When Our Life Turned To Feathers - A Brother Lost To Epilepsy

Posted on March 01, 2017 by Amy Goller | 0 comments

When Our Life Turned To Feathers - A Brother Lost
            Sean Kennedy 23/10/85 ~ 22/6/210

June 22nd 2010 was a typical Tuesday - get up, go to work & then to my mum & dads for our family dinner. Yet this Tuesday would be one that will be with me forever

We'd had family dinners every Tuesday for about 20 years! My mum, dad, brother Sean, Grampy, Uncle Neil & his wife Lee. As we were spread over Adelaide we took it in turns on whose house it was at. This Tuesday, it was Mum & Dads. 

Sean lived with Mum & Dad after returning from the mines & working for another company here in Adelaide. His life had its fair share of struggles but he soldiered on & had an amazing network of friends & family. We were blessed with the most amazing family network anyone could dream of. Some say we were spoilt, I feel we just created a family of love & strength for one another no matter what & that's what made it amazing. 

Purple Day Epilepsy in Kids and Adults Blog

Since aged 7, Sean had Epilepsy. The cause was never determined but mum is convinced it was from a head injury he sustained when he fell from a wooden push cart when he was younger. 

He'd only had a handful of seizures his whole life. I remember him sitting at the table eating an icecream when he was younger. He began crying as it dripped down his hands before having a grand mal seizure. It was frightening to watch. 

Sudden Unexpected Death In Epilepsy Blog

Epilepsy never really affected Sean much, you couldn't see that he had it, you couldn't tell that he had it, it was just a condition that was medicated through tegretol & he lived a normal life. 

That was until June 22nd 2010. It was a Tuesday evening, I was at mum & dads when I went to see him up in his room. I knocked on the door but there was no answer. I left it & returned back downstairs. 

Mum wasn't home yet but as she arrived home & mentioned Sean hadn't put the vacuum away I thought it was odd as his car was out the front. I returned upstairs & knocked again. With no answer i slid open the door & turned on the light to a sight that I will never forget. Sean, all of 6ft something laying in bed, still, cold & lifeless. But peaceful, one hand on his heart & eyes closed. 

I can still hear my own screams for mum & dad, I can still see the panic & hurt on their faces as they came running into his room. I remember me begging the paramedics to please help him. They couldn't he had been gone for about 12 hours. 

It wasn't until months later when we received the coroners report which confirmed Sean had died from Sudden Unexpected Death in Epilepsy (SUDEP).

The days up until his funeral were filled with shock, hurt & anger, planning for something that we wish we weren't. But it was full of surprises; people we didn't know who were friends of Sean's, visiting with tattoos they'd had done in his memory, his closest mates had written a eulogy for his funeral & made us a photo album of their memories of Sean. 

I had written my own eulogy. Standing up there in front of hundreds of people who had turned out to remember Sean was one of the hardest things I'll ever have to do. I remember the viewing the day before, petrified to go in but when I was in there, I didn't want to leave. He was cold to touch, he looked too big for the coffin & mum & I took turns in holding his hand while Dad stood with us. 

Whilst fighting my own emotions, my fear of going to sleep & never waking up, the thought & paranoia of losing my mum & dad, I also hurt so much for them. I couldn't begin to imagine the pain they'd be feeling losing their son & to this day, I would give the world to take their pain away. I was fortunate to have the support from my partner, now fiancé Luke, but the heartache definitely put a strain on our relationship for a while. I was paranoid, I was anxious, I cried.. a lot. I would look for dead people in our local lakes which I'd later find out was due to post traumatic stress, diagnosed by a psychologist who helped me through. 

Then there were Feathers. Little white feathers. This is what would keep us in good spirits & hold onto his memory & his presence around us. Jane, a friend from work, told me that white feathers were little signs sent to us from loved ones in heaven, saying they were nearby. If it weren't for Jane, the healing process would've been so much harder. Mum & I believe strongly in the feathers. We've had some really wonderful experiences such as when I took my gramps who was 92 at the time, to see Sean & my Nanna at the cemetery & as we got into the car a tiny white feather floated in front of us and onto my bonnet, to being inundated with feathers only to pull up behind a truck full of chickens - not exactly heaven sent, those ones.

Sadly Jane who told me about the feathers lost her life suddenly & unexpectedly just this last September. I will be forever grateful for her sharing the feathers story with me. Early last week Nate was rushed to hospital with suspected meningococcal after being febrile, having an elevated heart rate and a tiny non blanching purple spot on his foot. While we were in emergency a tiny white feather floated between Nates hospital bed and Mum & I. The tests for meningococcal returned as negative. 

Having children is life changing. It brings joy & happiness, fear & anxiety. I suffered terrible anxiety with my eldest son Hudson & his sleep. Petrified he could go to sleep & never wake up, I'd place numerous dummy's on his tummy so I could constantly watch the rise & fall of his breathing. I would sit with the video monitor next to me the entire time he slept. Then when I had Nate, we experienced what we would later find out to be silent reflux episodes which thanks to Dr Google, I had convinced myself was infant seizures. Thanks to a supportive private Paediatrician, after Nates second 'episode' he admitted the both of us to a Neonatal Unit for a week of observation to ensure it wasn't seizures.

I've always made sure my boys know their uncle Sean. We talk about him often & I have his photo up in our house. I remember Hudson taking my keys once & seeing his photo & unprompted said 'Sean, Sean' over & over.

Death in Epilepsy Blog

My Son & Uncle Sean ( ABOVE )

We never really knew the risks of epilepsy or the likelihood that it could claim Sean's life at just 24. Because of this I needed to do something! I needed to help raise awareness of an illness that isn't often talked about. 

I started an Everyday Hero Page which turned into a family & friends get together to thank them for their support. Now, 6 years on, coming into our 7th, we have held 5 Purple Day Events raising just over $30,000 for Epilepsy Action Australia through a Silent Auction with the support of The Sussex Hotel in Walkerville & hundreds of donating businesses & individuals. 

I would have never imagined that we could raise such a large amount of money through our immediate family & friends & the generosity of the local and wider communities in their donations. 

I intend to continue to raise awareness for families out there with children suffering from this illness to ensure they are aware of aids that can assist in alerting when one has a seizure while sleeping. Becoming a mum myself I cannot fathom the thought of losing either one of my boys & I believe that with the right education, we can help families & individuals seek support through organisations such as Epilepsy Action Australia.  

If you or someone you know has been affected by epilepsy and wants to get involved, Purple Day is a worldwide event raising awareness for the illness. 

If you are in SA and would like to attend our event it is Saturday 26th March 2017 12pm onwards (silent auction concludes at 3pm) The Sussex Hotel Walkerville Tce, Walkerville Tickets are $25 each incl an afternoon of finger food & a donation to EAA. 

Remember, life is short, we only get one chance & you need to make sure you give it all you've got. 

If you want to follow the adventures of my boys who each carry some of Sean's gorgeous features & personality, head over to Insta where you can find us & more about Purple Day:

Instagram: @hausofhudson_and_nate_

lInstagram: @laurenclairek

Alternatively if you would like to support my quest for continuing to raise awareness and could help by donating to our Silent auction, I can be contacted at laurenkennedy888@gmail.com   

And for Sean

Here I am with you,

I'm there til the end.

Memories are calling

So farewell my friend.

'Bullet for my Valentine'

Posted in Epilepsy in Adults, Epilepsy in Australia, Epilepsy in Children, Purple Day, Sudden Unexpected Death in Epilepsy, SUDEP


Next

Previous

Leave a comment

Comments will be approved before showing up.