Tuesday, April 12, 2011


Jack and me

Jack was diagnosed with Cysitic Fibrosis thirteen years ago today.  At the time I was told "many children with CF were reaching their 18th birthday".  Jack is currently 13, the idea that I would only possibly have five more years with this child is heartbreaking.

In the beginning, I just never wanted him to leave the house.  If he did not get a cold, he would live.  Of course Jack, as soon as he was mobile fled the house.  Anything with wheels would do, his sister's doll carriage, the baby was tossed out, his red plastic car, he even took the keys to my car when he was three.

Fortunately, the Cystic Fibrosis foundation is a well run, well oiled machine.  The progress they have made is remarkable.  Mothers today are told very different things about the future for the children.  However, the future is still uncertain for all children with cystic fibrosis.  The care involved is tremendous. Daily chest pt, airasoles, medication is just part of it.  Many are unaware of the time and work it takes to keep a child with CF healthy.  Sometimes that ignorance can be hurtful.  

Jack, like other children with cystic fibrosis has had his share of hospital stays.  None of them easy.  His pancreatitis has been unforgiving.  I have watched this child endure hours of pain, needles tests and weeks without food.  This january I watched him suffer through a near fatal pick line infection.  The courage and resolve he has shown me, well I am blessed to be his mother.  He has taught me how to be compassionate, loving, forgiving and a fighter.  

So in may I am walking for my beautiful boy, his sister kate and every other child and mother and father in this fight.   Join me?

And a heartfelt thank you for reading my story.

This is for you My Beautiful Boy:  http://www.youtube.com/watch?v=aePWkeDxRjE

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