When I Felt Like a Passenger On My Son’s Journey With a Rare Disease

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 didn’t feel 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 breakdown.

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. 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. 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 caretaker. 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. During 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. It felt like there was never time for me to be a mom, I was his in-home social worker.

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 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.

Slowly I was free-falling into a space of the unknown. The wind felt so harsh against my cheeks, and my heart was beating faster than the speed of light. 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 Mom. I wasn’t the passenger, 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 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 three 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 Von’s 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 breaks, and at night I’m more exhausted than I was working 40 hours a week. It doesn’t matter though because now I manage 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 too short to get caught up in the “what ifs” or “could bes.” And now I’m finally living the life I feel I was supposed to live.

Follow this journey on Without a Crystal Ball and Von’s Super Hero Facebook page.

The Mighty is asking the following: Tell us one thing your loved ones might not know about your experience with disability, disease or mental illness. What would you say to teach them? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images