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The Miracle of Cecily

9/29/2012

5 Comments

 
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Do you believe in miracles? I do.  I most certainly do.  I believe our little Cecily is a gift and a blessing and that she continues to prove the impossible possible.  BUT... and this is a big one...it is hard to always be positive. I have to admit that lately it is not natural. I find myself willing my mind to go from down to up, from frustration to appreciatiion and from just plain devestated to "ok".  Finding the sunny side is a conscious decision...and while I'm not giving up this attitude... I am pretty sure it took a beating over the last 2 weeks.  Before Cecily  I definitely didn't appreciate all the wonderful things I had in my life. Cecily forever changed our lives for the better. Everyone wishes for a healthy baby and until you have a baby with challenges - whether medical, behavioral, developmental or otherwise - i will risk offending people and say that I think you don't truly appreciate it. 

Over the last two weeks my "glass is half-full" - the "count your blessings" and "find the silver lining" way of thinking has seemed more cliche than true. I feel like over the last 2 weeks my heart was bursting with love and then broke into a millions tiny pieces - shattering my positive energy and taking me on a downward spiral.  I feel removed and distant from my own life - like I'm watching it happen to someone else from an emotionally damaged, fragile box.   I found myself fighting myself - not allowing myself to feel the way I was feeling for fear of what? For fear of feeling? For fear of disappointing someone? For fear of feeling like less than a worthy Mom? For fear that someone would think I was selfish or self-centered for having a tiny pity party? It all seems so silly but I just felt it was wrong to feel negative or dare I say hopeless? I normally don't allow myself to think this way but the stress was just too much.

Over the last 8 weeks we have noticed  changes in Cecily and many of these changes have been challenging to cope with.  The behavior with its ups, downs and tantrums has been exhausting for not just me - but the entire family.  The Doctor visits have been many and the results have been confusing.  We prayed for it to get better and for answers... and then we got some.  Careful what you wish for...we are just reeling from one of the worst hospital stay of Cecily's short little life. (Fort he record the care we received was wonderful - but Cecily struggled for many reasons during the visit).  The Doctors told us that  sweet Cecily's blood sugars were dipping to what is considered "dangerously low levels..."  She was diagnosed with yet another syndrome (Dumping Syndrome) - and we left the hospital with what can only be referred to as a stop-watch schedule of care that has Cecily returning to continous tube feedings via pump AND countless blood sugar checks every 90 minutes after a feed completes.  In short, it is around the clock care and quite devestating to Cecily's quality of life.  For the first time I was ready to call in the professional pity party planners and listen to the violins play...  AND THEN... the miracle of Cecily... 

Just when the Doctors insist that Cecily will need to have continous feeds (it's the only solution for dumping syndrome)...Cecily picked up a spoon (without being asked) and ate (without being asked) and she didn't stop! She ate and she ate and she ate.  What's better? She did it herself with a smile on her face.

Cecily has been making such strides developmentally and we are so fortunate to witness this growth.  To see her by her own volition eat dinner was all I needed to turn on the dishwasher and get a slew of clean glasses to fill.  The glasses (all of them) are now full again!  

Onwards and upwards!




 

5 Comments
Jay link
9/30/2012 01:18:41 am

Hang in there Rachel - you're a *great* mom.

Sending positive thoughts your way - from Mountain View :)

Reply
Anita
10/1/2012 12:25:25 pm

Loving you and wishing I was there. You are doing all that you can do!!!

Reply
Karen
10/5/2012 11:11:44 am

Anita is so right - you are doing all you can do. One day a time, my dear friend!!

Reply
Nicole
10/12/2012 09:19:32 pm

You are a incredible mother, you have taught all of us what it truly means to be your child's best advocate. You continue to amaze me and so does Cecily! She truly is a miracle!

Reply
Andrew
10/15/2012 06:19:56 pm

You guys are just awesome! Incredible FAMILY!!! Miss the Ackerly clan!

Reply



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    Noah, Cecily & Cason's Mom

    Follow the ravings, rantings, stories, and challenges of a Mom of three as she
    attempts to see everything with the glass half full! Who knew being a Mom could
    be so much fun and so much work! Warning... this blog does not come with spell check...

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