Wednesday, April 10, 2013

Tonight I signed on to my blog to turn it off.

There was a pending comment.  Thanking me for sharing our story.  Finishing by saying live life like Jack.

We should all live life like Jack.  We should be less concerned with what others think, say, and value.  We should spend our time doing the things we love.  Surround ourselves by those we care about.

I have often feared this day, the day Jack and Kate we come to realize just what it means to have Cystic Fibrosis.  So this is my letter to them.

My darling babies,

From the day I was told you had cystic fibrosis I vowed to fight.  I also made up my mind that you would be Jack and Kate who have Cystic Fibrosis.  Not those kids who have Cystic Fibrosis Jack and Kate.  You were not going to be the Poster Children for this disease and I was not going to let it define you.

I was going to protect you and teach you to handle your CF, but truth be told you have taught me that you are so much stronger than this disease.  You have shown me how to live life and enjoy what we have every day.  You have guided me through this.  Jack, Kate and Sam this was not the life I envisioned, it is so much better.  Your love for one another, your support for one is more than any mother could hope for or dream of.

I want you now to know, you are strong, resilient, and empathetic.  You Jack have spent time in hospital than most do in life time, and you kate have been by his side.  I am the one who is blessed to have you.

Know this my beautiful babies, it is a different world for children with cystic fibrosis.  I will fight for you every day.  Do not worry about your future.  I am not worried.  I am in awe of our strength and courage.

I love you with all of my heart, you have given my live meaning.

Mom mom