Fear

                 I suppose the title is pretty broad to say the least.  "Fear" could definitely be used widespread in relation to a rare illness.  I think fear becomes a permanent fixture within the walls of our "normal" daily lives with Neutropenia.  Today, Jan. 14th, was a pivotal day for us six years ago concerning Joeli.  Six years ago this evening Joeli spiked a temperature and our "protocol" began, or so I thought.  Being sent home with a severely neutropenic child with a history of fever scared me to death.  There's fear again.  I'd made the calls, packed the bag, waited in the waiting room...only to be sent home.  What sense did this make?!  Who does this?!  I don't profess to be a physician or know what they know.  I respect their education and I respect their drive to care for people.  That said, I know my baby!  I knew she was sick.  I knew she couldn't wait till the following morning to be seen otherwise we wouldn't have risked waiting in that emergency room.       
                                                                                                   
       At that point all I knew to do was take my sweet girl home in those early morning hours and hold her till I could reach someone else within normal business hours the following morning.  She slept off and on in my arms and I watched, prayed, sang, and trusted that surely they'd reconsider in the morning.  NO appointments available.  REALLY?!  I was encouraged by the lack of fever so agreed to an appointment for the following day.  I'm struggling for words right now.  The searing and heavy pain in my chest is almost unbearable.  I have to allow myself this week, these tears, this pain.  How I wish I was holding my sweet girl again.  You can't live through a situation like this and not consider the "what ifs"...what if I'd fought harder, could I have fought harder, spoke louder, etc...  Would God's plan for my girl have changed?  I can barely see my screen through the tears.  If you don't ever read my blog again, please know this:  You and your gut instincts MATTER!  They're REAL!  They are God given and don't EVER back down when you know you're right about your baby.  I wish my Joeli had been given that kind of time.  The time necessary for the fight.  I can clearly see His hand in my life, all circumstances included.  I can hear my sweet girl's voice, see the differences her life is making, and smile through streams of tears because I am so proud to be her mama!  Your children are a gift, treat them accordingly....don't ever be afraid to fight.  The fear that we are forced to coexist with doesn't have to rule.  Take it for what it is and redirect it.  Don't back down.