A day in the life

I often write about the comparison of normal children vs those that have a chronic illness.  How about those that have a life threatening illness.  What about the kids who have cancer or something else that keeps them from doing the day to day.  This is often a comparison that I want to make between my kid and those that have cancer, etc.

But the thing is you can’t make that comparison.  You can’t compare a child who has a disease that could potentially kill them to a child who has something that has to be managed on a daily or even hourly basis.  If your child has cancer – I am truly sorry! You are simply making sure your child is going to live!  However, for us we have to process so much more!

Not only do we have to decide if our child is going to get up we have to decide when they do get up how much can they do.  Can they go to camp, outside to play or swimming?  This week Nicole has been going to Horseback Riding camp and volleyball camp.  She has managed to do both for 3 days out of 4.  This is a pretty good run considering she is exhausted when she gets home.

I couldn’t be more proud of this girl who pushes through every day to do what she loves.  She got rewarded yesterday by riding her favorite horse.  I am going to talk to her instructor about leasing in the next few days.  This will allow her to get on her horse at least 1x a week.  This is what she loves.  She doesn’t ride for any other reason than she simply loves it.

So for this chronically ill kid I am going to move mountains and make an already impossible schedule even more nuts to allow her to do the one thing that brings her more joy than anything else!

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