Liz’s Journal – Entry 10

The Latest Regarding Connor  20/4/2013

In mid October of 2002 Scott told me he was taking me away on a surprise trip for my 40th birthday. We’d be away for 4-5 days. I didn’t know then but he had planned to take me to El Questo, an expansive ranch in the Northern Territory, a place we could get the feel for the real “Aussie Outback”.  Scott had organized for our kids to stay with good friends.  Connor was 8, Nick 6 and Hannah 4.  I knew they would be OK but I was still a little nervous, as I had never been away from them this long.  Before we left I wrote a letter to each of the kids for our friends to read to them while we were away.  I can’t remember exactly what I said to Nick and Hannah but I clearly remember what I wrote to Connor.  I told him that above all else I would miss watching him do his homework.  That may sound like an unusual thing to miss but it was so true.  Homework was never a chore for Connor.  He did it so easily and effortlessly.  He worked so efficiently and calmly.  I would scan his work and try to find a correction but that was rare.  It made me happy for him, a gift he had no idea he had, a gift I knew I did not possess. I can picture him now, so focused, so sure of himself…its still bringing a smile to my face.

Connor came home from the Alfred hospital 4 weeks ago last Tuesday.  Looking back to his seizures and the days immediately following I never thought he would still be here today.  He can barely move or talk now but having him with us makes me/us irrationally happy.  We’ve settled into a new routine.  We have a nurse here each weekday from 8-11.  They help give Connor his medication; feed him breakfast and sponge bath him.  Every few days they help me shower Connor and help him have a bowel movement (this requires advance planning and a fair amount of strategy).  During the day Connor has lunch and rests.  He still has yoga and music once a week.  He has also begun having a massage here weekly by a beautiful lady.  It must feel good and we are all about Connor feeling good and loved. Then in the afternoons from 3-6pm a nurse returns to help.  On most days we’ve been able to take Connor out for a walk and get some fresh air.

Connor’s friends continue to be extraordinary.  Rarely a day passes without one of his friends (or more) stopping in.  They happily take him for walks, help me move him if needed and just generally be good company to Connor.  They sit with him and listen to music, reminisce about fun times they’ve shared together.  It makes me feel good to see them.  It gives me an idea of the life Connor would be living if he were well. They are really great kids and I’m glad Connor has them as his friends.  They’ve started University now and are busy settling into their post high school life.  I know this has to be difficult for them (but they never show it here, they are always positive and upbeat).  I also know some kids just aren’t comfortable seeing their friend like this and don’t come around too often.  I completely understand and am happy to welcome those that want to come.

Lately we’ve been watching old home movies and I’m so struck by how gorgeous and photogenic Connor is.  His body, even from a young age: tall, strong, and tan. His big face: an ear-to-ear smile and bright blue eyes.  I find myself staring at these photos.  When I think about Connor growing up it’s rarely about my admiring his physical self.  From early on all I seemed to think about was his beautiful (and often stubborn!) mind.  I felt responsible in some way to help nourish it as much as possible.  Feeding Connor good books was always one of my happiest jobs, going to museums, shows and special exhibits were always a joy with Connor.

Sometimes I feel selfish.  I want to hold, touch and smell Connor as much as I possible can.  Most days I crawl right in bed next to him and he gives me a look as if to say “are you really lying down next to me in this already too small bed?”.   So I answer, “Yes, I am!”  He sometimes utters “Oh my God” and rolls his eyes but with a smile nontheless, which would be his natural response.  I have quite large hands and it’s embarrassing that so few males have a hand larger than mine.  My dad, my brothers and my sons all do.  I like thinking about that. I love putting my hand in his as we lie there, he really has such beautiful hands.

My Mom left last week after a nearly 3-month visit.  She extended her stay after Connor’s seizures by several weeks.  The week before she left she became very run down.  We aren’t sure if she has/had the flu or just the stress of everything going on here just became too much.  She couldn’t move without a lot of pain.  It was a busy week going between my Mom and Connor, trying to care for them both. I know she feels terrible for Connor and all of us…it breaks my heart too that she has to endure this when things should be so different. We organized a wheelchair for her at the airport and luckily she was able to make the long trip back to Hilton Head.  I’m not sure she feels that much better but I hope in time she improves.

A good friend dropped off the movie “The Intouchables”.  She said Nick reminded them of the carer in the movie and she is right!  Everyone unwell should have a Nick around…so much fun in spite of everything and so caring and kind and helpful.  Nick is a huge comfort to Connor and to me.  He really does make things easier for me.  Hannah is wonderful, of course, but Nick is very hands on (luckily he is strong enough to help with his big brother).  Scott is great too but he has a demanding job and can’t always be around.  There is something very special about the ease and natural way Nick is with Connor, its beautiful to watch. Sometimes I catch him standing at the edge of Connor’s bed before he goes to school or upstairs to bed.  He doesn’t say anything, just his hand resting on Connor’s arm or leg. The love on his face is so genuine.  I am reminded of how a parent looks at their new baby.

The outpouring of donations from all of our friends, work colleagues, school teachers and parents (many of whom we don’t even know) has been overwhelming.  At Brighton Grammar the boys have a buddy program in the primary school.  The mum of Connor’s buddy when he was in Y6 and her son in Y2 made contact with our friend organizing the fundraiser.  She said her son had such fond memories of his year with Connor.  That Connor was wonderful to her son, lots of fun and a great role model.  She said their family wanted to make a donation to help support Connor.  The amount they gave was staggering, beyond generous.  We had never met the family and I only vaguely remember Connor talking about his buddy.  It was special that Connor meant so much to this boy and all these years later they wanted to help. Last Saturday the boy and his mum came to visit.  Connor nodded his head and smiled, indicating he did remember.  This is such a nice story amongst everything.

Scott’s sister is here from Houston.  She is another fantastic support and genuinely loves Connor, her brother, all of us. I’m so glad she made the effort to be here with us.  It feels good having family around.

Over the last few days eating, chewing, swallowing has become much more difficult for Connor.  We have had to go to a thicker, smoother diet.  His chest sounds full…its more difficult for him to cough and clear it.  Last night he had quite an episode of choking and coughing, it was very scary. This is distressing.  The palliative nurse and doctor are coming this morning to assess whether Connor should be seen in the palliative hospital, even if for a few days.  As much as I don’t want him in the hospital I also don’t want him struggling here if we can’t help him.  This feels like we’re entering another stage.  Every time we enter a new stage (not headed in the right direction) I feel a foreboding a few days/maybe a week ahead.  I feel a tightening in my chest, a nervous grind in my stomach.  I can logically say I know where this is all headed but the reality of it is crushing. I simply love my son, I know that goes without saying but my life is immeasurably happier with him in it.  I also cannot bear to seem him slowly slip away, it is excruciating.

I wish I had happier news to share.  It also breaks my heart that Connor…so filled with a happy-go-lucky, laid back, wry sense of humour and fun is bringing sadness not joy to so many. He wouldn’t want us all to be sad and I must keep reminding myself and others of this.  We’ve been overwhelmed by the love and support of so many.  My dear Beaver Dam friends, none of us strangers to unfair loss at a young age, have been especially comforting…virtually all reaching out to me, some I haven’t been in touch with in over 30 years.  Holding me up at such a great distance, it means the world to me. These are the silver linings.  We all know life can be incredibly unfair.   But I’ve always told my kids that more things go right than wrong…I do believe this. I’ve wanted them to look at the positive and not focus on the negative, I couldn’t live any other way.  I must continue to hold that thought and all of your love close to me now.