Hannah, hamsters, coaches and CF

During the last few days one of Hannah's assistant softball coaches passed away suddenly at the age of 44.  Her other hamster died too but she immediately started plotting ways to get another one.

A trip to the Psychologist today revealed something I had been suspecting for months.  Hannah has realized the battle that is cystic fibrosis.  Up until recently she didn't seem too concerned about the severity of her illness; after all she is extremely healthy.  She has started paying attention to lung function and when it got to 109 after being as high as 132 I think a light went on in her head "this is pretty serious stuff I'm dealing with.  Plus she has started to interact via social media with other kids and families with CF in their lives.  She is seeing how this rotten disease affects each CF patient differently.  She "Skyped" a 17 year old in Florida that weighs 80 pounds and is on the transplant list. Hannah on the other hand has perfect lungs for a 12 year old with CF and weight in the 90th percentile.

I think she understands that all that could change.  A nasty lung infection could bring her lung function down in a hurry.  Her diabetes could affect her weight.  She is not a normal 12 year old. She internalizes her feelings by staying in her room or covering them up with silliness.

What to do?  This is heavy stuff for us.  The psychologist suggests that she has someone available anytime to talk to when bad thoughts of CF enter her head or she has questions or just wants to talk. I will stop whatever I am doing anytime to talk to her.

CF stinks.  There is no break from it, it doesn't go into remission, it's there just waiting to get worse and suck your breath away.  Anytime she could get one of the deadly bacteria that takes so many so young.  And you can't stop it from happening you don't know where these super bugs come from.  They can be in the dirt that she walks in, stagnant water, and the air she breathes.

You can't put your child in a bubble.  She needs to live her life and not worry about getting sick.  We will just deal with it if it happens but I have faith it won't.