As each year goes on with out Kennedy I’m reminded of how many people I’ve met and relationships I’ve built since her passing and its a sad reminder of the distance being built between the life we had when Kennedy was here and our life today.  But I can honestly say that I wouldn’t be who I am today if it wasn’t for her and her family.

Many of you are familiar with Kennedy’s story but for those that aren’t I thought today might be a good day to tell it again.

Backstory: Kennedy’s Mom, Stephanie and I went to school together but didn’t know each other.  We both found ourselves pregnant at 25 and blogging about this amazing journey to Motherhood.  Mind you this was long before blogs were even a thing.  Yes, go ahead, call us Pioneers 😉 So we instantly connected through the blogging community watching each other travel down a similar path.   Once I was in my last month of Pregnancy I wasn’t checking my friends blog as often, everyone (including Stephanie) was going into labor early!!!   I was jealous and 9 months pregnant, NOT a good combo!  It wasn’t until my Son was a month old or so that I had the urge to get back on and check Stephanie’s blog to see her beautiful baby.  I was expecting to see a blog filled with baby spam such as mine was. 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 xyz 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, if she was happy enough, she couldn’t help but smile.  That smile could make your heart do flips.

Early on in her journey, after reading her blog for the first time since Kennedy’s birth, I reached out to Stephanie.  I wanted to help but didn’t know how.  I offered photography services (although at the time I was an absolute amateur) I didn’t have anything else to offer her.  Lucky for me she took me up on it when Kennedy turned 1.  It was a milestone even the most hopeful of her many doctors didn’t expect her to reach.  So I packed up my gear and made myself a make shift portable studio to bring to them and headed to their home.  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 for some reason.  I walked in that door and my entire life, my entire soul was changed forever.  I was greeted with a great smile, happy voice and amazing joy.  I proceeded through the photoshoot as we smiled and laughed, man did we laugh hard that day.  Being pregnant you hear a lot of antidotes from people about kids. I remember repeatedly being told that the joy in children is seen through their eyes but I never truly understood the meaning 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. It was my greatest pleasure to meet up with them at Disneyland, street festivals, shows, etc throughout the following year.  They would share with me the struggles of bringing Kennedy places.  From the starring, to the rude or ignorant comments, to the downright disrespectful actions of everyday people.  My first instinct was to tell them to just stay home, don’t subject yourself to that.  You don’t deserve that.  But this is one of those times in life where you learn to fight past the fearful first instincts you have to just take the easy route.  Stephanie looked at me that day and said no way.  Those people are not going to take Kennedy’s only chance to enjoy life.  So they fought through the mountain load of stuff they had to bring with them to assist her anywhere they went, they fought through the ignorant people, and the constant state of exhaustion.  Kennedy saw and did things as any normal kid would.  Stephanie and Brian made sure of that.  The only difference was the massive amount of work it took from them to make those everyday things possible for her.  I will never forget it and it is always why I will never take for granted my children’s health.  Stephanie was always teaching me something.  Every time I was around her and Kennedy I walked away a slightly better person.

I tried to shorten the backstory quite a bit from my past blog posts.  But it’s important to mention that for the first year and a half they were never once given a diagnosis.  Kennedy’s condition was an absolute mistery.  So with that was daily treatments of symptoms they had no real clue what was causing them.  It was a very long and frustrating year and a half.  But FINALLY after a very long wait from some very extensive blood tests they were given the final diagnosis.  They were told that essentially Leigh Syndrome is very hard to detect and by the time the symptoms and tests finally start pointing to Leigh Syndrome it typically means its progressed and their journey is likely to end shortly after diagnosis.  But up until this point because it was a mystery there was so much hope, hope that this was a long life situation.  That once they finally got the meds down that they could sustain their care for her and she would live a long fulfilled life.  The diagnosis was suppose to be a guide for the best treatment not a road map to the end.  It was devastating news.

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 mean seriously?!?  I remember the day Stephanie told me what the doctors had told her.  I was so mad, so hurt, I wanted to punch and throw things.  I was so angry.  So so so angry.  Then as Stephanie and Brian always did, they showed me a different way of thinking about it.  They taught me to CHOOSE to not spend their time angry or fearful.  To spend my time with the positive.  So from that point on I feel like in every situation I remind myself of that very statement Stephanie made and to them I am so grateful.  Living life through the positive side in ANY situation is so fulfilling.  Kennedy lived a fulfilled life full of happiness and joy despite the horrific situation she was in.  That is ONLY because Stephanie and Brian choose to forget the negative and fight for the joy.

This is going to sound random but I promise I will bring it around so stay with me lol …..  Valentines Day is one of those days I feel like a lot of people dislike.  I hear people say all the time “why do we need a day to remind us to show our significant others love.  We should do that every day”  but the funny thing is that its a day that makes us stop and focus a bit more than we do in our everyday busy lives and celebrate our love.  It also sometimes reminds us when we are single that we don’t have that love.  But I feel like the anniversary of the death of someone you love is similar.  I often used to think, why do people remind themselves of that day I would want to forget it.  But I’m thankful for this day.  Not for what happened on this day 5 years ago but thankful for this time.  This time that I stop and think of her on a deeper level.  I think of her every single day.  But on her Birthday and on this day I really stop and think about her and I talk about her more on those two days.  So I choose to spend today filling up my heart with memories and the many amazing lessons of strength, perseverance, and the choice of positivity.  Because everyday I have the choice to wake up and be angry at all the things in my way, the things that happened to me.  But instead I see a photo of Kennedy and I am reminded that I too can give myself and my kids a lifetime of joy by choosing the positive.

If you’d like check out the blog that Stephanie started for Kennedy all those years ago 

these were a couple of the photos I took at her house for her 1st birthday! Hard to think that this was almost 7 years ago!

My experiences with Kennedy and her family taught me that photographs and the art of capturing people is a gift.  I learned how important a photograph is to a grieving family.  I also learned my place in this world.  I’ve always felt compelled to help others yet always felt lost and unable to help in some of the most helpless situations.  But with a camera in hand, a humble heart, and the understanding that I have no right answers,  I can help in a way I never quite realized before Kennedy.  I’ve learned that it isn’t just photographing people in their hour of sadness or upon a diagnosis.  Its about capturing the joys of life. period.  Without reason or motive.  What happens after that is not in my hands but as life unfolds these moments in life captured become treasures to those closes to us. In the years after Kennedy I’ve been repeatedly reminded of the fact that life is short and incredibly unpredictable. I’ve been able to deliver these everyday treasures to families dealing with unexpected loss all because of my experiences with Kennedy and her family. They are my constant reminder to capture life’s joys without reason except for the purity that joy is.  Every year I gain more motivation as I meet so many amazing people.  But Kennedy will always remain as the foundation for it all.  And Stephanie will always be the reason I walk through like with an open heart because with out that I may not have been able to learn as much through out the years.

 

Rest in Peace my little angel  Kennedy Mae Bonomo 8/13/08 – 1/8/11