Crohn's Disease: an unexpected lesson in motherhood

from Jan

In 1980, I was 7 years old and was quite unknowingly given information that would allow for the best preparation I could have for motherhood:  I was diagnosed with Crohn’s Disease.   

It turns out that motherhood, in my experience, at least, entails the following (this is not a complete list): 

--waiting (mostly) patiently and dealing with uncertainty 

--doing things you might not want to do but know are important 

--celebrating things that are often taken for granted 

--having fun regardless of location  

Upon reflection, that diagnosis 35 years ago surprisingly provided me with the perfect opportunity to master these skills. 

Waiting patiently and dealing with uncertainty 

I have waited for countless medical appointments, medical treatments, and medical results.  Often patiently, but sometimes not.  Many times with uncertainty.  When I have been feeling very poorly, waiting was not a big deal.  It was mostly a change of scenery for I would have just been sitting at home otherwise.  So really, what was the big hurry?  However, there were times of impatience, more so as an adult!  But, I’ve come to (usually) appreciate the waits; I can read, stare into space, catch up on emails, and read trashy magazines. 

As for uncertainty, I discovered something a couple of years ago that has made me much more comfortable with uncertainty.  By the time I am at the point where I am waiting for results, answers, or information, I have no control over the outcome.  I’ve done my part in influencing the outcome by then, if I had any influence in the first place!  So, my worry over uncertainty achieves nothing positive.  This discovery has been surprisingly effective, only showing minor cracks on very few occasions.  

Doing things I might not want to do, but know are important 

Do I want to scoop up legos with Big Eddie (the excavator) again?  Do I want to build block structures so CAT Wheel (another excavator) can demolish them again?  On the surface, not really.  Do I want to get my blood taken again?  Probably not.  However, the outcome of both are things I really want:  time experiencing Joshua’s imagination as he makes up scenarios with his beloved construction vehicles and reassurance that sometime over which I do have some control, taking my medicine properly, is working.  So, while, on the surface, both examples are of things that don’t really excite me, both provide a very comfortable outcome.  I try to look past the mundane task of the request and think about the deeper things I will experience.  Although, there are times when scooping up one more lego may drive me completely mad!  That’s when I excuse myself for a (long) drink of water! 

Celebrating things that are often taken for granted 

When you are a high schooler and so weak that you can't get out of bed, it is a HUGE deal when you feel well enough to get up, get showered, and get dress for school.  That is not drama, just life.  And, sometimes life, even things that seem insignificant to most people, needs a celebration.  So, when Joshua learned how to put on his underpants and pants by himself, you are darn right that we were clapping and cheering.  Kids have to learn everything, even things we take for granted in our daily life.  So, when your kid remembers that the tag goes in the back, go ahead and let out a cheer!  

Having fun regardless of location 

I have to give my mother credit for this one.  When I was first diagnosed with Crohn’s Disease, we lived in southern West Virginia and the closest specialist I could see was 5 hours away in Pittsburgh.  Frequent 10 hour care trips to see a doctor are no one’s idea of fun, especially a 7 year old (and, it was SO LONG AGO we only had an AM radio in our car)!  But, as my mom showed me, singing show tunes really helps!  

Even if we are stuck in a long line at Target, the bus is taking forever to come, or we are waiting for a flu shot we really don’t want to get there is always opportunity for silly walking, goofy jumping, or just plain old making strange faces and sounds.  I am with a 4 year old, I’m supposed to be silly! (I also tend to use Joshua as an excuse for the inevitable food stain on my shirt.)  

While everyone’s experience with and internalization of health and illness and with their children is different, I think these four themes do come out frequently.  I also acknowledge that sometimes life with and illness and, honestly with a kid, can just be hard.  But, when you can, it's worth appreciating the lessons that overlap and let them help make the time more comfortable.