Sunday, March 18, 2012

At little fun...

....can go a long way! It was wonderful to share the delight of her first trip to the beach.  Never have I heard her "say" so much in response to her surroundings.  She would just periodically stop, look at us, and babble away or giggle randomly.  We will be going back next weekend if the weather is nice.  And I can't wait for the warm tidepools we'll play in later this summer. 

Sunday, March 4, 2012


I am pleased to report I have found a job. Its my first one ever in the corporate sector and also the first one I've had in my adult life where I actually work with adults vs. children/teens.  Its an adjustment but I am excited to be able to provide an income.  Likewise, my husband is proud to be daddy-in-charge, taking care of all Evangeline's appointments, therapies and otherwise managing the household.

As my spouse and I switch into our new routines and new roles, there is an adjustment process.  For so long we've been "surviving" and the skills we used to keep putting one foot in front of the other during the very difficult times of diagnosis, NICU, job loss, housing loss, financial stress, shunt surgery and more were great to have....but those skills are not so applicable now that we are trying to really live instead of just survive.

In a rather profound conversation last week, Bj and I discussed how so often in US history, a soldier in some awful far-flung  place of combat, living in the mud and the cold...fearing for his life as well as the survival of the man fighting beside him, wishes for nothing more than to return to his home, his life, his "normal"...and when he finally makes it back limping, tired and relieved, he finds much to his dismay that he no longer knows how to live the way he lived before. He was changed by the trenches. The heightened awareness that allowed him to survive the enemy, the mire and the muck didn't help him at home... yet  he finds himself unable to shut that sense of impending danger off. He feels alone in a crowd.  He has forgotten how to live in peace.  It is a great American tragedy that this still happens to our soldiers today.

Likewise, even though Bj and I weren't literally in war, in the beginning we did fear desperately for our child's survival. We "knew" that she would be OK, but that didn't stop me from feeling compelled to get up in the dead of night just so that I could place my hand on her sleeping form and feel her belly rise and fall with breath. I didn't want to loose her or my relationship with my spouse in a melee of hospital visits, depression and fear.  Bj and I will forever be marked by the life we lived this past year but we made it through. Now our next challenge comes in adaption, in making conscious though gradual changes to how we think, and  being in regular communication with one another about what we are going through now and where we want to be in the coming years.  Because that is one thing you can never really see on the battlefield- The future is only a wish or a dream.  For so long, we survived but now we have a future.  One we know is out there even if its still not crystal clear.  During lent we are both fasting and seeking direction for ourselves and our family.  Hopefully, by Easter we will emerge with a clarity that helps us adjust to a life that maybe has a few surprises but also has some consistency, some predictability, some stability. 

I am sure that all moms and dads whose children have had prolonged hospital stays and complicated medical issues feel changed by the experience.  Each of us carry our own scars- each the story of a victory, a survival.  Finding "normal" doesn't come without its challenges but I know in my heart it can happen.  What gives me the courage to try and find it is my daughter's smile. All her hospitalizations have been my stress, my battle- not hers! She isn't bothered, afraid, or discouraged.  She loves life, sees the wonder of every new face, item, ray of sunlight.  For her BJ and I will lay our hyper-alertness down. We will do it day by day, one choice at a time and in doing this we'll wake up one day and find ourselves- all of us- in a beautiful state of ordinary.