monday is here

It's officially Monday.  I have made no deciscions about Little Man's treatment plan. Stike that, I have decided to wait to make a decision after the holidays.  Indecision and waiting are not action words but they are the actions I am taking right now.  I feel at peace about waiting to start in the new year.  The suggested plan was time consuming, highly structured and not manageable right now. I spent the week evaluating our schedule and our family dynamic. I also spent time in prayer and in quiet, not trying to force a decision. 
I carried a notebook around all week, documenting our time commitments, priorities, and family and individual routines.  I also kept notes, per therapist instructions, on Caleb's 'quirks,fears, irregularites'  Basically spent the week documenting what was abnormal about my son's behavior, movement, mannerisms.  I cried more this weekend than I have in a long time.  Behaviors and quirks I wandered about before make more sense when viewed through fresh eyes.  When you know what to look for, it is easier to see. 
Ja and I had late night conversations, it was easier to talk in the dark about our fears and sadness.  Caleb was a more agiated baby this weekend as well.  I think in reality, Ja and I were more attuned to his comfort level and his reactions to stimuli.  Before when he fussed, we would attribute it to hunger or the need for a nap or attention.  This weekend we were on the look for triggers and responses.  The list of these is longer than I realized and this troubles me. 

When we started OT therapy, I just wanted help for his feeding issues.  I wanted him to be able to eat table food without fear and gagging.  I did not think it went much deeper than that and I honestly believed it would be a quick fix.  A couple months, at most, of working to build up his comfort and skill level, I thought we would quickly relieve his feeding issues.  Now the reality of a more complex and life long issue is settling over me and it feels very heavy. 
We were given the clues to look for when Caleb feels threatened or stressed, when his nervous system is on overload.  I saw those clues come into play when Jason or I would try to cuddle him and my heart sunk.  I have realized this week that we have to meet his needs on his terms.  I so long to sit and rock him all night, to hold him close to me and feel him mold into me, into my body.  Unfortunately, his body cannot process that right now and so my feelings must not be prioritized over his needs.  It is hard place for me to be in as a mother. 
Other things seemed to line up, to make sense this week as we looked for clues and behaviors.  His constant mouthing of toys, his constant motion; all ways to provide a soothing sensory experience for him.  We have some suggested therapy options and we are hopeful they will work, that they will lessen his defensive responses.  They require being intentional in every aspect of his care.  We have been intentional so much already in his life, intentional for his gross and fine motor skill development and for lessening his spasticity.  I had hoped we are almost done being intentional and could just be.  It is hard to carry extra guidelines and emphasis in the back of your mind.  To use forethought in every activity from feeding to diapering and bathing to play and social time  Pick him up this way, hold him that way, talk to him this way, move him that way.  Aghh.  It became exhausting.  Activites and moments that were natural to me as an experienced mom now required new thought processes and adaptability. 

I made a list this week of things about my son that were abnormal.  How very disheartening.  heartbreaking, traiterish.  Yes, I feel like a traitor in some ways.  Because I love this little boy, quirks and all.  I love him as he is now.  with all of my heart.  I have to remind myself that identifying and admitting is the first step in helping him overcome this "issue" 
I struggle so much with not wanting his prematurity to define him.  He is 15 months old now.  And this is our next step, continuing his therapies, working to identify and move past his fears, one sensory issue at a time.  The first one being his fear of eating, chewing, swallowing.  That takes precedint over cuddling issues.  I know this because I know Caleb still has the ability to show and express love and to soak up love and affection.  One can clearly see that reality any time he is with his sisters or us.  My hope is that one day soon, I will get to just hold my son and be.  Be his mommy.  His comfort. 

(I know that I have not shared Caleb's new diagnosis with everyone and so some of you may wonder what I am talking about.  I really dont want to go into it, to label him any more than he already has been labeled.  Or spend time discussing his treatment plan and the options we have and are considering.  The easy explanation is that Caleb, being a micropreemie, was never able to fully develop his nervous system and we are seeing the ramifications of that now.  My belief is that therapy is beneficial and God is bigger than any diagnosis we have received or will receive.)
And so we work and we wait.  And one day we will get to just be.