Tuesday, January 20, 2009

Statistics and Parenting a Chronic Illness

So I happily opened my email from the National Foundation for Celiac Awareness yesterday to peruse the current scuttlebutt in the celiac community. I used to volunteer for them before baby KC was born and think very highly of the organization. I scroll down the page and in the "Celiac in the News" section I see,

Celiac Disease in Sibling Ups Risk of Non-Hodgkin's Lymphoma

Keep scrolling down......wait......what was that? Scroll up..

Celiac Disease in Sibling Ups Risk of Non-Hodgkin's Lymphoma

Hmmmmmmm. What do they mean? I usually try to ignore these statistics, but it is coming from a reliable source that I trust.... oh ok I'll bite.

Research done by the National Cancer Institute in Bethesda MD has found that the non celiac siblings of individuals with celiac disease are at higher risk then the general public for NHL (that's not the hockey league unfortunately). Hmmmm pause again. So what about the kids with celiac disease? What does that even mean?

So I click the link to the NCI and read more...

celiac disease patients had a significantly increased risk of NHL (5.35-fold)

google five fold....five time more Non Hodgkin's lymphoma...familiarize myself with the early symptoms... note that my children do not exhibit any of them... add Non Hodgkin's Lymphoma to the mental list of potential statistical dangers that my family is at risk for because of their celiac disease. Remind myself of the illnesses associated with celiac disease (as posted by NFCA website).

Dermatitis Herpetiformis
Type 1 Diabetes
Thyroid Disease
Sjogren's Disease
Juvenile Idiopathic Arthritis
Intestinal Cancer
Peripheral Neuropathy
Down Syndrome
Turner Syndrome
Williams Syndrome
Liver Disease

Liver Disease, that's what my Dad is currently dying from, but he has never been tested for celiac disease, the doctors don't see the need even considering his grand children's diagnoses.

Oh and lets not forget my favorites statistical danger research:

Children diagnosed with celiac disease have a threefold chance of dying young, from accidents suicide or violence. (University of Nottingham research available on medscape if you are a member.)

Unfortunately this is where my mind goes when I read this research. Along with a good chunk of my day. That's why I stopped reading the research. Not just yesterday, but a couple years ago. Seriously...what am I suppose to do with that information? How can I raise happy well adjusted kids when I've got those kinds of statistics looming in my mind?

Of course, I didn't stop reading cold turkey, it took me months after our family's diagnosis to stop the madness. During that time I became a bit maniacal on the parenting front. I became obsessed with every accident, every risky impulsive behavior, all the times that there was lack of attention or focus, every ache, pain, rash, fatigue, sneeze, yawn. It was exhausting.

It came to a head over the summer. Even though I had stopped reading the research the statistics still plagued me. I realized that I was angry and upset with my family almost all the time, especially Gabi who is my most sensitive celiac. Then one day after a particularly difficult interchange, it suddenly dawned on me. I was parenting a disease not my children! I wasn't really angry at them, I was angry at the disease that had a hold of them. Symptoms, behavior, diet, I had become so obsessed with celiac disease, that it was all I could see in my children. I had become so frustrated with the helplessness of not knowing how to protect them from their statistical future. I was parenting from a place of fear, focused on their illness and had totally lost sight of my children.

Deep forward to today. I have done a pretty good job in recent months at parenting to my children's strengths, them being back in school helps. Seeing them working, playing, and learning just like other kids their age helps me to see their strengths and gifts.

Perspective is good.

Still, it didn't take much to throw me into that downward spiral. These are the pieces of parenting my celiac kids, that I don't share with my friends. I think I keep it to myself because I don't want people to think I'm crazy, or worse yet, feel sorry for me. I hate pity.

The reality is there are much worse illnesses that could plague my family then celiac disease. Much worse chronic conditions that could separate them from a normal life. Many Mom's that have it a whole lot worse than I do. Mom's who are currently watching their children suffer from Non Hodgkin's Lymphoma, or an equally life threatening or debilitating disease, not just the threat of one.

God Grant me the serenity to accept the things I cannot change;
Courage to change the things I can;
and the wisdom to know the difference.

Statistics have a place, but not in my daily life.

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