Each and every day I hear about how strong I am for parenting a child with a life threatening disease. I use to bristle at this because on the inside I did not feel strong. I felt like the world around me was collapsing. There is nothing more a mother wants than for her child to be safe and loved. I have loved my son like crazy, but I have not always been able to secure the safety of his health. His body is working against him each and every day, and in that uncertainty we have felt a lot of fear. I have woken up at night in cold sweats dreaming about his death. My dreams have at times have turned to my own body taking on his disease, and if it were possible, I would live with everything he faces. Biology made my body whole, and it gave my son pieces that are missing, a heart that has a broken valve, and a brain that has grown too large and has applied pressure to his brain stem. All of this effects every part of our day, and there are moments when I feel very, very weak. Over the past year, I have felt my skin begin to stretch and get thicker. Diagnosis and disease seem to effect me less because I’m in constant search of what we can do to help him. Here is how I manage the adversity of dealing with my son’s chronic and life threatening disease.
Over the past 3.5 years it has become easy to get stuck in negative thinking. Many people do this when they learn about disease. The most common question I have heard from people about Von is, “will he lead a normal life?” I guess I ask anyone to define what normal truly means. No life in its entirety is actually normal. Every single person that is on this planet will face adversity and pain. There will be wars waged within them that no one will ever know about, and yet they appear normal on the outside. Rather than focusing on what isn’t normal about our day to day, I think about this is just our life. Life is different, and many lives are different. We give medications daily to keep him thriving. He attends therapy to build skills, and we work vigilantly with specialists to keep him as healthy as possible. His life will be different than mine, but my life has been different than even you reading this entry. There is absolutely no normal in this world. The only normal that we believe is one that we create in our imagination. I focus on the positive that there are treatments to help him. There is surgery to repair his heart and his brain. There is no certainty for anyone’s life expectancy. I do not focus on life expectancy. I focus on quality of life.
Part of parenting a child with a life threatening disease and disability, is that you become a part of the community. I carry Von’s disease with me every single place, and his disability has impacted and forever changed our family. It is not good or bad, it is just what is has become. I see the discrimination of the greater community of children like Von. I see the failure of services and the government for protecting vulnerable people like my son. I have witnessed the public schools raise their hands in confusion about how to help my son. Instead of giving up and accepting this status quo, I fight and I write to raise and build awareness about what life is like with these diseases. Families like ours are not using government programs because it’s fun or because we want to be in this position. Disease and disability can happen to anyone, and as a society we need to become more inclusive and kind to people of all abilities. Advocacy means that I don’t always say the things people want to hear, and I know I have bristled feathers through the process. However, change does not happen by appeasing the greater community. I will continue to advocate for better services, better therapy, better medication and better education options for children and adults like my son.
Whether you are a believer or a non believer, you must have faith that things will work out in the way they are suppose to be. I know I do not control my son’s disease. It will eventually kill him. I know that his time here will be shorter than that of a typical healthy child. However, that does not stop me from having faith that we can find a cure. I have faith that the science will find better medications and medical interventions to help his body do a better job of fighting the missing hormones. I believe that God will help my son stay strong and fight as long as possible. I believe that he will take Von when he can longer fight. No matter what happens, I will never stop believing that there is purpose for his life here.
The stress of dealing with disease is really hard on my mental health. The best way I have learned to manage that stress is to exercise. I run, walk, and participate in lifting and classes. Sweating and releasing endorphins help me feel better. It gives me strength and energy to face another day. Staying strong and healthy for my son is the best thing I can do for him. He needs me here to help him, and I need to remain as healthy as possible for him. Nothing cures a bad day more than a really good run.
The simple motto in our house is “If you don’t laugh, you will cry”. When we are faced with really challenging news, my husband and I always try to find some way to laugh. We say silly things to each other, watch funny shows or movies, or find ways to make our son laugh. Laughter is contagious, and it releases so much anxiety and stress to simply let yourself go in the happiness. It certainly will not change the circumstances, but I promise a pillow fight will definitely make you feel better than sitting on the chair crying. We do cry at times, but we also believe that laughter is our best medicine. Most people that know us know that we try not to take things too seriously. I encourage any parent or care taker to take time to laugh and enjoy life despite the stress.
We want to know: How do you manage the adversity you face with chronic illness?