For those of you who do not know, I have Focal Segmental Glomerulonephritis - or FSGS - which is a kidney disease. I have had the disease for a long time now, about nine years. (Full story begins HERE and meanders throughout my blog.) It is not something that I talk about often because I have friends that have it much worse off than I do, but it is something that I live with every day and am thoughtful of at every meal (no potassium, thankyouverymuch) and the twice a day that I take medicine.
Whether I like it or not, it is also something that I think about often as I look at Abby. My form of this disease is in no way hereditary - go back to that first link and you'll see that it came from a specific incident and not from my genes. That is a blessing in reality. What I get to thinking about is that my lifespan will likely be shorter than my healthy counterparts. I am not to the point of needing a transplant, and my current nephrologist has never even mentioned one, which is a good sign.
Abby is two and a half and very unaware of my illness, which is a good thing. I can fake that I'm feeling well most of the time that I don't, and when I'm really fatigued I can be open enough with Anny and ask her to compensate for me and things go off around the house without a hiccup. I can acknowledge that this is a reality that will not last forever, and I don't want it to. We were fully aware of my health concerns before Abby, heck we knew about it before we were married.
With that knowledge in mind, last year I ordered a book on Amazon called "Raising an Emotionally Healthy Child When a Parent is Sick" by Paula Rauch and Anna Muriel based on a Massachusetts General Hospital program that both are involved in. There are hundreds of books that have been written about how to be a (healthy) parent to a child with health issues (emotionally, physically, you name it), but very few written about those of us who are unwell with a full-fledged energy machine in the house.
The early chapters are dedicated to stages of childhood development, from infant straight through post-college. The basic focus of the chapters is effective and appropriate communication with your child - and that openness and honesty trumps hiding things. This is a personal mantra of mine as well, so maybe that's why the book was perfect for me.
The book is also very frank about every step of the journey of someone with a chronic illness - from nagging pain and official diagnosis all the way through funeral planning. There are lots of great ideas about things to do to set up traditions with your child no matter their age at the time of diagnosis, and ways to honor those traditions upon your passing.
There is a large chunk dedication to ways to continue to maintain a fairly-normal home life, even if you are stuck in a hospital by using a team of people to communicate about your condition and assist your co-parent with the daily things that have to occur as a parent. To be honest, I got more out of that section of the book than a lot of the rest. I know a lot about child development and have been a part of the end-of-life process for several people whom I cared about. I had never thought about how to assemble a team of able-bodied people to help with the mundane that would be both helpful for me and my family and give people a way to help. Very interesting stuff.
I think that the bottom line of this book is that it is a book about parenting first - communication, asking for help when you need it, honesty and planning a legacy for your child and family when you die. The book is thorough about a lot of different aspects of parenting and illness, while being concise enough to be a fairly quick read, even for a non-book-reader like me. I would highly recommend this book to someone who has a chronic disease and people who rely on them for daily care.