Embracing change creates somewhat of a freedom.  It does not, however, make the inevitable tolerable or less sad.  It does not make the gut wrenching idea of losing my daughter any easier, but, it does help in transitions and decisions.

Change is freeing if you are open and willing.

Change can bring about situations that are better than you could have imagined.

Change is a big part of my life.

Change is scary.

Change is inevitable in anyone’s life.

Do you remember that feeling you got as a child, waking up Christmas morning when the house is so quiet you think you may still hear Rudolph?  The idea of what could be waiting for you under the Christmas tree.  Part of my excitement was waking my sister and parents up to share in that first glimpse of “the goods.”  I can still feel that anticipation and excitement.  Unfortunately, I don’t  have this anticipation feeling anymore.  I don’t let myself get anxious or excited about much.  I do look forward to things, and appreciate vacations, parties, gifts, etc.  It’s just I don’t let myself get worked up in anticipation.  It may be a defense mechanism that unbeknownst to me, happened after Livia was diagnosed.  I mean, it makes sense.  Haven’t we experienced the ultimate let down?

This thought is sad.  You may be thinking, I feel bad for her, not to get excited about things.  Please don’t.  It’s been freeing.  In the past I would dwell over things like preparing for a dinner party.  I’d let myself think about everything that needed to be done to make the event absolutely perfect.  It would take days of thought even if it were just a few people coming over.  It consumed me.  I don’t have that anymore.  If I know something is coming up, like a trip, or an event, I prepare accordingly and do what needs to be done, but it doesn’t consume me like it once did in the past.  I don’t anticipate “this or that” happening, because if plans get changed or something comes up, what good does it do for me to fret about the “what if’s.”  This is freeing.

The ultimate change occurred on 7/8/09, when we got the horrendous news about Livia.  Think about that Christmas morning feeling, waking to no presents under the tree, and then multiplying it by infinity.  Then having that sick feeling creep up inside of you at least once a day, being reminded that tomorrow could bring a huge change that will change her life forever.  Will she even be here tomorrow?  Thankfully, I don’t even anticipate tomorrow, anymore.  This is freeing.

Livia recently got a gtube.  It was a decision that Jake and I had to make due to the recommendation from  Livia’s doctor, whom we trust very much.  This was a big change about to happen.  Were we making the right decision for her?  How could it possibly be time for her to need this?  Selfishly, I didn’t want a tube hanging out of her belly because I loved her perfect tummy.  We decided to move forward with the procedure to proactively place the tube for her benefit.  She also had an umbilical hernia repaired.