Without a Crystal Ball

Our Journey through Chronic Illness & Autism

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When I gave birth to Von, I didn’t feel like a mom. I can’t really say what it feels like to be a mom, but I felt an emptiness. He was whisked away on to an incubator as they took his vitals, and then he was hooked up to machines. I only held him for a brief minute before I said goodbye to him for hours. He stayed in the hospital for almost two months. We never really bonded early on the way a mother and child should because there were so many medical professionals constantly around us. When Von’s feeding amounts were predetermined and diaper changes dissected and measured, I never felt like a mom. I felt like a passenger on the ride. I remember calling my husband after another really long day in the hospital, and I said to him, “I can’t do this anymore. I’m tired of feeling like a prisoner in the hospital. I’m tired of not being able to make any choices for my son.” Shortly after that I begged and pleaded for his release. He was released within a week of that break down.

We took Von home, and I brought home a child that was still very sick. He didn’t eat well, and he didn’t sleep well. We were still prisoners at home to his unknown disease. I never once felt like his mother, I felt like his nurse, his case manager and his doctor. There were days I would feel so incredibly distant and unsure of myself. I watched my friends have these amazing relationships with their children, and I felt detached and aloof to being a mom. There were days I would feel like a spectator watching everything around us but not feeling like a part of any of it. Returning to work only made this feeling worse. My doctor said I was having anxiety and she upped my medications. But it didn’t feel like anxiety, it felt like emptiness. My days were spent scrambling to keep up with a job that I no longer enjoyed, managing Von’s medications, medical appointments and therapy schedules.

From the moment Von was 3 months old, we had staff in our home. I was never his primary care taker. We had nannies, nurses and therapists in and out of our home. There were so many voices, opinions and suggestions about what I needed to do for him as his mom. There were days I would be driving, listening to the hum of the road, and wondering what it would be like if I simply just kept driving and didn’t look back. I truly didn’t think Von needed me. He had so many people in his life managing his care, and I felt helpless to make decisions about his care. I would longingly watch my friends enjoy their motherhood, and I would wonder what it was like. I would dream about giggles, running, playing and simply being with my son. When I wasn’t working, I would be sitting with my son in fear. Instead of enjoying my time off, I was cataloging appointments, implementing therapy, fighting with insurance companies about treatments, bills and medications, and on the phone with the county/state discussing paperwork needed for disability services. There was never time for me to be a mom. I was forced to be his in home Social Worker and I hated every single minute of it.

Work became a chore as I lost all interest in the vision of my company. I didn’t believe in them anymore. When I was asked to do things, I would attempt to oblige but it was always half-heartedly. Each day I would sit at my desk, I would dream about quitting and not looking back. Then I would stare at our mounting bills, car payments, mortgages and debt and snap back in to reality. Then one day I just couldn’t do it anymore. My employer told me I needed to focus. I knew I couldn’t focus because my son was just diagnosed with a  serious heart condition.  They told me to not think about his heart and only focus on work. In so many words, I was told to pick between my son or my job. Suddenly, I felt this tremendous push to quit my position. It’s difficult to describe, but I felt like I was pushed to my limit and needed to be done. If an employer is going to make me pick between them or family, my family will always win. I had no idea what I was doing. I just leapt. It was as if I had just jumped of a 300 foot cliff, and the only person that was going to carry me to ensure I didn’t fall was God.

Slowly I was free falling in to a space of the unknown. The wind felt so harsh against my cheeks, and my heart was beating faster than the speed of light. I felt like my chest was going to explode. Yet, I didn’t stop the fall. I put in my notice without another job. All that mattered was I knew I needed to finally be a mom. As soon as I made the jump, a freedom opened up in my soul. I was able to sit with Von and enjoy our time together. There were enough hours in the day to get his therapy done, schedule appointments, talk to doctors and manage his medications. We were able to let go all the staff we had, and for the first time we were simply a family of three. My brain became calm as the outside chatter and opinions ceased. It was finally up to me and me alone to be the Mom. I wasn’t the passenger or the hostage to this disease, I was the nurturing mom that got to cuddle and play with her son. Finally, I had freedom to be with him, and I got to know him outside of his disease. I never thought it was possible to see him for more than this disease, but I found a child that was bright with energy, sweet, funny and incredibly smart. I watched him thrive and smile a whole lot more, and I realized that fear had held me back. It was fear of leaving what I knew, and fear of leaving a career behind. Yet, in leaving all of it I found the freedom to be who I actually was and not who I trained myself to be.

I watched him thrive and learn new skills every single day. My fear of being broke, or having to drastically change our lifestyle was washed away with every single cuddle or kiss. I realized that for 3 years trying to do it all to show the world I could only made me a prisoner of my own anxiety and depression. There was only one way to be free of that pain. It was to be his mom, care for him, manage his disease, and enjoy every single minute together.  This job is far more difficult than I anticipated. I rarely get any breaks, and at night I’m more exhausted than I was working 40 hours a week. It doesn’t matter though because now I control his upbringing. I am no longer relying on nannies and nurses to implement his care and therapy. I am taking it all on, and together he and I are a great team. I am so grateful I took the plunge and encourage anyone debating to take the leap. Life is to short to get caught up in the what-if’s or could be’s, and I’m finally living the life I was suppose to live.

 

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3 thoughts on “When you Learn to Become a Mom

  1. April Jagger says:

    Perfect description of your journey and a pretty close description of mine! Thank you for these words. They are honest, clear, and full of beauty. You are “Mama” to the core!

    Like

  2. Carrie flores says:

    A story I can relate to also. I often wondered what happened to you guys after you left the hospital three years ago. It’s crazy how fast three years goes bye. Von looks like a very happy boy and full of energy

    Like

  3. Sam Gonzales says:

    I loved this Katie and I’m so happy for you and for Von! You are an amazing mom. You always have been but now you are able to truly experience the truth in that.

    Liked by 1 person

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