Wednesday, January 4, 2012

A Little Bit of Everything

Let me first start by saying, tomorrow marks the six month anniversary of Kennedy's heart surgery.  It's amazing how far we've come from that point.  By far, the worst day of my life.  But here we are, six months later, feeling as if that was an eternity ago.  I will never forget that day, but the details surrounding it, are definitely getting fuzzy in my mind.  I never thought that would be possible.  Recently someone asked me a question about her surgery and recovery, and I honestly couldn't remember.  I had to go back and reference my blog post.  Now, here we are 6 months post-op and I'm planning her first birthday party.  I'm so thankful to all of the doctors and to the surgeon who fixed her heart.  I will never forget the gratitude I felt towards the surgeon the afternoon of July 5, when he told me that her surgery was over, and a success. 

Speaking of Kennedy's first birthday, it amazes me how far we've come in the past year.  When we first got Kennedy's diagnosis, I thought Down syndrome would rule our lives.  But in reality it doesn't.  In fact, I find myself writing less and less about Down syndrome.  Today it really hit me though.  I always try to focus on what Kennedy can do, and not what she can't.  But during Early Intervention, our therapist was really pointing out everything she should be doing at her age.  And, I have to admit, it stung a little.  Kennedy IS doing amazing.  But she's also behind other kids her age.  I know she'll get there, on her own time.  But, hearing the long list of things she should be doing, but isn't, was just a reminder of how hard she works for things.  And I'm so proud of the things that she DOES do.  Even if she's not crawling on all fours, or pulling up yet.  She'll get there eventually.  However, that doesn't keep me from fighting to get her the therapy that she needs, and is eligible for.  The state of Florida seems to be the worst these days.  One month ago, after being insulted by her PT, I requested a new one.  Several follow up calls, and one month later, not only did no one request a new PT as I was told they would, but now they're telling me that despite the fact that Kennedy was approved for PT in October, they no longer will approve it.  They're making budget cuts, and based on the evaluation that was performed when she was 6 weeks old, they don't feel that she needs any additional therapies beyond Early Intervention.  WHAT?!?!?!  They're going off an eval from almost a year ago???  Of course she didn't need services at 6 weeks old!  Needless to say, I'm not done with them.  I refuse to let this go.  They will not continue to deny my child the services that she clearly needs, just because they are trying to save money.  Not. My. Problem. 

And, last but most definitely not least, my little road warrior is about to head off on another journey.  Kennedy has certainly done her share of traveling and had her share of road trips.  Thankfully she's a champ and makes the most of every journey.  It helps that she likes hotels so much.  Tomorrow's journey comes with great sadness, as my Grandfather passed away this morning.  He was a wonderful man, and will be missed greatly by all.  I have many wonderful memories with him, and I only wish that he could have met Kennedy.  He absolutely loved seeing her photos and his face lit up when we were able to video chats with him.  I'm so thankful that technology allows us to go to such lengths.  While it's not the same as meeting her in person, at least he got to experience some of the true Kennedy. 

3 comments:

  1. Sorry for your loss Jennifer.

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  2. I'm so sorry for your loss. Keep fighting for Kennedy! I'm positive you will get through to someone!

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  3. Kennedy got the exact mama she needs. You are a fighter! I'm so sorry for your loss. Lots of prayers!

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