs at her website Motherhood in Technicolor, and can also be found on her Motherhood in Technicolor Facebook page.