The rollercoaster. I heard it a lot when we first got the diagnosis. I was told that life would never be the same. Doctors told us we would be “busy”. We were told there would be highs and lows. We were told this would be like a rollercoaster. I remember the first day of Von’s life. It was like that click you hear when the cars just start going on the ride. Slowly but slightly blurry you get going. You are tired, and everything is so new. Each day is a new adventure. There are poopy diapers, bottles, breast feeding, spit ups, and sleep training. It’s all a learning experience. You climb the hill and you hear the click, click, click of the cars as they climb. You reach the top of that first hill, and you reach your hands in the air. Feeling the wind gently wish against your face, and you think life could not get more sweet. The day Von crashed at home, we were at the summit of that hill. We were enjoying life as parents, and finally settling in to a life we thought would be the way we imagined. On January 11, 2013 as we just reached the peak, the world sped up very fast and we started our descent in to a world of Chronic Illness.
That first hill was very tall, and the speed of the subsequent crash that landed Von on life support took our breath away. We were on a ride that at times left us feeling very out of control, nauseated and made it very hard to scream let alone breathe. There have been times I have desperately wanted to get off this ride. I want to simply be a parent to a child. While I don’t find Von to be a burden, the disease itself is complex and very difficult to manage. We are balancing daily to keep him alive by managing all his hormone levels, asthma and his neurological disorders. His doctors added a tight rope to our roller coaster this summer. It’s been hard to manage being on both a roller coaster and a tight rope at the same time. There are thrills when Von makes huge accomplishments. This past fall when he finally started to speak, it was this huge moment of glee. We were whipping around corners, and laughing and screaming for more. He was making us so proud watching him finally start to have a voice and a say in what was going on around him. Von was no longer a spectator to his life, he was becoming an active participate!
We got comfortable on the ride. We felt like we were able to manage his diseases. Dare I even say that I felt like things were under control. Diseases will have a way of reminding you that you are not the one in control. As we were speeding up and whipping around corners, doing loop de loops and laughing in glee, suddenly we peaked another hill, and my stomach dropped to my feet when Von crashed again just a few weeks ago. As we were finally settling in, enjoying the ride and feeling comfortable with his nurses, Von’s Adrenal insufficiency had other plans. I finally decided it was time to be a mom. I had a list of Mom like duties I was going to fulfill. There were endless amounts of memories I wanted to ensure we made. That morning I baked cookies. It was the first time I became vulnerable to the disease and allowed the nurses to really just be with Von. His blood sugar crashed, his heart rate became irregular and we had to spend 2 days in the hospital. I felt nauseated, like the rollercoaster had spun out of control. It was if we were stuck upside down for those two days. During the stay I attempted to sort through what I could have done differently. I beat myself up thinking I had failed him, and I felt dizzy thinking I had put him in harms way.
These are the moments I realize this isn’t in my control. This is the rollercoaster ride telling me who the true boss is in this situation. I can certainly pretend to be in control, and assume everything is fine by managing my reactions, emotions and stomach as we go through the highs and lows, but I am never going to be in control of this disease. This disease has it’s own plan of how it decides to react. There will be days that things will be ok, and other times it will feel like we are walking that tight rope to a crisis. Through the journey, it is difficult to come to the conclusion that I have to get use to this way of life. There are moments and days I desperately want off this ride. I don’t want to deal with chronic illness. I want to simply just be. However, I remember this is who my son is, for better or worse, this is the story of his life. We will fight the disease daily, there will be hard days, good days, funny days and sad days. I have to remind myself the ride will continue and I will have to find a way to manage those tough days without feeling like a failure. I have to have faith that we can get through it and know that there is a purpose for this ride. A ride that I would love to not be on, but it’s a ride I can’t imagine getting off.