names

I have been struggling recently with worry, with the weight of a an unknown future, with fear of my own capabilities as a mother, with frustration and anger over others' offerings and reactions to me.  I also have this large sense of irony and of disbelief; how 16 months after Caleb's birth could we still have this much strife, this much unknown about his future and his present.  How can we still be on a rollercoaster?  And the biggest statement in my heart is that it isnt fair!!!
It really does feel like a perpetual rollercoaster and I am not a fan of rollercoasters.  I don't like the out of control feeling or the waves of nausea that can overtake me on a rollercoaster.  I have those emotions right now. 
 In the last month it has been one thing after another with Caleb:  hospitalizations, new diagnosis and treatment options, new tests run and new grim predictions.  I have been intentionally vague and guarded about his recent doctor appointments.  I am guarding my heart from others' viewpoints.  I am trying to prevent discussion that may get back to my little girls' ears and cause uneeded stress and concern.   And there is also a frustration that we still dont know much, that we are still waiting for answers, waiting for things to happen or not happen.  I feel as though I have been waiting for a long time and I am pissy about it.  I struggle with fear of his future on some days.  If the neurologist is correct our life, our future will change in ways I never expected or wanted.  So my heart is weary.  Physically our therapy schedule is tiresome and draining.  I am a stay at home mom who never seems to be home anymore.  Just last week I was begging for a snowday so I could just be home with all four kids for fun.   I am sure the snow will come soon, but to me not soon enough!
I am not sure where my faith is in all of this.  I know it is here but I havent faced it yet if that makes any sense.  I have just been in shock, in fear, in anger, in hurt.  I have been wanting a day to just go in my room and cry and feel sorry for myself but havent had the time or the privacy for that.  How sad is that!  But I have felt that way, God just give me some time to cry and vent and grieve and be mad, then I will handle this head on with strength and hope.  I know God can move me past the worry stage and the what if stage but I feel like I have planted my feet there for now. 

I have been reminded of  Caleb's name and of how Jason and I both really felt his name was given to us, directed to us by God.  I had been set on naming our son Pierce since before we even married.  Jason was set on Chadwick, a family name for generations, for our son's middle name.  Pierce Chadwick was the name we had discussed and appointed for a son of ours before we even walked down the aisle to wed.  Years later, we conceive that anticipated son.  Do you know we almost named him Bronco.  Jason wanted that name and I was just so happy to be pregnant with a son, we could have named him anything.  But then the pregnancy became scary and high risk and we both grapled with the uncertainty.  I had been reading Joshua, in the Bible.  We both felt the desire to recognize God's hand in our life.  We chose Caleb and then Rafe, Caleb Rafe, our courageous son who would be healed by God.  I held on to the meaning of his name, the promise of his name all those long months in the NICU.  Caleb of the Bible did not let fear or other's beliefs rein in his life, he chose to believe in the power of God.  And so in my heart in the last few weeks I have struggled with the irony of our situation now, the irony of my belief in Caleb's name.  Can I believe that God is more powerful than a lifelong medical handicap?  It is easy to say yes when that situation isnt about your son, your sweet child.  I can say that my faith falters, waivers.  I struggle in knowing if I am capable to walk out that diagnosis. Yesterday at church I began the process of letting go.  Of crying out to God, just crying out.  I want my son healed, fully restored.  I am tired of therapies, I am tired of doctors, I am tired of everything being so different and intentional and hard.  I am tired of worrying about the girls emotional struggle in all of this.  Tired of having to extend grace to others when I want grace given to me.  Tired of running here to there, tired of trying to decide who needs me more.  I want all of Caleb to be whole, and I want it now.  Do I believe God can do this?  Absolutely, I have seen him work many miracles.  Will he do this?  I dont know.  I dont know.  I dont know.  For me there is a relief in writing that sentence.  There is a relief in just admitting where I am at and allowing God to work out the rest.  I want desperatley to be able to look at Caleb and take him as he is now, to enjoy him as he is now.  I dont want to look at him and look for indicators of what is wrong, what might be wrong.  So that is my focus for this week, to just enjoy Caleb.  Can you imagine if we had named him Bronco?  Ha!