Without a Crystal Ball

Our Journey through Chronic Illness

 

why i write pic

 

 

 

Something happened in the community I feel a very close connection to this past week. An article was published, and it upset a lot of folks. There was hurt feelings, angry words and a lot of lashing out. People brought up very valid points, and words like inspiration porn, ableist, and person first language was thrown around. In the midst of this massive storm, something happened inside of me. I was really sad. There was a sense in me that no matter what was said, there would never be a common consensus of what we believe. Isn’t this the case with everything in life. There are always multiple points of view on just about every topic, and when you add disability and parenting to the mix – hold tight – because there are even more opinions to sift through.

In the wind and the dust that was picking up from the fight, it reminded me of something that I heard at church. It’s a simple message that many of us seem to forget. We harvest the fruit of what we hold within our hearts. When we are sad and angry, the things we harvest are angry and sad. When we are depressed, mad, or feeling slighted, we manage to find ways to harvest those sentiments around us. What is the old adage they use in these moments, “Misery Loves Company”. In 2015 I made a pledge to myself that I was getting off the negativity train. Yes, there are really hard days in parenting a child with special needs, and there are even hard days for me personally being someone that suffers from Depression and Anxiety. In many ways I’m an advocate for both myself and my son. I’m a double whammy. It got me thinking that there is something being missed in all of this, and we as writers, parents, self advocates and people have forgotten the purpose of why we do what we do.

The biggest thing I realized in the argument is everyone is coming in to this argument for many different reasons. There are those of us that are parents that have children with disabilities, and those disabilities are expansive. There are kids with autism, down syndrome, chromosome deletions, neurological issues, brain damage, cerebral palsy, organ failure, adrenal insufficiency, heart conditions, and those that are undiagnosed. That is only a fraction of what is represented in the community. There are children that will grow to be adults and there are children that will die before they reach adulthood. In that there are stories of reaching milestones, fighting for services, understanding diagnosis, managing grief, pain and helping a child develop. It is beautiful and messy story of parenting and parents simply want to remember these times, share these times, and hope that along the way others will understand. There are self advocates who write about their own struggles, and they discuss just about everything and anything listed above. While the points of view are different, the feelings, sentiments and messages are often similar. We all want inclusion, better understanding within the community and we want to reach others to advocate for better care for our children and ourselves. For most of us – we want to feel less alone.

After days of reading these sad discussions, and seeing a lot of mud slinging. I thought to myself – this isn’t why I’m here. I’m here to share our story. I’m here to be the voice for myself for my son and myself. I got brave and started a hashtag #whyIwrite and I shared our story. I shared an adorable picture of Mr. V. He had just got all dressed to go sledding, and he looked so cute. (By the way, he hated sledding that day and his cheeks got cold.) I posted the picture and the hashtag. My reasons for writing are complex. I’m a mother that not only has a child with several medical conditions that are life threatening, but I am also a person that has Depression, Anxiety, Attention Deficit Disorder, and Post Traumatic Stress Disorder. In my life, I’ve faced a ton of adversity, bullying, and the trauma from having so many mental health issues has made me make poor decisions, gave me low self esteem, self worth, and I for a long time, was my own worst enemy.  I did seek help, went through therapy, and still do at times, and I got healthier. Does it mean that I don’t still struggle? No.  It also means it impacts my experience as Von’s mom. Some diagnosis, appointments and procedures are harder on me than on some. I feel things deeper and the worry about the future is more difficult for me because my brain spins things out of control. My story is deeply twisted with Von’s. As his life started, our journey as a mom with mental health issues and a child that was medically fragile started. It’s been a messy, frustrating, beautiful, busy, exhausting, funny, and everything in between kind of life. There have been ups and downs. But in the midst of it all, I realized I had a chance to share this experience and maybe help others. Von’s disease is not represented anywhere in the blogging community. How many people do you know that have Panhypopituitarism, Chiari Malformation, Asthma and Enlarged Ventricles? I know only one. He’s my son. I needed to get our story out. No one understands what we go through, and how we manage it. As I wrote, my family, friends and neighbors began to understand, and a beautiful thing happened, we got a lot more support.

As my voice grew stronger, I felt better about my own journey. I felt like less of a failure as a mother, and I hoped there was a way to help other parents dealing with life threatening diseases. No, his disease is not mine, but his disease effects me daily. I am in charge of keeping him alive, providing medication, keeping him away from illness, and hoping we do it all right so he doesn’t end up in crisis on life support and near death. That’s a big responsibility for anyone to carry. By sharing that that burden is lifted because others understand us. We are not a family you will see out and about much. We can’t be out and about. Mr. V has to be home and safe from viruses and illness. Connecting online has given me a chance to reach other parents in similar situations, and at the end of the day has made the darkness in my heart become lighter.

So in the moment that I shared, the #whyIwrite my hope was we would all stop and remember behind every story, every blog, is a person that is struggling with something. We are hoping to connect, inspire, share, and feel less alone. I embrace all writers that are brave enough to put it out there. Blogging is not easy. You are exposed. However, in that exposure there is great freedom of letting go and moving on. I hope others continue to tell their story of #whyIwrite.  There is freedom in honesty, and sometimes being raw to the core is how we start healing. Cheers to healing, moving forward and becoming inspired in the new year. #whyIwrite is for you, for me, for Von, and for everyone that can’t write. #whyIwrite is to help me, you and everyone that is dealing with a difficult diagnosis. #whyIwrite is to feel less alone, help you feel less alone, and to share an experience with you that is unique, messy, beautiful, difficult, and amazing all at once. Thank you for reading and helping my voice reach others. Please share #whyIwrite and get the movement going further.

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