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7.30.2012

CLEVELAND 3RD WARD.

I'll I have to say is WOW!!!!  My heart is SO full right now.  ...let me start off by saying how emotional I've been this last week...I don't think it helps that Cole has been in constant RAGE...I'm not sure how I thought it couldn't get worse, but apparently it can & it has.  I feel helpless because nothing is helping his rage right now.  Lately I've felt alone & frustrated.  There seems to be a pattern every morning, by 7:20am I have been telling the Lord that "I just don't think I can do it today", as Cole is scratching every exposed part of my skin off, pulling my hair out and throwing his food all over me, him and the floor...then I've got to struggle to change his diaper as he is kicking me and banging his head on the floor...then I realized I'm about to be late for work.  This is how our mornings go, and by 7:45am I'm crying as I drive to work & praying for the Lord to help me.  He always answers my prayers, because I always seem to make it through the day.  Today, I truly felt the Lord answer my prayers...we have met some pretty awesome people in Cleveland from our church and today we got the sweetest card with notes from MANY people who we've never met before with SO many kind & caring words.  They had a yard sale & donated the proceeds to Cole!  Yes, the "ugly cry" came out...and I was SO touched by the love of these women who said they are praying for us & think about us.  It was JUST what I needed.  I can feel the love of my Saviors arms around me & my family.  Not that that wasn't enough, but as I was typing this post...one of our ward members  (who is  an amazing guy & his mom is wonderful!)  dropped off a sweet card & also helped us out with our trip!  The experiences that our family has had this last 1 1/2 years has been overwhelming.  EVERY. SINGLE. TIME. when I tell the Lord "I just don't think I can do it today"....he prompts these amazing & selfless people to come to our rescue, to let us know he is STILL THERE, he KNOWS what we are going through & he WILL lighten our burdens.  Thank You to each of you for your love & support towards our family. 


 I did get a picture of Cole being nice this weekend, he's giving his puppy a "kiss".

7.25.2012

EXHAUSTED.

Well, here goes another summer that flew by, before we could enjoy it or even realize it was around.  Last year, we missed out on our summer for the anticipation of Cole's upcoming surgery.  ...this year, it's the anticipation of getting his 24 hour EEG done!  ...to tell you the truth, we are EXHAUSTED!  Mentally & Physically...it doesn't matter if we got a good night sleep anymore, oh, and how every muscle in my body HURTS.  Cole is getting bigger and beats us up in his "fits of rage".  The problem is, we think it's bad now...it's only going to get worse as he keeps growing.  I try not to think of the future and live life day by day...because having a Special Needs child only gets harder.  Right now, everyone thinks Cole is cute and his mannerisms are cute, different & child like...as he gets older his peers might be afraid of him or even worse treat him badly.  ...one of my friend's, friend's has a child with special needs and she said "being a parent of a special needs child often feels like your world is closing in on  you, when everyone elses seems to be opening up".  I have to say that she described something to the "T" of how I've felt many times before.  That's not to say I feel like that right this second, but geez, it would be nice to not be so fearful of everything in and around your child's life.  ...it's hard, and that's what scares me the most...it's GOING to get harder.  I used to wonder how the "mom's of special needs" children do it...it looked hard and I did NOT  envy it.  Now that I'm her...I know they do it because of the Love of their child...the child is  "the quarter back" & we are "the Left guard, Right guard & Defense"....we want to them "score" as we try to protect them every step of the way.   Anyways, let me get "out of reality" and share some pics of this cute little guy!

he's always got his fingers in his mouth.
mommy & daddy.
daddy saw mommy needed a "pick me up/comfort food".
don't worry, this is a "clean water drain".
anyone in there?
...and daddy & cole.

7.12.2012

BEST NEURO AWARD!

Ok, I REALLY think Cole's Neurologist (Dr. Deepak Lachhwani) should get the BEST Neurologist Award!!!  I know, I know...I rave about him ALL THE TIME.  But SERIOUSLY, he is the most genuine person I've ever met!  I sent him "Cole's Story Video" because I thought he might enjoy it.  Well, he did enjoy it and he took time out of his busy day to call me and thank me for sending it to him.  He got it on his birthday & said "it was the best birthday gift" and asked who had made it because they did an amazing job telling Cole's Story...which I was VERY VERY flattered, when I replied that I had made it.  Then we talked about Cole for a little bit & I gave him an update etc.  ...did I mention I LOVE this man!  Seriously, from the day we were thrown into this battle to STOP Cole's seizures, my faith in doctors became something of what might be called "a mother's worst nightmare".  I NEVER EVER want anyone to be disappointed in the care their child gets, especially at such a scary & devastating time.  Dr. Lachhwani brought "hope" back into our lives & I have to say that I thought every doctor was going to think I was crazy & not listen to me...but he did listen & he solved the mystery we have been trying to solve for 1 1/2 years.  I don't feel like a "number" to him or even a patient, I feel like a family member where he takes that extra time & energy to make things happen!  Thank You Dr. L for giving our baby a 2nd chance at life. 

I better pick-up the house, since "Tornado Cole" came through and got his little hands on BBQ sauce which is now all over the couch & has thrown EVERYTHING off of the counters etc. etc.  ...but I'm glad that he has the ability to trash the house, it's amazing how far he has come!