A Day In My Life

On the outside, I look as though I have this life down pat. Honestly, I have no idea what I am doing. I wake up every day not knowing what the day will hold for me in Paxton’s world. When I tell people that he is autistic, they automatically say, “Oh gosh, I am so sorry.” That reaction really pisses me off. My baby is not sick. He is not dying. I don’t tell you so you will feel sorry for me or him. I share that with you, so you know and understand that my baby communicates differently than you and I.

I have never heard my baby say, “I love you,” and gosh, I want that so badly. Every assessment, or IEP meeting, I am so stressed that I am physically sick, or I have an anxiety attack.

I remember before any assessments, I was okay, like I had accepted the diagnosis. I knew I just needed to continue to advocate for him. I also needed to educate myself on Autism. Then, all would be well in the world.

I was so wrong, Paxton had his first assessment at the local Pre-K near our home. After a few weeks, we all met on Zoom and went over the results. I was devastated to see the results; actually, seeing it all on paper was gut-wrenching. I have written many posts on Facebook about this journey. But I have never personally shared how lonely this journey has been.

I have never wanted anyone to feel bad for me. My life is the total opposite of terrible. Paxton is non-verbal, but he shows his love in different ways. He hugs me so tightly, gives me kisses, and holds my hand. He really is so loving. But some days are very challenging, and I end up crying in the shower.

God makes no mistakes, I believe. I try not to question him. Still, if I am being truthful, I do question him. People have always told me how strong I am. They admire that about me. Yet, that is far from the truth.

A day in my life is full of emotions, mainly stressing over the future. All the what-ifs. I never want Paxton to feel as if he is different than anyone else, even though I know he is. This world is cruel. Every waking moment of my life, I think about new ways to protect him. I strive to be his voice. I seek ways to never let him down. At night, I lay there next to him. I watch him sleep and think to myself, ‘No matter the struggles and hard days, I am so blessed.’

In his eyes, I am his hero, but honestly, he is mine. He wakes up every morning happy and smiling. The first thing he will do is hug me and give me a kiss on the cheek. We snuggle every morning on the couch before I start my day.

We are in this together. No matter what a day in my life looks like, I refuse to give up. I will do whatever it takes for Paxton to become his best self.