Without a Crystal Ball

Our Journey through Chronic Illness & Autism


Ask anyone that knows me personally, and most will tell you I’m a driven and motivated woman. I was the younger sister to a very accomplished brother. Not only did he excel at sports and academics, but he was well liked by everyone who knew him. As I child I spent most of my time tying to keep pace with what he was accomplishing, and much of that drive landed me in sales as an adult. My career has been successful. I’ve been working in Sales for more than 15 years, and I’ve been able to carve out a nice living and life for myself and family. Motherhood was never really on my radar. Even though my friends said I was nurturing and kind, I never imagined being a mom. I envisioned being a career woman, and I was going to climb that corporate ladder.

When I met Todd in my early 30s, I wasn’t even sure I wanted to be a wife. He changed all of that for me. I found a man that was kind, considerate, funny, charming and willing to go toe to toe with me on anything we discussed. His brain moved fast, and his vocabulary was broader than mine. The intellect he had was hard to keep up with at times, and I fell deeply in love. He told me he wanted to be a dad very early on, and I just sort of went with it. After we were married, I debated back and forth about whether I would be a mom. Then suddenly I woke up and I wasn’t feeling well. I went to the store only to eliminate the possibility of being pregnant. I held the stick with my hand almost shaking. I knew I was pregnant. When I saw the positive, I was scared but so excited to be a mom.

Since I’ve been so motivated and driven, I assumed I would excel as a parent. I figured we would have the typical life, and I assumed my child would meet milestones fast and eagerly. Then I had a child that was born premature, and has been diagnosed with several life threatening diseases. Von has always had his own timeline to do everything. We know now, after 3 years, that his brain does not process things the way my brain does. It takes him longer to reach goals and to figure out how to make his body and mind work together. It’s been hard for me as his parent to watch him struggle. There are times he’s so frustrated because his mind and body simply aren’t cooperating.

Early on I would watch and compare him to everyone around him. I would forget the amazing things he has been through. It was almost like I didn’t want to remember he had been on life support, or I didn’t want to admit he had diseases that made his body fight harder to live. When I looked at him, I didn’t see a boy that was sick, I just saw my son. He was this tiny human that wanted so badly to be like the kids around him, but he was trapped in his own mind. His brain was sending the messages, and his body did not respond.  I would get sad when I saw kids passing him up in every developmental area. Tears would stream down my face when I thought about how much he had to fight to just be a child. It didn’t seem fair that he had to work so much harder to meet every single milestone.

Last summer it hit me like a ton of bricks. I have been projecting my wants and needs for Von on to him. I have not been enjoying and watching Von simply be Von. This is his journey not mine. His journey in life has included things I’ve never encountered. There are 10 doctors, therapists, and nurses that all have to help him learn. We have to show him over and over what to do, and eventually through the training his brain is able to connect the dots. I realized this wasn’t a sprint, and that just because some children meet milestones early doesn’t mean that all will. I stopped comparing Von to every child around him, and I realized he was uniquely Von. Suddenly I found joy again in being a mom. I was able to marvel at the fact that he sat on life support and almost died, and now three years later he is walking, talking and learning his colors and numbers. He has a determination to learn things around him, and he wants to engage with things within the world. His heart is tender and loving. Every day he gently pets and hugs our cats, and he will stroke my arm and say, “Mommy, soft.” This is his journey, this is his story, and it’s not mine to determine.

He’s proven over and over that he will accomplish everything he sets his mind to do. We just need to have patience that he will get there. Today I’m no longer waiting for him to get it, but each day when he does something new I celebrate. I get excited when he wants to play pretend, or if he asks to play hide and seek. I clap when he tries to feed himself but still doesn’t have coordination to make it work. We aren’t on my time, but we are on his time and taking it at his pace. Sure he’s behind his peers, but of course he would be! His peers haven’t been sitting in a hospital bed fighting to survive, and I need to remember this is will be a long journey. We will fight daily to help him reach goals. I may be an overachiever, but I can’t let my desires and motivations inhibit his growth. He will be the best he will be. I’m finally ok with taking it at his pace.


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