I am

Trying to be authentic without being hurtful, my heart is heavy tonight.  My mind is racing but not with worry, not with lists of things to do or buy, not with praises.  My mind is racing with things I would like to say, of  responses I would like to give, of how I would like to defend and protect myself and my mothering view.  My mind is racing with things people shouldnt say, reasons why they say them, how I would LOVE to respond.  Thankfully, the lessons my mom and dad tried to teach me all those teenage years ago, those lessons have stuck.  I will not  "talk back,"  I will not respond in anger or sass.  And let me assure you this girl, this woman I guess, she still has a lot of sass.  What I have now I lacked in high school is class, self-control maybe?  NO actually it is just grace, grace to give because much has been given to me. 

Leading up to Friday was stressful for me, we had put such emphasis on this neurology appointment for our sweet little guy.  We have been waiting for so long for answers and my anxiety was high going into Friday.  Our answers did not come, only more questions and more instructions to wait.  We even have a new path to walk out is some ways.  My anxiety is so-so.  I cant say it is gone, erased but it has eased in some ways.  That one appointment was not the one and only appointment that would forecast our son's future and prognosis.  Friday was just the first of a few appointments we will have with neuro.  Intersting turn of events for me, I was hoping to cross that specialist off our list of places for a former micro-preemie to visit.  I wish we knew more, I wish we were not chasing down more possible diagnosis.  I wish we had not had to schedule more tests.  I wish some of those tests were not already in the process. 

Caleb had blood drawn on Friday, it was traumatic for both of us.  As I held him down and they dug around in his tiny little hands and arms, I saw all the progress we had made in the last two weeks of intentional massage and trust building just disappear.  I couldnt stop his tears or mine.  I know the blood draw was only moments of his life and it was necessary.  I also know that my little boy struggles very much with sensory issues and feels very defensive about having his arms and particulary his hands held.  His trust was broken and I helped in doing that.  I know if you do not have a child with sensory issues you may not understand this and think I am being overly dramatic but let me assure you I am not.  Caleb's sensory and defensive issues are huge to us, they inhibit his play and his abilty to self-feed or explore with his hands.  I was more concerned for that on Friday than on what the blood work might reveal.  I was also more concerned over the timing of the scheduling of the sedating for the MRI than of the actual results of the MRI.  I didnt want the sedation to cause more trach issues or more oral motor issues for a boy who already has such issues with oral-motor.  The results of the MRI were secondary to the immediate need to protect him, his airway, his fear of anything near his mouth or throat. 

My sweet little boy, I love him so.  Our neurology doctor was very kind but we did have to go over his birth story, my pregnancy complications, our hosptilizations.  It is hard to believe it can all be condensed on one side of a medical form.  It is so stretched out in my mind, so complicated.  The doctor also wanted to know what I felt was "WRONG" with my child.  No mother should have to answer that question.  How do you catalog your response, how do you justify it when part of you feels it is a betrayal to admit anything is abnormal or not quite "Right"  with your child.  Our doctor was patient and gentle in his questions and responses.  He did not rush me and he brought me alongside his thoughts and medical directions.  I am more accustomed to a list of doctor's orders and a time table to fullfill them without much time and patience for discussion and questioning.  Neonate clinic is abrupt, rushed, clinical.  Neurology was patient, compassionate, and informed.  I am so thankful for that treatment. 
Over the weekend I have felt the need to protect myself, defend myself.  I even wanted to go so far as to write a list of responses I thought would be appropriate to say to me.  I often have them running in my head during conversations or shorlty after, what I would like to say, what I really want to say, what I meant to say, what I shouldnt have said. Also, what others should have said to me, what they should not have said, why they dont understand what they said was wrong, etc..  

 I have been mulling over this blog, wondering if I share too much or not enough.  I will admit that I am sensitive, I have always been.  I used to hate that about myself, condemn myself for my sensitivity.  I have come to appreciate it and view it differently.  Sensitivity can be beautiful if not abused, just like any superpower.  I can be sensitive and not be easily offended or too self-aware that I become prideful.  I can be compassionate to others because I feel things on a deep level.  I believe more people should be authentic and vulnerable.  I strive to be authentic, real, true to my feelings. 

And so I am going to be honest, risk being criticized or misunderstood and say this, my true feelings are hurt.  Hurt,not by any one person or comment, not  hurt by the overal situation.  Hurt by generalizations and common practices.  I have a wise friend who says people feel a great need to rescue others.  We want to make others feel better, sometimes because we genuinely care, sometimes because sadness or pain make us uncomfortable.  Often times we rush into statements without thinking, I have done it, may even be doing it now.  But I am hurt, by people, by statements that tend to deny the reality of my current situation, statements that refuse to allow me to feel what I feel in the moment. 
I cannot deny that our situation currently is a child who was referred by several doctors, not just one, to a neurologist.  I cannot deny that our son lags behind developmentally in every aspect.  I cannot deny that our son does not speak, does not eat like a baby half his age.  Half his age.  Not 3 months adjusted, but half his age.  I cannot deny that every test he has done developmentally, he has had significant delays across the board.  I cannot say he is just doing just fine when he is not.  Please do not expect this from me anymore.  Please do not chide me or dismiss me when I say yes I do think something is wrong with my son.  It is a most uncomfortable statement for me to make as his Mommy.  I feel my own mommy guilt from saying it, my own traitorish spirit, I do not need your guilt heeped on to my own.  Please do not question my faith or my prayer life or my belief that God is bigger than anything else I know.  I know the truth of Jesus in my life.  I   do not need reprimands for my lack of praise.  I know more than anyone how far we have come.  I felt my son stop moving in my womb, I knew the day he would need to come out.  I watched him have machines breathe for him, I know how far he has come, I know what God has done.  But I cannot deny the reality of our current situation.  I cannot deny that we need, yes we needed a neurology consult, a genetic consult even.  I cannot deny that my son has severe sensory and fear issues. I deal with them daily. 

 I know now that I am talking back, I guess that is still in me.  But I am not feeling the need to slam a door, so progress from my teenage years.  I know I am on emotion overload tonight.   I just feel I am at this place where I cannot deny the reality of our situation.  I am thankful I have so many people who care for us, who are involved in our lives, who have been on this journey with us.  The truth of my situation is that I can not say with certainity if my son has developmental delays that will in time correct themselves or if he will eventually plateau in development.  The doctors have said that they cannot give us that answer yet either.  The bigger truth is that I know that no matter my situation, my family's situation, God is bigger and God is in the details.  The truth is that I need the people in my life to take me as I am, take us as our situation is now.  Right now I am a mom who is adjusting to having a special needs child.  I am a mom who is struggling to meet the needs of each child, to determine which need comes first.  I am a mom who is realizing that mothering more than one child is a balancing act.  I am a mom who needs a good cry, needs to process some things, needs to work out her own faith issues.  I am a woman who is sensitive and vulnerable and authentic.  I dont need to feel better about my situation, I just need to be truthful in it. 

When I mouthed off as a teenager, my mom made me do dishes, I hate dishes.  If I have truly offended anyone, please tell me and I will come and do your dishes.