Our “why”

I remember the exact moment I saw this sonogram photo.  I remember the waiting room, and the exact spot I was sitting.  It was one month before she would arrive.  I remember the excitement and anticipation of actually holding her in my arms.  Seeing what she would look like.  I was ready.  This sonogram photo took my breath away.  It was the first time I really felt like I could see her face.  It was before the time 3-D sonograms were offered regularly.  I knew in that waiting room, at that exact moment that her name would be Livia.  There was no doubt in my mind.  Little did I know at that moment how fitting her name really would be.
The reason we started the Liv Life Foundation was to do something.  We couldn’t sit by and hope that a cure would be found by not trying ourselves.  Our hope was that maybe, just maybe that one dollar we raised would be the dollar to find a cure.  It was our hope.  It was fitting to name the foundation Liv Life.  We called her Liv, and our mission was to make the best of what we had and LIV life; to hopefully save her life so that she could LIV.  For those of you that know the rest of the story, you know that it just wasn’t in the cards for a cure to save her.  We gave it our best effort with the foundation, but what I know for sure is that LIVing life with her was the cure for so much, and for so many.
So here we are with a foundation still in place with her name all over it.  Livia means “life.”  To us, Liv Life means to enjoy, to be in community, to love other’s, to inspire through generosity and kindness.  It means to honor our days and be intentional with the time we have.  Livia taught us that.  There were days that it was hard to recognize, and there were days that were harder than other’s to really fulfill that intention.  Being a caregiver to another person presents challenges, both mentally and physically.  Having a child, or anyone with a terminal diagnosis is stressful.  LIVing daily with the time commitment as well as all of the “things” (equipment and supplies) you must have in order to LIV, doesn’t always come easily.  Most of the equipment and supplies that it takes for a typically developing child can be found at Target or on a quick run to the store of your choice.  Many specialized pieces of equipment that it takes for growing and changing children that are ultimately declining, takes a lot of work to find and to obtain.  We were very fortunate to have great insurance that helped us have an amazing palliative and hospice team, but not everyone has this.  Not only is it access, it’s rules and guidelines that many insurance companies require that takes a lot of phone calls, money, denials, referrals, appeals, etc. to even obtain a piece of equipment that a declining child needs in order to provide comfort and ease in their everyday life.
This is now our “why.”  Why we want Liv Life to continue to grow, and how we want to make a difference.  We will continue to support research in the hopes that a cure will be found.  We will not ignore that.  However, it’s time to make some changes within our foundation to help give other families an opportunity to LIV their days with their children just a little less stressful.  To give them back just a little more intentional time.  Our desire is to get into the community to help families with a child with a terminal diagnosis obtain a need in order to simply LIV.  We are excited that this is already happening.  We have made a connection with a local family that has been trying to obtain a car seat for their son since December.  Liv Life Foundation has purchased their car seat and will be presenting it to them at our Winery Fundraiser on June 9th at DC Estate Winery.
Her name was put on my heart at the exact moment I saw that sonogram photo.  That name will now carry on through this foundation that will, in turn, help others to LIV.  We can be so proud of our daughter for that.
For more information on the winery event and to purchase tickets to attend, please follow this link.