Piece by piece, I felt my aching heart shatter into a million pieces. Each piece slowly tore away until my heart, which was once whole and perfect, crumbled into a million pieces. Little did I know that it would be slowly put back together, but in a much different way than before.
“Your child has autism.” It rolled off the doctor’s tongue as if it was nothing. It came out of her mouth so effortlessly and without any compassion. I sat there, feeling my heart start to break, piece by piece. Little did I know then that it was just the beginning of my broken heart.
As time went on, each piece disentangled more and more. The therapy schedule filled up and the life I knew before was no more.
My phone calls for catching up with friends turned into phone calls to fight insurance companies. My relationships with friends and family changed. I no longer could be the friend I wanted to be. I couldn’t do shopping trips away from my child. I couldn’t have a girl’s night out. It simply couldn’t happen. I had a child who needed me 24/7 and no one was pounding on my door, begging to babysit.
The anticipation as a first-time mother to hear my firstborn say, “Mommy, I love you” never came.
Trips to the store with my child simply couldn’t happen.
Normal, day-to-day living was hard work and exhausting. Nothing was easy. Brushing teeth, putting on clothes, and potty training were a far cry from what typical families experience.
Shopping for age-appropriate toys doesn’t happen. A simple look in the eye from my son may happen once a month, if I am lucky.
A full night’s rest was no more. We don’t know if and when we will sleep. Slowly, as life changed to adapt to our new life with autism, my heart just kept breaking, piece by piece.
The stages of grief came and they still happen daily. The rollercoaster life of autism was our new normal and it was the hardest thing that I have ever done in my life.
I soon found myself wondering the dreaded question: “What will happen to my child when I am gone?” I worry and ask myself this every single day.
Again, each day the pieces fell from my heart. It’s a hard life, but even though my heart broke piece by piece, I finally found the way to put it back together.
Slowly, over time, acceptance entered my life and I started to put the pieces back together.
As hard as it is some days, I started focusing on the positives. I started to see the joy in the unexpected. I soon saw the beauty. On some days, it is hard to find the beauty in severe autism, but there is always something even if it is a small thing. I long for the life I had before every day–that never goes away. However, I do enjoy the beauty of my new life.
Even though I have worked through and put the pieces of my heart back together, it will never be like it was before. I smile and laugh behind the scars that my heart has. The scars hurt and they are wounds from the life I envisioned for my child; a life without any trials. However, piece by piece, I put my heart back together and learned how to work though the scars. That is simply what we have to do.
Autism parents don’t have a choice. Our hearts breaks into a million pieces when our child is diagnosed and slowly, over time, the pieces are put back together, but in a different way than before. None of our closest family and friends could ever begin to fathom what we went through with each piece that was torn off. The only ones that know that feeling are other autism parents.
As time goes on, I hope you can enjoy how your new heart is put together, piece by piece.