Gulp

Friday we meet with the neurologist.  I just had to write out that sentence to see if it would seem more real after I read it in print.  This sentence has been running through my head all of today.  It still seem so unreal on different levels, even after seeing it in print staring right back at me. 
We have waited so long for this appointment,  It's been recommended, postponed, rescheduled, and now it is almost here.  It seem unreal because it seems so long in the making.  From the first time I saw Caleb when the doctors pointed to his tiny head and said this is where his brain bleed is and we waited and prayed.  To a few weeks later when they said his ultrasound showed some unusual things and we may be looking at brain surgery, what?  It was my biggest fear after the fear of his death of course, the fear that he would have life long major handicaps.  And we have been up and down this rollercoaster ride with him, from one opinion to another.  But we have been waiting for the year one neuro appointment and it is finally here.  What? It is finally here, you mean I may have answers on Friday?  Realistically, we already have some of those answers, other answers  seem possible but unlikely, others only time will tell.  We have seen so many other specialists in the last year I am not sure why I have placed so much emphasis on this one appointment.  I have a huge packet to fill out this week. I have had the packet since February, last minute Chris, yep that's me.  His birth history is all fuzzy to me, I was waiting on his medical records for some of the questions.  Other questions, we just didnt know the answer to yet, he wasnt developmentally there yet.  And mostly, I have answered enough questions in the last year, I wanted to table this until I had to deal with it.  Now I have to deal with it.  Stupid paperwork. 

I am on edge tonight, the kids are asleep,  the house is quiet, and I am trying to plan out this busy week, and try not to think too much about Friday.  Right now I am just in logistics for Friday: what to pack, what time to leave, what all can I do while we are up there, where are the girls going.  I am on edge because I know Friday can bring about some things I never thought I would have to face as a mother.  I mean really, the fact that I am taking my child to a neurologist is enough of a shock to my system.  I still am not ready for anything past that.  We are also trying to reschedule an eye appointment in while we are there, nothing is ever simple it seems. 

I know those of you in my life have had to listen to me waiver and falter, whine and question, and really just vent for the last year.  Just know that this is a big week for me, this Friday is the biggest deal to me.  When it was suggested as a specialist we should see, my heart sunk.  When it was rescheduled, my mind went into a tailspin.  And now it is here and I gulping big mouthfuls of air, trying to muster up what I need to face this.  We have seen many of the other predicted problems for micropreemies come to fruition for Caleb, sensory, vision, motor, speech, immune.  But he also beat the odds on other things.  Friday seems to be the day where we square off on this one issue of brain damage, nerve damage, spasticity.  ( I have seen a lot of westerns in my day, so of course it is a showdown, cue western music)  Either way it doesnt change who Caleb is or what he means to me but I guess it changes who I am.  I am sitting here in disbelief that my child needs all these interventions.  How could God possibly think I am capable and strong enough?  But in my heart I know, I am not those things, He is.   I dont have to be those things.  I can sit here on a Sunday night, preparing for the week and for Friday knowing that my role is a mother, a teacher and an advocate for my child.  The rest I can set aside and hope and trust that God is taking care of that.  I am not a healer or a miracle worker.  I dont have to know why, even though I struggle with asking that question often on some days.  I dont have to know why to mother Caleb or the girls.  I just have to know who, who am I, what is my role, who am I mothering and how can I do that correctly, and who do I need to trust for the rest.    I think right now I am still at the how stage though or the why.  How did this happen, why us?  I am really trying to focus on just being a mother  I dont have to label it any more than that tonight.  Not mom of many, experienced mom, tired mom, special needs mom, just mommy. 
Gulp, it's a big week.  It's a busy week and that will help.  Recognizing and admitting that this appointment matters, that this journey we have been on does have it's own set of milemarkers and signifcant stops along the way.  I am hoping for grace and compassion from our doctor team.  I am hoping for wisdom and understanding from all involved in caring for Caleb.  I am hoping I can mother him and allow God to work through the rest for me.  It isnt an easy place to be but it's the place I am at.