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!




 

There are days when I would give a small fortune for a break from the daily grind. There are days when I am honestly not sure I have enough gas left in the tank to even do a quarter of the work that is on my plate.  There are days when I honestly wonder how much longer until I get to go to bed...and I look at the clock and it is 9am... and then I know something is wrong!  I wish and hope for a change or a break to the pattern of our wonderful but hectic and often crazy life.  And then life presents the change and I see the grind for what it truly is - a wonderful, full, challenging but rewarding and deeply satisfying life.  Today Brien and I traveled to LA for the funeral of Brien's Uncle and father to his younger cousins.  Mark's life was taken in an instant - unexpected, and sadly much before his time.  Today seeing his two sons with brave faces and heavy hearts I felt sad and overwhelmed. I wanted to just pick them both up and take them back to San Diego and make everything better.  I felt sad that they wouldn't get to watch their Dad grow old or have a relationship with him in their later years.  I didn't know Mark very well and the last time I saw him was at Brien's mother's funeral just over 2 years ago.  It was a sad reminder of how life is too short and there are no guarantees.  It is also a reminder that every day - good, bad, crazy, ugly - are all gifts and we have the capacity as people to make them whatever we want.

And I know this... but there have been days lately where the screaming in our house is so loud and the tantrums are so fierce that I find myself exhausted before I even leave the house for work.  I find myself enjoying my office in a new way. I leisurely (but not too leisurely Websense :).. get my coffee and read through my urgent emails to ensure that the plates remain on the table and nothing comes crashing down.  (Work has been even more hectic than usual...and there is no end in sight.)  I find myself looking at the calendar and trying to figure out how we'll get it all done - our day-jobs, the soccer, swimming, skating, riding, therapy, medical appointments, Cecily's Closet stuff and of course - just LIVING!

So... I'm trying to gain perspective and take the sad events of the week and keep them in perspective.  I'm trying to remember that the challenges we are facing with Cecily are actually signs that she is making progress. She is hurting and she is feeling trapped and likely betrayed by her own body.  She needs us more than ever to help her get where she needs to go.  She needs us to help her communicate so she does not get frustrated.  Noah needs us to help him understand what is going on with his little sister and why she may act in ways that seem different and at times hurtful.  Cason needs his parents because he is just a little baby who needs love, attention, nurturing and kisses. Lots and lots of kisses! 

This weekend we'll gather together to celebrate my Dad's birthday - AND to celebrate the life that we are all living together as family.  We will not pretend that everything is perfect - but we also won't let the bumps and bruises take center stage over the triumphs that are taking place daily.  It is sad that it often takes death, sickness or events to give our cage a good rattle... but I think it is how we react to the rattle that speaks the most about what's inside.

We are going to take deep breaths. We are going to let ourselves off the hook. (or some of them).  And we are going to live life with optimism and gratitude for the blessings we have been giving.  And we will allow ourselves to get frustrated - but we won't allow that frustration to prevent the happiness that is hidden on the other side of what seems to be a grey cloud.

There are days when the daily grind will get us... but we'll grind on! Onwards and upwards!