Thursday, April 12, 2012

Coming up for Air

Emma has been on spring break for the last two weeks so we've been filling our schedules with lots of fun activities.  Most days we have been visiting playgrounds, family and friends, taking long walks, and pulling out lots of toys that we don't always have time to play.  It's been a fairly blissful two weeks.

It feels really good to have a break!  I think Emma must have needed it since most mornings she slept past 9 am.  I still woke up early and used the time to catch up on phone calls and things around the house since when Emma is awake I really don't have any "down" time.  That is just a part of being the arms and legs and mouth for both yourself and a multiply handicapped child.

Wow!  It seems so weird to call Emma multiply handicapped because to me she is just my Emma and really isn't very complicated.  She is my little buddy that joins me on all my adventures, rarely complains unless we are cooped up in the house for too long (or if someone is eating chocolate without sharing with her), makes friends wherever we go, and giggles often.

The last two weeks have reminded me of how different our everyday lives really are from those with typically developing children.  The difference used to bother me but I've found myself less and less bothered by it over time.  Our life is rich beyond measure and I think that is the reward of traveling this 'alternate' road in life.  I never imagined that I would have come to this point of acceptance when we first started on our journey.  I never thought I would be able to move past the hurt and find the blessing in this road.  But it seems that is exactly what we have done and it makes me a Hopeful Parent now more than ever.

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Kristina is the mother of two charming daughters, Julia (6) and Emma (4), and wife to a wonderful man who puts up will all her wild ideas.  She started blogging to chronicle her family's journey that includes raising a child that has a profound hearing loss and cerebral palsy due to a congenital cytomegalovirus (CMV) exposure.  Since learning of the CMV diagnosis she has worked to raise awareness on preventing CMV exposure during pregnancy.  Kristina graduated from the national Partners in Policymaking program in September 2010 and is an advocate for disability rights and inclusion education.  You can read more at

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