Jacqueline

I named this blog “123” because it’s the One Hundredth and Twenty Third Blog!  I am amazed and delighted by all those readers that take the time to read about our life with Anna. I  think about you as I navigate this chosen path of the Warrior.  When feeding pumps go faulty, mornings bring the […]

I have the luxury to be a solo warrior from today until tomorrow at 5:30 pm.  Since Anna is at school this will not be a full two-day adventure for us.  It will be a two-day adventure for me.   Tonight I will walk to a local restaurant with my two other girls, Gabrielle and Elsie

And it’s here.  I get up I fly around and before I blink it’s 6:12 a.m.  This is the magic time for the morning of Anna’s school days.  I feel like I go fast, I do so much, but it’s always me fighting the clock.  I’m a good contestant.  I wake up and I get

It’s never been intentional.  Maybe she’s just a part of me that comes along so much and is on my mind so much sometimes I forget her physically.  Which sounds weird.  But let me tell you, when a child does not talk, does not say “Mom, get me,” “Mom, I want this, “Mom, mom mom,”

It’s not spelled wrong.  It’s that time of year again for the Kammy’s Kause trip.  This is the largest fundraising event for Anna’s support group, Wolf-Hirschhorn Syndrome, or 4p- (Four P minus).  For those of you who don’t know it’s the fourth chromosome that is affected.  The star of the show, or one of them,

I didn’t think about it too much, although it did cross my mind.  I’m a granny with a special needs daughter.  I have always done everything with Anna so why would this be any different?  Well, it is.  But different is not bad, it’s actually tricky. Whenever and wherever Paul and I go, there is

Yes, I’m a Warrior.  Sometimes I don’t want to be.  Sometimes I just let things go because they are too much.  In my 23 years of caring for Anna, there are agencies I cannot stand.  I mean, I loathe them.  Two of these are the DHS (which I’ve renamed the Department of Human Stress) and,

We recently went to the mall with Anna for Elsie Jane’s first birthday, Aunt Anna.  The idea was to get her a Build a Bear at the store in Somerset Mall.  There are only a few malls that offer this store so we met the family there for the event.  Parking in this mall can

Journaling has been a “saving grace” to me all of my life.  While I disliked being forced to do this in literature in high school now I use it for self care.  I began journaling when Anna was born.  As you know I still have those journals and sometimes I post a page or two

Dear Readers:       I have made this blog a great part of my life for the past two years.  I have never missed a week.  Maybe posted late, but never completely missed a week.  I do this for Anna,me and  for those who live this life, and for those who want to understand this life.  Or