I like it when you're here

There is an overly quoted Emily Dickinson poem about hope--I am including it here, despite myself:

"Hope" is the thing with feathers -
That perches in the soul -
And sings the tune without the words -
And never stops - at all -

And sweetest  - in the Gale - is heard -
And sore must be the storm -
That could abash the little Bird
That kept so many warm -

I've heard it in the chillest land -
And on the strangest Sea -
Yet - never - in Extremity,
It asked a crumb - of me.

This poem connects to the conversation I had last night with Imogen and hence, my appreciation of its childlike simplicity.  Imogen has been strong for the past weeks until the dam burst last night.  Easter is her absolute favorite holiday (better than Christmas, Halloween, or birthdays, even).  James and Imogen usually decorate the house for the coming of Spring and both become very excited about the Easter Bunny's visit.  Although Imogen has entered tween territory (turning 11 next month), she strains to retain a child's perspective of the world despite the push forward by everyone around her--her peers, the media--pointing her ahead to become a young adult.  She leans towards a Neverland mentality. James and I encouraged Imogen to embrace her childhood by avoiding the use of devices and relying instead on her own reservoirs of creative potential. 

The combination of seeing her father for the first time in the NICU and his absence at Easter was enough to push her beyond her limits.  Right before bed last night, she asked me if I had fed canned food to our cat B (James's job to give her a treat of wet food every night to supplement her constant supply of dry food in the bowl).  I told her that I was too tired and that it did not make a difference. Imogen stormed into the kitchen to feed B her moist morsel, ran into the bedroom, snapped off the light, and hopped into bed. She was sobbing.

We discussed our fears last night which are similar--a fear of not knowing the future. I explained that her father was similar to Han Solo (Imogen has recently seen the Star Wars films) when he was frozen in that block of space-age material--we have to defrost daddy--he's still daddy in there, just suspended in time.  Imogen has always had misgivings about not knowing the entire story first--the anxiety of adapting to a new schedule or watching a thrilling film in which it is uncertain how the tale will resolve itself. We have to write this story ourselves and we do not know the ending yet.  We definitely have to get the characters down straight so I suggested that we take our fear and turn it into a mascot--that we should make a drawing and name this fear.  I have already named mine--Mr. Zed--not sure how his portrait will come out. 

All we can do is take it as it comes.  My latest dread is that James will not recover and he will have to spend the rest of his life in a nursing home. Our future story rests on getting James into the proper rehab program. That is my current focus as well as finding a way to communicate to James that he has to work hard now--he is responsible for writing his own story--I cannot help him with this particular aspect of his recovery--he has to find the resources within himself. My job is to communicate this to him--to be his coach.  I am open to any ideas of conveying the seriousness of this moment in time to James himself. I am thinking, we may need visitors in the NICU to rally him into more periods of time spent in consciousness.

I do not have an idea of how long he will remain in the NICU.  If you would like to visit with James (hold his hand, talk with him, read, listen to music together), please let me know--send me an email (jenniesheehan@gmail.com) and I will arrange a time for you to stop by. I have returned to work and leave James alone after about 2:30/3:00 in the day starting today and moving forward during the work week. My schedule may change at a day's notice if the rehab transfer becomes a reality but for now, the hours after 3:00 are open.

I will prepare you for your visit, if you choose to come.  James looks very different from the person you all know and love and receives treatment in the NICU.  Visits should be for those stout-hearted souls that remain positive and upbeat despite their own feelings of shock and sadness. It is not for everyone and no one will be thought less if they cannot do it or do not realize it until they are in the hospital and may need to leave. No judgement passed ever.

James remains in the same condition as yesterday. He has moments of total presence and lucidity but also, time spent completely unresponsive.

Imogen and I are keeping our feathered friend hope near to us--it is Spring after all.