Autism can be hard to understand especially for a toddler. All my son wants is just a relationship with his older brother, who up until a few months ago wanted nothing to do with him. Two boys with completely different personalities: Nicholas who is laid back, keeps to himself, quiet (most of the time), and has autism; and Daniel who is outgoing, social, independent, strong willed, and most of all, persistent. For a long time I didn’t know if my boys would have a good relationship with each other. I…
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A few years ago, I was scrolling through a Facebook group called “Mom’s of Trach Babies” as I often did, looking for suggestions or tips for taking care of my sweet son Jacob and his tracheostomy. Jacob had a rare neurological genetic disorder and he depended on us for everything. I feel like there was a point where it would have sounded silly that we found better information from a Facebook group than from some of the doctors we encountered, but now, its fairly common to find valuable and needed…
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Twenty months old. That’s how old you were when we welcomed your sister into our family. You wouldn’t go near her at first, and even now you rarely act like you notice her. Leading up to her arrival everyone would ask if you were excited to have a baby sister. They would ask if you showed interest in my growing belly. You didn’t notice it one bit. It didn’t phase you even a little. They would talk about how fun it would be to have two so close in age.…
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I cried when you were diagnosed. I cried because I thought I did something to cause it. I cried because I wondered if I would ever hear your voice. I cried because I wanted you to live the childhood I imagined for you. I cried because I wanted you to have a typical relationship with your sibling. I cried because I worried that you wouldn’t have the capacity to learn. I cried because I worried that you wouldn’t have the capacity to love or be loved. I cried because you…
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Being a parent is something I always dreamed of. Being a parent meant raising my kids to be great people, to teach them values like kindness and honesty, and hopefully send them into the world as adults who could make a life for themselves. When I was pregnant I imagined their milestones in front of us. Finishing primary and secondary school, hopefully onto college and graduation and lastly a career that they loved and that both challenged and fulfilled them. In the same breath I imagined myself and Brian as…
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We had a tough morning over here. The details don’t matter I guess but after I left him at school, I felt like I had run a marathon. I felt a little bruised…my body, my heart and my ego. I felt sad for him. I hate that he can’t communicate. I felt confused as his mother, and even a little depleted. I felt like I wasn’t enough. Because I don’t have the answers. I don’t know why or even how to fix it. I do my very best to always…
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Imagine something hurts. But you can’t tell anyone. You want too. You try even. But it comes out in different ways. Ways that people don’t understand. You try to get attention. But they won’t listen. You scream. You hit your head. Because that’s where the pain is. The screaming makes people frustrated. The hitting makes people stare. You drop to the ground because you are exhausted. You roll. You try to get the pain out of your head by pressing your ear to the cold, cool ground. People stare more.…
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One of the most amazing things that has happened in the last few months is our son’s desire to leave our home. To go places. To try things. And to communicate about it. We never went anywhere for years. Seven years to be exact. We were always home. Safely inside triple locked doors and fences. We went to therapy, the occasional doctor’s trip, and to see grandparents but that was it. When we did go somewhere we always had to drive the same route. Do the same things. See the…
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If I could go back in time, 6 years ago, and tell myself one thing and one thing only…it would be… Let me paint the picture for you first. I was just given a lifelong diagnosis for my child but no direction on how to help him. I was a scared mama. I was 28. This was my first baby. We lived in rural Minnesota and there was no help. No other kids like our son. I wasn’t hearing positive things either. Instead I was told things like, he will…
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I’m the kind of person who is always searching for some big cosmic reason for things. I search for answers. Signs. I think way too much. I wonder why and how. I wonder how it all ends. As I get older, I’m learning that maybe it isn’t so much about understanding why. Maybe it’s about becoming the best version of yourself so you can become the best parent, advocate, protector, and teacher for your child. Maybe it’s about showing the world how amazing life can be when it turns out…
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