Dear Sonzee,  Today at 1:08pm marked 4 years since you left this world. So much has happened in that amount of time, but it doesn't real...

Dear Sonzee, I have spent the last year trying to figure out how to celebrate your sisters 14th birthday and honor your Hebrew death date an...

Since 2015 the month of March has always been a difficult one.  I am pretty sure over the 5 March's Sonzee lived she was hospitalized at...

Dear Sonzee,  Today marks 732 days since you left our physical presence. It feels like an entirely different lifetime ago because that is ex...

April 16...we meet again.  3 years ago, today I was handed this piece of paper.  You were electronically signed 5 days ago, but I was bliss...

In 13 days we will  celebrate  the 3-year anniversary of Sonzee's CDKL5 diagnosis.  A day that no matter how much time has passed on a ...

When I signed onto Facebook this morning there was a notification telling me that I had 8 memories over the years "on this day". ...

Happy Diagnosis Day?  I am typically a fan of celebrating every inch stone, milestone, Sonzee-stone, what have you, so it only seems fittin...

It is 10:45pm on March 20, 2017 and we are in room 8128.  We do not normally face north so this is a nice change of view for me, instead of...

80% of rare diseases have their origins rooted in genetics, and 50% of rare diseases occur in children.  Yesterday was World Rare Disease D...

Over the past two years I have found comfort in the most unlikely places, in a world I never knew existed, with items I did not know how to...

Today starts another school year over here in Phoenix, Arizona.  The weather still feels like summer, so besides the fact that we have been...

I am not a runner by any stretch of the imagination.  The only relationship I even have to the sport is through an old pair of Nike sneaker...