I have previously mentioned that I am working on a new project and I think I am finally ready to share it with you…
I am writing a book, with the help of my daughter. The goal is for this book to be a help for families and teens living with chronic illness. I won’t be covering medical advice, but will be addressing the emotional and practical aspects of coping with chronic illness. It will be from a Christian perspective, using scripture as a background for a discussion of various topics that are pertinent to living with a chronic illness. (Honestly, I tried to imagine writing it without scripture and quickly realized it would be a very short book.)
The book is in the early stage of writing, but the general idea is to take the lessons my family has learned and to share them with others who are on similar journeys. It will not be exclusively about EDS (or MCAS or gastroparesis or dysautonomia or chronic fatigue) but because those are the issues we are personally familiar with, that is the perspective that we will be coming from. Our goal is to talk to others (kids, moms, family members) with various chronic illnesses. So, we should be able to add conditions like asthma, diabetes, gluten sensitivity, depression, mitochondrial disease and so on to the list of conditions mentioned. Ideally, there will be quotes and stories from all of these folks.
Em will be contributing by having a section in each chapter where she shares her own perspective. Ultimately, I want it to be a book that the whole family can benefit from – that mom can read it and find hope and help, that dad or siblings can read it so they understand what their loved one is going through, that it can be handed to extended family members to increase their understanding and compassion. Most importantly, the teen with a medical condition can read it and understand he/she is not alone. It would also be a book that could go into adulthood with the child as he or she transitions to being responsible for their own health care.
It is a lofty goal but I am hoping to actually get this book published and will be working towards that goal. I am definitely stepping out in faith on this one, but I strongly feel that this is what I am supposed to be doing right now.
We will be covering topics like being different, when people say hurtful things, how you are so much more than what the world sees, how your imperfections make you perfect, the grieving process and loss, finding hope in the storms of life and more…
I would love your help with this. Over the next few weeks/months, I will periodically broach these topics and ask for your input. This is the reason I started the facebook page – so we can have these discussions there. Obviously, you are always welcome to post comments here or contact me by email if you prefer.
So, to start the discussion – (comment below on this post or go here if you want to comment on my facebook page.)
What topics would you find helpful if you bought a book like this? What issues do you struggle with in managing chronic illness (especially your children’s)? Do you have any scripture that you particularly cling to and find helpful?
[I have a list of chapters/topics and scriptures prepared but have some wiggle room to expand the list and include topics I haven’t thought of. I am betting the issues I most want to cover will coincide with the issues you share, but am definitely interested to hear what you have to say! Also, many of you are adults managing your own medical conditions – although this book will primarily be for families, I am interested in what you have to say. You were once a teenager and probably vividly remember how difficult it was to live with a chronic illness as a young person. ]