Liz’s Journal – Entry 12

The Last Two Weeks  3/5/2013

I miss Connor.  I really, really miss him. Two weeks ago today he left us.  At times it’s been so busy I can only focus on the jobs at hand but the ache and hole in my heart are there and I know deep in my soul they will always remain.  Our house is so quiet it’s unsettling.  Connor’s greatest gift was his fabulous sense of humor and even at the end when he couldn’t do much he could still roll his eyes and/or nod his head at the perfect time.  He brought us such joy! Loving him was so easy.

Throughout Connor’s illness I often thought of the movie “Ordinary People”.  I don’t want to be like Mary Tyler Moore’s character, so miserable, so unhappy.  Poor Timothy Hutton’s character never had a chance.  I know I won’t be, I can’t be…I will push myself through dark moments and find something positive to hold on to.

There have been so many beautiful things (notes, gestures, comments, flowers… and even miracles?!) that have happened the last few weeks I wanted to share a few with you.

Sunday morning, 13 hours after Connor died, Nick and Hannah were lying in bed with me and Scott had just taken a shower and was brushing his teeth in our bathroom.  He called out to Hannah to come have a look at something.  I warned her it might be an ugly blister on his feet from his Oxfam event.  She went hesitantly and then exclaimed “oh wow!” Nick jumped up to look and shouted, “That’s amazing!”  I had to see what all the fuss was about.  With the water running in the sink a perfect heart had formed on the sink drain.  Many of you have seen this on Facebook and I’ve just added to our pictures on Caring Bridge so you can all see.  It changed our mood completely.  Who knows why things happen?…spirits…energy…signs from above.  I won’t ever profess to have answers to life’s biggest questions but all I can say is that it was really nice to see and that memory and now picture will be special to the four of us always.

Later that day I decided to visit some good friend’s that had gathered for dinner at our friend, Cathy’s.  It was 6:30pm and already dark now that we have headed in to autumn.  I came out our front gate and turned to our car parked along Le Ferve Street (our house is on the corner of Royal Ave & LeFerve Street).  I noticed a white ribbon tied around the first tree I saw and then saw they were on every tree along the street.  I could see a big group of people gathered at the end of LeFerve. I ran back into our house, crying and asking everyone to come outside and see what I was seeing.

In late November, during Connor’s first chemo treatment at Royal Melbourne hospital, we chatted with an American friend who works at the hospital.  She was telling us that every December the people on their street tie red ribbons around the trees on the nature strip.  I loved this idea. I decided we needed to do this to the trees in front of our house.  We knew this was most likely our last Christmas with Connor and we all wanted to make it extra special.  We did this and it looked beautiful. I said we should then go out on Christmas Eve, late at night and tie matching ribbons around the rest of the trees on LeFerve.  So that’s what we did at 11pm on Christmas Eve night. Scott and Connor drove along as Nick, Hannah and I went up the street tying ribbons from tree to tree.  It was such fun!  It made all of us happy.  The next day, Christmas morning, was wonderful…everyone so surprised and pleased.

So now someone had surprised us with something similar. After hugging everyone in our house that had come outside, I drove up to the group of people gathered at the end of our street.  It was our neighbors…all of them: men, women and kids, a group of at least 30 people… most I don’t know at all except to say Hi to as I drive or walk past. I jumped out of our car and just hugged them all.  I was crying so hard I couldn’t even speak. I was overwhelmed. They were sooo loving and said they wanted to do something special for Connor as we had done for them at Christmas. I’m still not sure how they found out he had died the day before.

(I have also posted a photo of this on the Caring Bridge photos, so you can all see how beautiful it looks.)

The next morning, Monday at 4:30am, I heard the faint click of our front gate.  Sleep was elusive and I had just been lying there, thinking, remembering, trying to sort things out in my mind. Whoever had come in obviously had meant to come and go without being noticed.  I waited 10 minutes and then went to our door.  There was a small bouquet of red roses and a letter.  I carried the letter back to bed and when I opened it, tears just flowed down my face. It was a hand written note from Peter McNeill, Connor’s neurologist and brain surgeon.  This is what it said:

“Dear Scott, Liz, Nick and Hannah,

A life without Connor is difficult to imagine and I write to express my sincere sympathy now that this has come to pass.

I am very sorry I didn’t know Connor when he was well but the strength of purpose and sense of humour that I saw when he faced adversity told me of a young man of great character.  When I put that together with the parts of each of you that he was, I see a human being whose loss would leave a great void in your and many people’s lives.

I write to also express my great admiration for the extraordinarily positive way in which you have navigated this very difficult journey balancing remarkably well intensely close support of Connor while maintaining normality of life around that then adding to it experiences and adventures over the last twelve months which will provide unforgettable memories.

My advice when families are facing uncertainty and the possibility of disaster has always been to make the most of the time we have-as indeed I say we all should do-and I can honestly say I have never seen better use of time given the uncertainties you faced.

The support of Connor’s wider family and community has also been inspirational and his illness, though profoundly saddening, should be held up as an example of the huge number of positive things that we humans do for one another at a time when we are awash with negative stories of small numbers of bad people. The example of the support from his school community, for instance, has been uplifting.

As I said in my message to you Liz, last night, “no one has quite got to me (in a long career in medicine) quite as much as Connor and his uniquely wonderful family. I am sorry that I and my many colleagues could not do more to help you all.  It has been a bitter pill for everyone.  But I thank you and Connor for the privilege of sharing your journey and doing what I could. Connor will continue to be a powerful influence for good in the many lives he touched in his short years.

My family, who have been aware of your tribulations and Ruth and Nelley from my office, join me in this expression of sympathy.

May the positive memories of the last sixteen months help sustain you through this difficult time.  ‘Aeternum Fortis’

I am, very warmly yours,

Peter McNeill”

This letter has brought us enormous comfort, as you can imagine. I asked Peter if I could share it with our family and friends and he kindly said yes…although I’m not sure if he knows that meant Caring Bridge!

The days leading up to Connor’s funeral last Friday were filled with flowers, cards, food, gifts being dropped off in a steady stream. Scott’s sister Deb extended her stay, my brother Fred arrived, as did my cousin Jordan and our good friends Dave Harris and Vickie Nelson.  It felt so good having close family and friends here.  They have all loved Connor from the day he was born (and Nick & Hannah).  Their support and assistance throughout the week, the funeral, the days after were amazingly helpful. It was nice having Fred’s “physical self” here.  Connor was the same height (6’2”+) and hands, feet, hug all the same.

Father Tony gently led us through the planning of the funeral.  He probably had no idea, but quickly “cottoned on”(as they say here) that Scott and I actually enjoy planning an event. Luckily we work well together and enjoy the give and take of ideas.  Nick and Hannah joined us in every discussion and we were all pretty much “in sync” for what we wanted included and how it should all flow.  This took hours and hours but Father Tony patiently kept us to task. If we had to plan a funeral for our son, then we were going to plan it as best we possible could.

Brighton Grammar offered Connor a final “Beating of the Bounds” (a school graduation tradition) and Guard of Honour, with every boy from Year 7-12 and every Firbank girl in Y11-12, along with any other girl that wanted to participate would line Outer Crescent between the middle school and senior school, as the hearse passed through them. Celebrating Connor in this special and meaningful way felt right for many reasons. Connor loved BGS and embraced all aspects of school life. Also, since Connor’s diagnosis the school has been involved in every stage along the way. We decided to invite all of Connor’s sport mates from rowing, rugby, water polo and his house, School House to walk along with the hearse.  The clergy would lead the procession, followed by Nick & Hannah and then the boys.

Luckily, last year’s school captain and good friend of Connor’s, Patch Clapp was at our disposal all week.  He coordinated all the AV/slideshows and any interaction/involvement with the boys and girls, friends of Connor. We know he put his heart and soul (as he does with everything) into ensuring all went as smoothly as possible. We kept saying we couldn’t have done it all without him.

Good friends, Jenny, Anna and Alex planned and coordinated the Wake at the Sandringham Yacht Club. They put together beautiful tribute tables of Connor.  We didn’t know then but over 400 people came after the funeral. We asked the 8 Pall Bearers and great friends, sisters Holly & Emma to speak there…we encouraged them to keep it short but meaningful and to have fun as that’s what Connor would have wanted. They were all fantastic.  I will gather their speeches and the ones Scott, Nick, Hannah and I gave and post to Caring Bridge in a few days.

I almost asked in passing if we could “live stream” the funeral so our friends and family in the US could watch…when Belinda from the production company said “no problem”, it put me in such a good mood!  This has been so unbelievably wonderful for us (and I imagine those of you who were “with us”). To know you were watching “live” gave us a huge sense of comfort and made the distance between us seem not quite so great. There were close to 1000 people in the church and hundreds of you watching.  Our beautiful son would have marvelled at (but actually enjoyed), all the fuss being made over him.

I’ll post the link so you can see the Guard of Honour, funeral and program.  Technology is a wonderful thing!

And now we are slowly settling into to our “new normal”…which really has been evolving since Monday 12 December, 2011. A meeting regarding setting up the Robert Connor Dawes Foundation has been planned and we think we have our first fundraising event, “Connor’s Training Run”.  Connor “famously” ran from our house to the Mercantile boatsheds in the city in September 2011 (18km, 11miles) as a pre-rowing training exercise.  With little advance training and telling no one!  Nick thought this would be a good idea to do as an event and we love it!  Details are already unfolding and we even have a date: Sunday 15 September. These are the things that will help keep us going.

I rang Sarah Punch, Connor’s music therapist and told her we’d like her to find someone that could benefit from her weekly sessions and we’d pay for it. We can formalise it all later but it feels right keeping this going as it was so meaningful to Connor and us. She already has someone in mind. This felt good too.

I’m thinking this will probably be my last Caring Bridge update, unless there continues to be things worth sharing. Actually, there will be a  spreading of some of Connor’s ashes next Saturday…it should be very moving…so another story to come, if you don’t mind!

In closing, I was talking with Di Farrow this week.  She was here on the morning Connor collapsed and stopped breathing.  I told her I was still amazed he starting breathing again.  I thought for sure that was it, Connor’s end. Deb had begun CPR but was only getting started.  Di said, I know what it was…it was Maddie! (our ever-faithful, beloved 9yr old golden retriever).  Di remembers Maddie putting her face in Connor’s face while holding Hannah’s PJ bottoms in her mouth (she almost always has something in her mouth!).  Di said even the paramedics, when they arrived, had to push Maddie out of the way to get to Connor. Again, I have no idea how these things work but it is nice to think about and wonder, isn’t it?