Saturday, April 13, 2013

Life is Precious

Life is precious and fleeting.  This is a heavy lesson to learn and it's one I've become keenly aware of since joining the parenting journey of a child with special needs.

Over the past five plus years I have met families - so many families - that are in some way impacted by a child with special needs.  I've learned to care deeply for their children and include them in my prayers and I know they include us in prayer, too.

Some families I've met in person, some I've only spoken to through long distance phone calls, some I've met only online.  It doesn't matter how we've "met" because I am invested in their families.  Their triumphs, their tragedies and everything in between.

Some precious children are very sick.  We expect that we will have to say goodbye to those children and pray fiercely for a miracle while also praying for a good quality of life while they are here.  It is sad when they leave us and that fact that it is often expected barely softens the blow of the loss.

Some precious children are stable and we are so thankful for stable, for it can be a wonderful blessing to have "stable" when living with a child with special needs.

Some children are defying all the odds stacked against them.  These precious children are proving doctors and tests wrong.  They are walking when they shouldn't.  They are seeing when test results say they cannot see.  They are now hearing after being told they cannot hear.  They inspire us to continue to pray and to believe in everyday miracles.

The fact is all of these children are changing people and the world around them for the better.  Often, as is the case with my daughter Emma, without even saying a word.

This week our community will say goodbye to a little boy, Gavin, who inspired so many thanks to his amazing mom who openly shares their family journey on her blog Chasing Rainbows.  This was unexpected and hits very close to home.  I know Gavin, I know Kate;  mostly through phone calls, facebook posts, blog posts and occasional face-to-face meetings.  Gavin is only a few days older than Emma and they have a lot in common.  Kate and Gavin inspire me and my heart has been heavy since I heard about Gavin's sudden decline.

The past 5 years have changed me.  I try hard not take the days for granted.  I tell and show my children each day that they are so very loved.  I celebrate accomplishments big and small.  I am inspired often to dig a little deeper and strive to become a better person, wife, mother.

Life is precious.  Life is fleeting.  This much I know.

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Kristina is the mother of two charming daughters and wife to a wonderful man who puts up will all her wild ideas.  She works to raise awareness of cytomegalovirus (CMV) and 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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