Monday, February 28, 2011

Chronic Parenting: Talking to my child about my health

Not necessarily a crunchy hippy post, but my crunchy hippiness is tied so closely to my health concerns and to my parenting style!  What can I say?  My life/personality/perspective are not compartmentalized!

 Bean on the big shoe outside our hospital after just having met his brand new brother for the first time!

How many not-quite-three-year-olds get excited - truly excited - to go to the hospital?  Mine does, and I'm glad for it.

Much like I have given thought to how I will address difficult subjects like sex, prejudice, and death, I have contemplated how to talk to my children about my chronic kidney disease.  I have decided to address it as it comes up, but never to hide from them that, indeed, I am sick.  I am vibrant, active, and I don't look sick.  My illness thankfully has very little impact on my daily life; at this point, the impact (except when I'm pregnant) is that I take a few pills every day, I take my blood pressure a couple times a week, and I get labwork done and see my specialist every one to three months.

With that attitude, and simple logistics, both my kids have accompanied me for labwork and to my doctors' appointments.  Bean is quite familiar with the hospital, where I get my labwork done.

When we arrive in the parking garage, he puts in a request for the color of elevator he'd like to ride in (each floor has the elevator and stair doors painted a different color).  He pushes the buttons on the elevator.  Then we head to registration.  Usually Bean will give my lab orders to the person at the desk.  When we're called up to register, I remind him that the person checking us in is going to tell us when we can go see the fish.

The fish in the lab's waiting area have been Bean's favorite part of our hospital excursions until our last trip.  That time, he was much more interested in the lab work!  He checked out the fish, but was really waiting for them to call us back.  The previous time, he'd realized they were taking blood out of my arm, but he couldn't see it coming out.  So this last time we made sure to ask the tech to move her hand out of the way.  Unfortunately, Bean was too short.  Next time he will sit in my lap.

I should probably state explicitly that this whole process is pretty run-of-the-mill for me.  I can't watch the needle go into my arm, but I don't get upset or squeamish - I talk to Bean and the tech as full vials are switched out for empty ones and they all fill with my blood.  Bean stands right next to me and watches intently.  I wouldn't take him if I was squeamish about it.

When they're done drawing my blood, I head into the bathroom to pee in a cup.  Bean is familiar-enough with this to remind me to put the cup "in the door" when I'm done (just in case I forget what I'm supposed to do!  ha!).  Once, when he was probably 18 months old, he proudly showed me a cup and informed me he had peed in it.  So there are drawbacks to this familiarity and ho-humness!  We have since made it very clear that you should only pee in cups when doctors tell you to!

That is the end of the hospital trip.  I answer any questions he has, or respond to his comments and concerns (like strategizing how we will make sure he gets to see the blood fill the vial next time!) we go run errands or do something fun afterward.

The kidneys came up again this past week.  B was learning about the heart at preschool and told me "the blue blood is dirty.  Your heart cleans it!"  No, I explained, though the blue blood needs the heart to do something to it, it is not dirty.  We talked about how your body is like a team - every part has a job and has to help out so the other parts can do their jobs.  I told him your heart moves your blood so it can get to where it gets cleaned.  The heart doesn't clean your blood - your kidneys and liver do.

This led to me explaining that my kidneys do a really really good job of cleaning my blood, but they also get other stuff out that they should really leave in there (protein). 

He asked how big kidneys are, told me how big he learned his heart is, and that was that.  He asked his dad later, "My kidneys work really well, Dad.  Do you kidneys work really well?"

Aside from that, B knows the phrase "blood pressure," he knows I take it, he knows I take medicine because I'm sick (and that I don't want to take it and neither should he).

I dread my kids being old enough to ask me about the what-ifs of my illness - the questions that might demand answers including words like "kidney failure,"  "dialysis," and "transplant."  Will I answer readily?  Or will I try to delay that conversation with the sugar-coated "we'll cross those bridges when we come to them?"  If I don't answer their questions, I fear they will assume much worse than the truth.  Thus, I anticipate answering fully (considering their age and ability to comprehend) and always end with focusing on how healthy I am in the moment.

I consider this an extension of respecting my kids - I'm respecting that, if they are able to ask a question, then they should get a real answer.  My responsibility is to try and form answers that are comprehensible to them - realistic, true answers that may scare them (there have been times when this has scared the crap out of me, after all), and that I may have to help them gain perspective on.

It seems, though, that now is the time to introduce a lot of this stuff - while the concept of death and of the seriousness of someone being ill is nearly incomprehensible to him.  After all, he spent much of December and January telling family members that they were "going to die soon."  And recently he has been requesting "that dead deer" to reappear (we saw a roadkill deer very close up last spring - we walked very close to it, and Bean was fascinated.)  So he does not understand any of this as something to be afraid of.

My hope is that the toughest what-ifs will never surface - or it will be a very long time from now.  My other hope is that the tough questions won't be asked by my children until they are teenagers (but I think they'll ask sooner).  I was diagnosed at 16.  A flow chart was put in front of me that began with my current state (which hasn't changed much in 14 years) and ended with "DEATH."  It just had arrows from one thing to the next, with all possibilities ending with DEATH.  (This was by a pediatric nephrologist - to this day I cannot understand why something that shocking was placed in front of me at 16, by someone who specialized in caring for children!)  So I feel like, as long as I'm not quite so brutal with honesty, they'll handle the truth just fine.  I also hope that my being matter-of-fact and keeping them updated as much as they can understand throughout the years will mean no dramatic moments or conversations about the subject.

As they work out various aspects of their world, I want this to be simply another part of it.

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