Having your child diagnosed on the autism spectrum subsequently changes a mother. Words simply cannot explain the changes to the body, mind and soul of a woman who’s handed something akin to a death knell about their child. The baby they prayed for, dreamt about and waited for over 5 long years. Then, two years of life with the little guy, only to be told he will never actually interact WITH you, won’t speak, we can’t explain what happened, but get ready to put him away – away to an institution and please, try to get on with your life lady.
Stunned stupid? Yes, with a death ray that could feasibly destroy any planet of your choosing.
Not taking this laying down, in those early days before we knew what really happened to our son, my time was filled with research, frustration, panic, and according to some, a manic pursuit of wellness for my son. These things strain relationships, family, friendships, and marriages – nothing is immune from the fallout surrounding an Autism diagnosis.
The summer of 2000, my husband was invited to tour China as a Fulbright Scholar. What an amazing compliment and honor for someone who deserved so much more from life than he was so urgently experiencing. Besides, we needed a break. We needed to know we could make it to the finish line, together. Not pleasant, but please remember, 99% of all parents with a disabled child divorce over the details of the disability. Were we going to jump over the 99% to stay in the light, the 1% who trudge through, together?
He packed his bag, jumped on a plane, and was only able to call one time while he was away in the exotic far east.
The boys and I were really alone now. My oldest son, the one with Autism, had had his tonsils out the week before. It wasn’t going well for him. I needed to call into work the next week to stay home. My boss was ticked, I was sorry – but my son, he was still bleeding from surgery.
The lawn? My brother-in-law mowed once, I paid the neighbor kid the next time and even managed it myself another time. I was exhausted. Exhausted to a point I had never known before. Clinically exhausted……
But who really cared? My mother – the toughest woman in my world, was sick. She had learned just a couple of weeks before China that she had a very rare blood/immune system disease. Of course, she won the other shitty lottery for our family. Four people in the US have this disease – and just where did she find this ticket? Seriously, where in the world does this kind of thing come from?
My mother is a brand of her own. She was suffering herself. She loves my kids – and me too. It had to have been a personal brand of hell to know your daughter needed you more than ever this time….but she literally couldn’t darken the door of my house…because she could die from the exposure. Six weeks of her own house arrest to sort out her cancer. God, the irony….it really is endless.
My Father, a light in my life, brought the food to me. Oh ya, Mom is an excellent cook. Dad delivered delicious meals, seasoned with my Mothers love, spiced with the words she couldn’t bring herself to say – compete with salt, pepper and a napkin. I dined like royalty – from the hand of my unwell Mother…doing what she could to help her own daughter, in the depths of her own personal hell, fighting for her own life.
Upon entering the living room, after his tour of China, was my husband. We knew were the only two people on this planet capable of taking on our family’s needs. That was the best decision ever made by both of us.
Two weeks after my husbands return, I was diagnosed with Multiple Sclerosis and a raging case of Pleurisy. This explained my clinical exhaustion. I had found my bottom and was ready to leave it all behind, heaving upwards and out of the rabbit hole we’d all fallen into.
Bless my Mother. The White Grandma. She prepared me for this moment. I regained my health, to surge forward. And my Mom? She continued supporting my boys with whatever it takes to get back to “normal”. Now, She’s trudging along, changing history with her stubborn need to dictate to my Dad and the rest of her family. Give ’em hell, Mom. Give them all Hell.
~ Wendy Frye
Necessity… the mother of invention.