4th Birthday Photo Session

4th Birthday Photo Session

Wednesday, July 3, 2013

Humbled Ramblings

There's much for us to be humbled by... as quite a few fellow CHARGErs are suffering recovery in a hospital.  All are fighting a serious recovery.  Each day lately, we've had a name on our 'begging for help' list.  See... I'm really NOT a religious person.  I am very conflicted on the whole 'higher power in the sky!" personna that I've been sold.  I don't necessarily believe in that.  I tread lightly though because I don't want to disrespect another's belief!  I encourage others faith... my theory is, 'whatever works for you!'... I do not judge nor discourage others......although many hold beliefs that are very different than mine.  That doesn't bother me.  I think the more energy, in any form, you can conjure for another, the better to receive.  For example, one of the first CHARGE kids I was ever witness to was Reuben.  Reuben just endured a simple 29th surgery that didn't go so simple, as his airway was compromised with a blockage and for five or six days, he was in ICU in critical condition.  This is the CHARGEr whom online blew me away and gave me so much hope, courage, and love.  Reuben has had a really rough go this week, but he was discharged today.  My heart is full of hope for a quick recovery, but these last few days have been grueling.  I have to keep in mind that several of our readers do not understand the extent of our experience, our reality.  It's our job to give a glimpse, so there's more understanding, more empathy, whether it is resolved out on the road letting someone in a daze drift into your lane without much thought, or whether its is someone at a party explaining their reality to you and you're overwhelmed by their situation.  (this has happened to me, often.)  It's all in all a reflection of the good in your heart.  If you have good in your heart, and you follow-through with that, then get your ass down to donate blood.  Get yourself involved with charities that actually benefit families like us (FYI - we've had NO help, other than a scholarship to attend the CHARGE onference!)    I'm sorry, but I haven't seen March Of Dimes around in my little world.  I haven't seen many charities, at all.  But then again, there are many that are worse off than me. 

In any case, we are humbled by those that are still struggling.  Although I am not religious, I actually prayed for Reuben and Kalob and send my good vibes to Kane and those other yougin's still struggling.  My heart, love and good vibes are being sent for each and every CHARGEr (and any kid) fighting the good fight, whether its a CHARGE affliction or any affliction.  There's nothing more worthwhile than a kid fighting any fight - whether it's a genetic condition, medical affliction or a bully.  We should all gather around and surround our young with love, strength, encouragement and faith - no matter the denomination.  They all need us, whether you know it or not.  And we're humbled by all of those that 'get it!'

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