Post by Alisa Hutton, whose words can be found at Dusted Words.
This is Noah, he has autism. You respond “that must be so hard”. I want to cry and tell you how hard it truly is. I want to tell you how alone I feel sometimes. I want you to know we need more support and how tired I am. My deepest fear that I am not sure that I can do this alone. I don’t say this though. I smile, I say it is OK.
Sometimes hard days turn in to hard weeks and then months. Eventually, I can’t remember when it wasn’t hard. There are moments when the hard feels like it will never stop. I sit in silence knowing I have to be consistent and patient. I want a break. I won’t get that break. I want to understand what is going on for him so I can fix it. I question my ability. I do what I know best. I love him. I feel guilty because I know it is more difficult for him. I feel selfish for thinking about myself.
I am isolated. Some days I wonder if it is best, if it keeps me better focused to be alone. It can be lonely, lonely feels worse than isolation. As if you are invisible, I struggle with it.
I worry. I wake up at 3am gasping for air. What will happen to him when I die? Who will care for him? Who is going to love him if I get sick? How am I going to make enough money to take care of him for the rest of his life? The worry doesn’t stop.
I stress. It swallows me. I know what it is doing to my body. My chest is tight and hurts. I ignore it. I look in the mirror, I look tired. I am aging quickly. I need more breaks and help. I won’t get them. I laugh and joke about it all but I don’t actually think it is funny. It scares me. I know it is a matter of time before my stress becomes sickness.
You asked me if it was hard. The truth of the matter is it is the hardest thing I have ever done. It is the greatest gift I have ever been given. This beautiful little soul who I have the honour to call son fills my heart every day in ways that I didn’t even know were possible. He is pure love, his name is Noah and he has autism.