Jacqueline

As I’ve said before, “Lazy days of summer” is a twisted term for me.  Summer is the busiest and most unorganized time of our year.  Anna is out of school, and we try to make a routine, which is a joke in itself.  There is no routine to days that have no bus to scurry […]

The mountains and the stress involved with those horrific hours are now behind us.  We grow stronger from every time we sit on nails waiting for a bit of relief, but we persevere.  Now we were home and back to routine.  Good sweet loving routine. It’s like a gift for us all, routine that is; 

We recently took a short trip to North Carolina.  It is a bi-yearly trip.  Anna does not always travel well.  This took me a few weeks to write about this day.  It is important to write about.  It is ugly.  It is difficult.  It is the truth.  On our last day there Anna was not

Dear Beloved Readers: Our road trip was heaven and hell.  I will be blogging about it in the near future.  One of the heaven parts of it was an idea that I will interview Warrior mothers and showcase their answers here for all to enjoy! We were back late last week, running to get dogs

We took a little family trip for Anna and us.  Another beautiful family with a young adult with Wolf-Hirschhorn Syndrome.  We met this fabulous family in 2003.  We have remained in touch and visited for many years.  This is always important, but in this special needs lifestyle it can be hard to find a place

So Paul scheduled his surgery for an eyelid lift, due to headaches, and vision starting to be impaired.  We purposely booked it for a Thursday because I have Thursdays off.  Two days before, we received a text from the school.  “Half day on Wednesday and release at 10 am on Thursday due to testing.”  Great. 

One word. Take action.  This happened to us the weekend of Easter.  I was compiling my other daughter’s wedding album in the dining room.  Music was playing, deviled eggs were cooking.  The siren went off.  I looked outside.  It looked so still it was angry looking.   I had learned from talking to another mother at

I am so pleased to say that Paul, Anna, and I are finally out of the dark cloud of the worst type of stomach bug that Anna has ever had.  No fever.  No crabbiness.  No other symptoms.  Massive diaper blowouts for 24 days.  You ask, why so long?  I thought everyday it would stop.  I

Anna’s syndrome, and all other disabilities often involve siblings.  Today we focus on brothers.  Anna’s brother, Grant is a wonderful, caring presence in her life as most siblings are.  Many brothers take on the role of big or little brother.  Grant is a big brother to Anna, he is 27.   If your child has severe

Anna had her yearly physical today.  We have moved to the adult side of the practice of medicine, her PCP.  It was an uncomfortable transition at first.  Now it is a dream.  We are well taken care of.  In the adult world there are only a handful of special needs patients.  Anna is the minority.