today

Today I am tired and have a horrible headache.  I am considering cancelling Caleb's therapy appointment but no, I won't actually do that.  Today we are going to specifically work on feeding issues so I feel like we need to be there.  He also had such a bad, nonproductive therapy yesterday that I feel like he needs this one  today.  He has been agiated over the weekend and into yesterday.  Fearful of the dark now, not wanting to be held but not wanting us to leave his sight.  His little arms and hands are bruised from all the blood draws and he is very sensitive over them.  All the progress we made in the last two weeks is gone.  He loves, adores, is ga ga over his PT.  Yesterday he crawled from her to me and back and just laid his head in our laps.  As soon as one of us tried to pick him up to comfort him, he stiffened and arched away from us.  He didnt go ga ga yesterday, he seemed exhausted.  His sleep patterns are starting to change, as in waking many times at night and so he probably is exhausted.  His room is next to ours, I hear him in there.  He doesnt cry, he just moves around in his crib.  He didnt want to play yesterday so maybe Friday and the weekend were overwhelming for him as well. 
Today he is gleeful again, animated and happy to see Vanny and Sweetie the cat, his favorite toy. 
Yesterday was a particulary hard day for me, exhaustion, stress, emotion, worry, all caught up with me.  Someone said something to make me feel better that in actuality  made me feel so much worse.  I must be raw emotionally right now.  The girls were bickering and I am so sick of the bickering.  Senny Sunshine is in an arm sling from a chipped elbow.  Geez, as if we needed one more thing.  All I wanted was to hear Ja's voice, I wanted to check in with him but he was unavailabe until he walked in the door after six last night.  I struggled on my own yesterday.  I cried uncontrollably while I cooked dinner.  I am sure I worried the girls.  They came in with hugs and promises to do anything if I would stop crying.  That made me want to cry more, I dont want them to have to carry any extra burden or worry.  Ja came home,  we had a yummy dinner.  Then, he and I sat on the couch by the tree and he just held me.  It's what I needed, it calmed me, he calmed me.  He said nothing, made no assurances, he just held me.  And I realized and appreciated once again the value of touch in a relationship.
Today I am feeling the need to focus on something bigger than I, bigger than our situation.  I could easily distract myself with things to do, or research, or with movies and books and tv.  Part of me is drawn to the distraction, drawn to the ease of investing in the drama of a movie or book rather than dealing with my own drama in any way.  I remember the comfort I felt last night being in Ja's arms, in connecting with him, in not feeling alone.  My marriage is bigger than I am alone but it isnt bigger than our situation.  The only thing to me bigger than our sitation is my relationship with God, my dependence on Jesus.  I am not going to describe it, I dont want to feel like I am sermonizing.  I just know that at this stage, in the waiting and questioning period of our medical drama, I need to trust something more than the science of medicine.  We do not have any answers, only more questions and routes to go.  I could drive myself crazy with this, and have some.  Today I have decided to just trust that God is working in whatever is my greatest need, he has so far.  And to calm myself with scripture and reflcetion.

In this blog post today I realize I have talked much about time, "yesterday, today, now, in the future."  All of these have consumed my time and my concern.  Is what happened in the past going to affect our future like it affects our now?  Is the behavior and conditions he had in the past and the ones he is displaying now, clues to a future diagnosis and prognosis?  How can I decipher those clues.  These thoughts have consumed me, ate at me.  And I need to stop them.  So I am working on that right now.  Right now I have a naked girl playing Barbies, a baby chasing a cat, a sparkly, twinkling Christmas tree, and a glass a coke to take the edge of this headache... and the hope and comfort found in God's promises and his stories.