Tuesday, May 22, 2012

Dear John Paul,

Today is the fourth consecutive day that your father and I have been pulling the night shift, either training nurses or covering for no shows.  Typically, since your dad is more of a night person--he stays up for the first shift until 2 or 2:30am and that's when I start my day.

I have to tell you, your dad is a pretty amazing person.  I am so blessed to have him as my husband and head of our family.  He works tirelessly, not only providing for our family's material needs--but is 100% invested in your care and in leading our family with his positive attitude and supernatural outlook.  He is constantly brainstorming creative ways to "beat the system" of established ways to get the help we need.  He is always looking to give me a break when he has slept less than I have and pushing forward to be present to the other kids as well.

I can't imagine being on this journey with anybody else.

More and more of your extended family is getting trained up to learn how to care for you so that they can help give us a break when the nurses call out unexpectedly.  Grandma Gabriel came today and is planning on coming regularly to train, Aunt Suzanne is already pretty much a pro, and your Godmother, Aunt Mary is hoping to start training too.

This is a quiet week on the appointments front, but I am looking forward to learning the rest of your body with the massage therapist of Wednesday.  Right now I only know how to do your face and legs but should learn the rest then.  

As always, I love you so,

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