Friday, June 28, 2013

Finding all the answers

Over the last couple of weeks, Ronan has discovered something - his open heart surgery scar.  One night as I was changing him and getting him ready for bed, I saw him look down and touch the scar.  He ran his finger up and down it, as if he was trying to figure out what part of his body this is, and why it is there.  I've found him doing this a few other times. 

I've often thought about what I would say to Ronan about his open heart surgery and his heart in general.  About what I would say to him about his hearing loss and why he needs hearing aids.  About CHARGE Syndrome.  Every child will need to deal with being different at some point, but in Ronan's case his differences are a bit more evident.  Given that fact, we've had some experience with explaining what is going on with Ronan. 

I actually find most children's questions about Ronan refreshing.  There is no judgement, just genuine concern and curiosity.  I remember when Ronan was wearing his helmet and we took him to the Santa Monica aquarium, a cute little boy approached us.  He pointed at Ronan, and looked up at me, and asked in a concerned voice,
It's Super Ronan!

why does he need to wear a helmet? 

I told this little boy that Ronan had been sick and spent some time in the hospital.  I told him that the time spend recovering had made a flat spot on his head, and the helmet would help.  Then this little boy said,

Oh. OK.  I hope he feels better.  

Then after a pause, he asked me, do you think my head is flat too?  I had a cold awhile ago.

With adults, though, you get that look.  That look is either terror (WTH did I get myself into asking?) or pity (aww poor little boy).  I always try to follow up quickly with how well Ronan is doing and how happy he is.  He really is a happy little boy. 

Although I've come up with my repertoire of responses about Ronan, I have yet to come up with what I will say to him.  It terrifies me.  And seeing him cognoscente of his scar, reminds me that I will need to find these answers. 

At the beginning of June, Dateline did a show on a family whose five children all have cardiomyopathy, a form of heart disease.  Two children had received heart transplants.  A third was showing signs of heart failure.  What really struck me though, were two things.  First, if I thought it was scary sending an infant into open heart surgery, I am even more scared to send Ronan in for
another surgery now that he's older. 

He may be bigger and stronger, but I'm not. 

I don't know what I will do when he tells me he's scared, or angry, or worried.  The other thing that I found amazing about this segment was watching the parents talk to their children.  They explained what was going on, translated medical terms, and were able to relate to the appropriate age of each child.  That takes a certain kind of grace. 

For now, I've started reading Ronan his Zip-Line book again, which is a children's book about heart surgery and scars.  We will also continue to approach questions with positivity, and make sure that happens in front of Ronan.  Sometimes I think people forget that even if a child has a special need of some kind, it does not mean they do not understand the conversation.  There have been a few cases when I've wanted to say to someone, hey, Ronan is right here.  He may not talk, but he understands a lot more than you'd imagine.  It is my hope that he picks up on the positive attitude that Paul and I try to put forth with all things Ronan, and especially all medial things.  This kid has already beaten so many odds, it would be a shame for him And, I hope that when the day comes to answer his questions, I will somehow have those answers. 

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