Dear Autism

Dear Autism,

There are so many things I want to tell you, I want to ask you. I want to tell you how much I hate you. Yet, thank you at the same time for changing my outlook on so many things in life. Strange, I know. I want to ask you, “why us?” – Or, “what did I do wrong?”. Sometimes, I have so many thoughts, but I’m so caught up in trying to stay above water and not drown – I don’t have the strength to tell you all of the things I want to. 

Autism, I want you to know, Sometimes things and people come into your life at such a speed you don’t even have time to absorb it all. 

You did that to me, Autism. You came into my world and while I feel like it took an eternity for you to earn your place in my life, some days it’s all a blur and I wonder what the heck happened?

Autism, you see, we were fine. We were fine with our little family of five. My perfect family. 

Autism, my introduction to parenting wasn’t easy. My first daughter and sweet middle boy, when they were born, we fought for them. Their blood was sick, they were sick. To this day, I mourn the loss of their “normal” infancy. I grieve and hurt and recall every lab, every med, every hospitalization, every day laying in the clinic with lines and infusions and blood transfusions. I still tear up thinking about weeping on the bathroom floor of the hospital, pleading with God to test me – test my faith – but please, not through my kids. Anything but my kids. 

Then, my third and perfect boy comes. The fear I lived with everyday during my pregnancy is indescribable. The guilt. The guilt that I may bring a third baby into this world, just to be sick. But he wasn’t. His blood was pure. I’ll never forget the words of the doctor, “you may have dodged a bullet. You can take your healthy baby boy home, he does not have anemia.” He was my perfect baby. He was the one who let me breath. He was the one who let me experience “normal” infancy. 

Then you came around Autism. Maybe you were always there? Maybe you snuck in later? Maybe I was so caught up in rejoicing my perfect baby, I was blinded by you showing signs all along. Maybe I was in denial? Whichever it was, you knew – eventually you’d win all of the attention. 

Autism, you stole my perfect baby from me. You stole my hugs and my kisses. You stole my experiences and pleasure in family outings. You stole my time. You stole my silence. You stole my happiness and my joy. You filled our home with screaming. With meltdowns. With strangers telling us what to do, and how to raise my perfect boy. You cost us a small fortune in therapy bills and medical bills that we want to spend on vacations or babysitters for date nights. You stole our date nights because of the anxiety and fear we have leaving our perfect boy knowing YOU are around. You steal daily time with our other kids because you are a constant battle our ENTIRE FAMILY has to fight. Damn you Autism. You steal my kid’s moments. The moments they don’t even know they are missing because you came into our lives and they just think “this misery is normal”. You brought stress into our lives. You brought pain into our hearts. You instilled a constant fear of the future. 

 I will speak about you and I will raise awareness about you. I will talk about you – what you are and what you’re not, but I will never fully “welcome” you. I hate that I feel that way, but I didn’t want you. I didn’t ask for you. 

Autism, I love my son. I love my perfect son. I love his giggles. I love his quirky stories. I love his excitement over simple things. I love how he’s honest and always says what’s on his mind and speaks it like it is. I love that while I would give anything in the world for his hugs and kisses – that I can still capture his kisses when he blows them to me and I can forever hold them in my pocket and close to my heart. I love how he has taught me to be strong. I love how he has taught me that it is okay to be weak too sometimes. 

Autism, I love my son I don’t love you. You, don’t define my son. Autism, You are NOT my son, my son is Benjamin. My perfect boy. 

 

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