Without a Crystal Ball

Our Journey through Chronic Illness

 

Whats_Your_Point

 

I have been mulling over the past few months why I am doing what I am doing.  Initially when all of this started, it was to keep people up to date about Von’s health. I still remember opening up that caring bridge site. I remember thinking these sites are for people that are really sick. It was hard to reconcile that Von was REALLY sick. After we were done with the hospitalization in the NICU, I started to back off Caring Bridge because I assumed the worst was behind us.  Then January 11, 2013 happened.  It was the second day back to work after my maternity leave. It was Von’s 3 month birth, and it was the day Von stopped breathing at home. We didn’t know it at the time, but Von was in full adrenal crisis. He was dying.

The minutes, hours and days that followed were the scariest days of my life. I updated Facebook and went back to Caring Bridge. I had no way to keep every one in the loop. I could barely muster the strength to speak to my husband, and the idea of calling people by phone was terrifying. We had so many people pray for us, and we picked up all these supporters during that really scary time. Over the months that followed, people felt so connected to Von, and they were connected to our story. They wanted to know him and know our fight. I didn’t know what to do. I had blogged before, but I never really knew how to have a platform. I tried again in January 2014. It was short lived as I felt as if no one was reading our updates.  Shortly I moved to Facebook. Over the almost 2 years we have had the page, our following has swelled to over 3,000.  We have people from all over the world sending us messages, packages, and letters in the mail. We know so much that Von is loved and there are so many people praying for him.

As a child I had dreams of being a writer. It was my biggest passion. I never had the determination or confidence to put myself out there. I was afraid of the backlash and rejection. Finally in July, I made my first attempt to be published in a world wide blog. I was accepted. To date they have published 14 of my articles. It’s been amazing to reach so many people. It’s awesome to know we have connected to so many people, and my favorite thing is when a new article goes live and my inbox starts popping up with messages from around the world. People telling me they are going through what I am going through.  I have had the opportunity to discuss treatment regarding Adrenal Insufficiency from people across the country. Mother’s with children of Panhypopituitarism have contacted me. My most prized connection was a woman with PHP reaching out to me to thank me for writing and sharing. She was 37, partially blind, and encouraging me to keep Von’s therapy going because she was developmentally delayed, but she was able to live independent, hold a job and be productive. She gave me HOPE. I haven’t had hope in a really long time.

Some place along the way, I have lost track of what my goal and focus is in reaching others. My goal in blogging and putting out our experience is for several reasons. It started as a way to keep people informed, but over time I’ve realized my calling is to help and inspire others dealing with Chronic Illness. I can use my words, my platform to promote inclusion, understanding and empathy for families dealing with these issues. I can be a voice for others that are suffering on the fringe and too scared to say what I’m willing to write. I can do this with the hope that speaking out will make my son’s journey in disease one where he won’t be ostracized but accepted. My biggest fear as his mom is that he will grow up bullied and beaten down emotionally. That he won’t fit in because he doesn’t understand how to socialize. I fear he won’t develop. Sharing my fears gives me strength, holds me accountable and hearing from you helps me get through another day. I realized that this blogging is just as much for you as it is for me. You reading this and reaching out to me is therapy to me. I can dump these feelings, pour out my heart, and I can get rid of the yucky and ickiness that at times suffocates my soul. I can breathe each time I push publish and know someone out there will see this and know they aren’t the only one going through it. There are so many bloggers out there. Many of us within this very community. Many of us discuss the same things, but we all have our own unique story and journey. This journey is hard, and without this outlet I would be absolutely lost. Thank you for reading, responding, commenting and helping us. We want you to know as much as you think we help you, you help us even more.

So what is my point? My point is to help you understand our journey. I want to make disability no longer an ugly word. I want to normalize a very un-normal life, and I hope along the way you can learn and grow with us. If you have a disability or are a parent to a child of a disability, I want you to know you can always reach me here or our facebook page. I respond to every single email and message. Your story is just as important to me as mine may be to you. We can only normalize this as a unit. I need you as much as you need me. Please help me continue to spread our word about chronic illness and disability. I will spend the rest of my life fighting and working for Von. I will never stop.  That is my point.

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