Why him??

Tonight I am writing from a place of frustration and discouragement.  I often avoid my blog when I feel this way...but hey, it is part of the journey and tonight I need to sort through the hurt that I am feeling.   I am so in love with our little boy and that there is the hard part.  His sweet little face, his precious little smiles, the way he calms to my voice and knows I am his mommy.

Today we had yet another appointment downtown at the ortho.  Honestly all these appointments are really beginning to wear on us.  They require a lot of planning, rushing like chickens with our heads cut off,  and they take forever. We have had so many lately and I don't see them slowing down for a while.  Today we went for Eli's second set of cast.  The first set really helped at first, but after about 3 days we really began to see a lot of regression.  Our physical therapist really wanted to get another set on soon so that we didn't lose what had been corrected.

 At his appointment this morning the doctor mentioned wanting to do a procedure to cut/lengthen his tight heel cord. I knew this was very likely as it was very tight.  Then he said he'd like to do it today prior to the casting.  I really didn't know what to say.  I am no expert.  I have been warned about doctors wanting to operate too much and to beware...but it seemed rather non-invasive.  In fact, he said he could do it in the office without anesthesia.  We decided to go ahead and prayed for wisdom as we were making a quick decision. 

We rushed home, fed the girls and rushed back downtown to the hospital.  I couldn't watch and had to walk out and thankfully daddy held Eli's hand.  The good thing is that he didn't cry...the bad news is that he didn't cry. Clearly, he had no feeling in that part of his heel/ankle.  I stood outside the door praying for a scream...and yet praying he wouldn't.  Sometimes this journey still knocks the wind out of me. 

Some days I think if I could just wake up and Eli not have spina bifida...life would be perfect...almost as if I could live again.   I find myself angry and jealous of people who are living life "seemingly" easily.  People who have happy pregnancies and healthy children.  People who have babies who kick and move their toes.  I have lately felt the urge to walk up to random strangers and tell them how lucky they are that their baby can fan and spread their sweet little toes. 

If I hear one more time that taking folic acid will prevent spina bifida I may just scream!!!  If the genetic center sends me one more letter asking for an interview, our blood samples and offers to pay me for taking my vitamins...I may go overboard.  I...DID...EVERYTHING...RIGHT!  Yes, that is me screaming at the computer.

I often wonder what my life would have been like had I gotten pregnant and had four healthy kids...I cannot imagine.  I know God has and will continue to use our struggles to bring him glory.  I have no doubt that through his disability Eli will bring God glory.  Tonight...I just wish for easy.  I just wish normal.  I just wish it I could take it all away.