Gendo ...after

Well...
I don't even know where to begin.

Getting to the doctor's office was an experience in and of itself.  I ended up calling the police non-emergency line because of a 'reckless' driver... you should never be in such a hurry as to intentionally endanger yourself or others with your driving, especially if one of the others is myself or one of mine.  (just so you know :))  By the time I arrived at the doc's office (to find that they had moved) my migraine had started.  Fortunately, the doctors where still in the same building, same floor, just in a new unmarked office.  :)  Little Mama was seeing the Geneticist for a follow up.  We have already had blood drawn twice to rule out chromosomal somethings or metabolic somethings (though in Nov. she was 'borderline' for several metabolic disorders according to the nurse).  note: when I say somethings it is not because I don't know what they were testing for, but because they were testing for several things.  Some things I'd never even heard of before but could explain all the 'symptoms' we see, but we were negative or normal for everything, with one exception and that one wasn't even off the charts 'abnormal'...  So now we have to do a $1992 test for PKU DNA.  I don't know why heel pricks wouldn't suffice, maybe because she is almost five???  And insurance may or may not cover the cost... (head shaking)  But we need to rule out/find out what IS going on.  She also needs a sedated MRI.  (I DO NOT want a repeat experience of our sedated ABR)  Fingers are crossed and prayers are sent already that we can find a facility where it will be a positive experience.  The one 'diagnosis' that would explain her small head size, developmental delays, hearing loss and vision loss is not what is going on.  The geneticist is 'very concerned', but then why could we not do this testing before??...  I guess we needed six months in between to verify and have a baseline???  The geneticist wrote 4 or 5 diagnosis as justification for the PKU DNA test (so insurance might cover it), but it was the letters of just one that overwhelmed me.  My heart is still overwhelmed today. 

By the time that Z-man saw his endocrinologist I was shot.  I hadn't printed out any of the information backing up why we were giving him an herbal supplement to reduce his estrogen instead of the anti-cancer drug that the doctor had prescribed.  Yet, the doc didn't provide any of the 'short studies' showing the benefits of the cancer drug for treating a non-cancer patient.  Let alone that the long-term effects in adults have been studied (and aren't good), but the long term effects in children haven't and won't be... Did I fail to mention that if a drug has a side effect, our family will get it!?!  But his response was if we weren't going to follow his protocol, why should we see him?  Well why had we been coming for the last 2+ years (with him not prescribing anything!)?  I thought it was so we could be followed by a doctor who could be an asset!  I left feeling like a failure as a mom, a failure as an advocate and EXTREMELY hungry.

I stopped at Starbucks and got coffee.  I stopped at Granary and got some Kind bars.  The kids and I could go on a little longer.  My heart was breaking, but I held it together and didn't cry in front of the kids.  At some point I might be able to let go and cry.

Somewhere as I was entering the 'open' road I turned on the radio.  EVERY song I listened to on the way home (on two different stations!) reached out and reminded me that HE IS WITH ME.  This was the first one.

I felt like breaking.  God knew.  He sent a song to remind me that He doesn't give me more than I can take. He doesn't say if you follow Him life will be easy, but that He will be with you.


I came home to more... kid chaos, what I will refer to as 'other' and the general buzz of life around our house.


It is truly non-stop.  When it takes days for us to figure out when/how to take a few hours away for a date before Mr. Incredible leaves for China...  But it is the life HE has given me and I will rejoice in it.  I will stand and fight for what I need to, advocate as best as I can, LOVE HIM in all things and rest in HIS mercy.

He has given us each child in our family for a special reason.  He knows the end from the beginning.  He knows what is going on inside of each child, inside of me, with each of us.  I will continue to seek assistance from earthly physicians, but HE is the Great Healer and holds each of us in HIS HANDS.  He could speak the word and we could be healed, but then my trust might be in me and not on Him, which is where it exactly needs to be.