Jacqueline

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. 

Before I head into this week’s post I want to thank all my loyal readers for always looking into our lives.  It is a feeling that is hard to put in words when I have many people who love to read about our life with Anna.  With this said I took a needed week off. 

I recently drove to work as I do every workday.  A long winding road with a lake view most of the way.  I take time to enjoy the ride as my mind races thinking of the tasks at hand when I arrive.  I have been giving myself more time in the morning because other drivers

I think this title is a source of stress for any mother.  Now add the Warrior to that idea.  A dressing room with your child in a wheelchair. How about your child that might not want to stay in the room, maybe crawl or look under the walls? Some of the walls do not go

I had the beautiful opportunity to experience the beginning of Lent, on Ash Wednesday at one of the best happy places I know.  St. Paul of the Cross Passionist Retreat Center in Detroit.  I went for the day and met many beautiful people.  A day of self care.    The most heart provoking was the teaching.