I’ve written about Kennedy several times through out the past 5 or so years.  But I realize that I often assume by now everyone knows who she is but in the past year or so I’ve thankfully gained a great number of followers so I thought I’d sort of start at the beginning for those who haven’t heard of this precious little girl and her amazing family.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Stephanie (Kennedy’s Mother) and I went to High School together but didn’t really know each other.  But years later we both found ourselves pregnant and feverishly blogging about the exciting anticipation of our first born children.  We had a mutual friend who told Stephanie to check out my blog.  (This was my very first blog I ever made long before my photography blog, it was all based on sharing stories of being pregnant for the first time and later about journaling our adventures as a new family) Stephanie later sent me a little e mail to say hello and to share her blog with me and to just say hello to another Mom who was due almost at the same time!  We chatted a bit back and forth and then that was about it.  I remember reading that her doctors had estimated Kennedy to be 10lbs so they scheduled a c section almost 4 weeks earlier than her due date.  To say I was jealous was an understatement!  I was 9 months pregnant, the size of a WHALE, it was August in Southern California, and I was miserable!  It seemed like everyone was having their babies before me and I was going to be pregnant for eternity.  SO I stopped following her blog and stopped paying attention to myspace (lol yes, this was back in the myspace era!) Once I had Aidan and come home and got settled I don’t really know what it was but I found myself back on Stephanie’s blog.  Only to find the most tear jerking journey I hadn’t expected.  I instantly felt sick with guilt that I once was so envious that she had her baby before mine.  It now seemed so trivial!  The story is very long, complicated and filled with tons and tons of twisted roads and possible diagnosis followed by tests, and “oops, guess I was wrong she doesn’t have kal;fjiewoawejoiw syndrome” But to keep it as short and simple as possible, Kennedy was born nearly 4 weeks early because the doctors measured her head and estimated she was 10lbs and in breach position.  When Kennedy was born she was unable to breath on her own and she was 5lbs 4oz.  Although later discovered this early arrival was not the cause of any of the much larger problems she faced, it was still a major part of her early struggles.  Kennedy was later (1.5  years later) diagnosed with Leigh’s Syndrome or Leigh’s Disease.  Basically Kennedy’s brain was abnormal and did not provide her with the abilities to do much of anything.  Then once paired with the medicines that would help her to live she was unable to move her arms or any part of her body.  But let me tell you she was able to smile and to very softly voice when she was not comfortable.  Her smile was something I will never forget.

You might wonder where I came into all of this and how I have any part in this story.  Well, I had e mailed Stephanie to offer any sort of help I was able to and that photography might be the only way I could.  So once Kennedy turned 1 year old (a day every single doctor did not anticipate) she asked if I would take her photos to memorialize such a wonderful milestone in this journey.  To be completely honest I was a nervous wreck as I came upon their door that day.  I had been preparing myself to stay strong and to keep my composure.  I had anticipated great sadness and sorow.  I walked in that door and my entire life, my entire soul was changed forever.  I was greated with a great smile, happy voice and amazing joy.  I proceeded through the photoshoot as we smiled and laughed.  It was a wonderful shoot.  I’ve always heard the joy in children is seen through their eyes but I never truely understood that until that day.  Although Kennedy couldn’t move she had such life and wonder in her eyes.

From that day on the Bonomo Family and I became good friends.  Stephanie and I later traveled to Disneyland with Aidan and Kennedy.  We met them at the local street festivals, the christmas light displays, etc.  Mind you Kennedy had to be fed through a tube with a pretty intense schedule, she often had to have this machine used on her to suck out anything stopping her from breathing since she was unable to move her muscles in any real productive way.  But the Bonomo’s weren’t about to let that keep them from showing Kennedy the world, showing the world Kennedy, and allowing her to experience life to the fullest.  You’d think, well you’d hope and expect that the people around them would be accepting, warm, and understanding but instead they were often greated by negativity and mean people who would complain that they had to eat infront of them as their child had a tube in her stomach (mind you the tube was covered by clothing but the bag would hang from her stroller) people would make comments as they were out shopping about how she just lays there, asking them “what is wrong with her? she just sits there!” But did any of that stop them??? No!  I honestly can’t say I could have handled that.  I think we read so many wonderful stories about situations similar to this and we think “oh how wonderful” but they don’t often tell you about the everyday JERKS who really do and say such hurtful things that only make their day harder.  But I think it’s important to mention that through ALL of it, they kept their focus on Kennedy and HER quality of life.  Here is what Stephanie wrote on her blog when she first received her diagnosis:

“Hello Leigh’s Syndrome welcome to our family. We would like you to leave us, however, have accepted the fact that you are here with us for the long haul. We do not fear you nor are we intimidated by you. We have educated ourselves about you and know far more then you would like us too. We have learned to live our lives in harmony with you. You will not tear down our spirits. We will continue to live on and thrive in spite of you. You actually have allowed us to live our lives in such a way that we consciously seek out joy and laughter and we strive to live each day to it fullest potential. We do not feel sorry for ourselves or for our daughter Kennedy. This is going to be a tough fight but we feel like we have already won the battle!!!”

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

I think what I learned the most from Kennedy and her family is to live each day to the fullest and with a positive attitude.  They made each day to be filled with as much happiness as they could.  They were surrounded by terrible things each day and tough situations, tasks, emotions, etc but it’s like they just said to themselves “we can sit and be angry and bitter or we can skip passed that and just learn to expect it and accept it, then move on.”  I have so much respect for them for the strength it took them to take Kennedy out of the house and allow her the ability to live every day of her very short (2.5 years) life.  I could really go on and on about everything that is so wonderful about this family and every which way they’ve changed my life.  But every time I type and re read it comes out a jumbled, confused, unorganized mess of words!!!  I have no clue how writers do it!!!

I remember every time we went to Disney on Ice or wherever we went with Kennedy and the Bonomos. My heart would melt when Aidan would lean over Kennedy to say hello, it’s amazing how children just know.  My wild and crazy toddler would stop and be ever so gentle, soft and sweet with her.  Stephanie always talked about how happy it made Kennedy to be around other children.  She really wanted Kennedy to have a sibling, she really wanted to be able to see her two kids bond in such a special way that siblings do before Kennedy passed.  I was so elated when I heard the news that Stephanie and Brian were expecting another baby!  I think the entire community breathed a sigh of relief the day Collin was born!  He was healthy and literally just perfect!

 

Unfortunately Kennedy wasn’t able to hang on until his birth.  Kennedy passed away on January 8, 2011.  But her spirit and the sibling bond will always be there for Collin.  He is such a lucky boy to have a big sister looking out for him in heaven.

*We used these mason jars filled with peanuts at Kennedy’s memorial.  Stephanie and Brian used to call her peanut!  So we used that in their first family photo shoot with out her.

 

Kennedy will always have an incredibly profound grasp on many hearts.  I hope to keep her spirit and memory alive by always remembering and honoring her on this day.  I’m not sure if a day goes by that I don’t think of her in some way or another.  It could also be because I named my daughter after her (she is 2) and I am CONSTANTLY screaming ISABELLA KENNEDY BAGWELL!!!!!! stop doing that!  get over here!  don’t kick your brother!!!  LOL!  But really in all seriousness, it was a no brainer to name our daughter after such an incredible force of nature!  Ben and I wanted our kids to have names filled with meaning.  Something to give them inspiration and roots.  We wanted Kennedy’s name to live on through our daughter and we wanted our daughter to have a name that filled her with the inspiration of the little girl it came from. I hope that if you made it through this post (I know it’s long) that you talk about Kennedy’s story to someone else and that this little girls journey, her struggle, and her triumph will be shared with others.

So although I woke up this morning with a sad feeling in my heart it always makes me so happy to know that such a little girl with such a short time on this earth made such a profound impact on the world.  She couldn’t have done it alone either.  If it weren’t for her amazing (amazing doesn’t begin to cut it really) parents and their amazing support system around them she wouldn’t have lived the kind of life she did live and she wouldn’t have touched so many hearts and lives.  I encourage everyone to read Kennedy’s blog, you have to start from the beginning and work your way to the present day to get the full story but it’s nothing short of amazing and inspiring.  So today as you go about your day, think about a little girl who passed away 2 years ago today named Kennedy.  Tell someone about her story, tell someone how wonderful she was and how because of her story you want to live each day to the fullest rather than sit and count the reasons its hard to live with happiness and joy.  This is how we will honor this angel.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

And to my very special friends Brian and Stephanie, keep your head up and keep smiling today.  My thoughts and prayers are with you all day today.  I know how hard today is for you.  My hope would be that one  year on this day you will walk into Starbucks or to the grocery store and over hear someone telling another person about Kennedy and her amazing life.