Elinor

I’m not a party man but Elinor loved a party.  She loved people and they loved her and we're here, not to mourn her death, but to give her a party and to celebrate her very happy and meaningful life.

She was healthy when she was born in Ottawa; there was no hint of her disability for a couple of years.  By then, we had moved to Georgetown and later Oakville.  She played normally with her older brother Jeremy at first and she gained - but then lost - language and meaningful hand use.   She was diagnosed around age 3 as autistic.  To help her brother Jeremy understand, we watched the movie Son Rise with him, which is about Raun Kaufman. a boy with autism.  In the movie Raun displays a stereotypical autistic trait – a constant repetitive action in which he spins dishes on edge over and over and over again.  The next day we found Jeremy and Elinor sitting on the kitchen floor, where Jeremy was trying to help Elinor.  He was trying to teach her how to spin dishes.  He’ll get a chance to rebut when he tells us about his Elinor.

As Elinor developed, and we read whatever we could find on autism, we eventually decided that she was far too social to be autistic.  There was no convincing explanation of her disability until the diagnosis of Rett syndrome when she was nine, by which time the worst of her regression was over.  The first definitive diagnosis was made in November 1985 in Baltimore Maryland at a International Rett Syndrome Association Conference, where there were 50-70 other families with similar girls seeking a diagnosis of their daughters’ condition and about 15 doctors trying to establish diagnostic criteria. Most families had never seen another Rett girl before.  There’s a group picture on the table of most of those girls – plus one boy who sneaked into the picture.  You can see Jeremy with Elinor at the back of the group. 

The diagnosis of Rett syndrome was made by a Canadian medical geneticist, Dr. Patrick Macleod, who wanted to be with us today but has to be in Ottawa.  Dr. Macleod is currently the Head of the Medical Genetics Department at Victoria General Hospital.  He has known Elinor and followed her for the 30 years since then and he has sent us some text to tell you today about Elinor’s contributions, especially to medical science, which   Jeremy will read in a few minutes.  The scientific papers on the table were written about her mutation, which is a special one even for a woman (almost all are girls) with Rett syndrome.  There are other more human contributions she has made too.

Her cousin Clare wrote: “We all loved Elinor so much and we feel that the world is a lesser place without her. We already miss her smile, her exclamations of glee, and the twinkle in her eye when she was up to mischief and enjoying life in the moment.  I will keep dear my memories of Elinor - holding her as a baby, helping her to walk as a toddler, her wonderful way of charging off somewhere to greet someone or to explore, her resilience, and her carefree way of announcing her presence in a room.  To make a connection with Elinor and to receive a smile and a twinkle of her eye in exchange, was magic.  And not many can claim to have made as a big a contribution to the world of science as Elinor did, either.         

As Clare said she enjoyed life in the moment.  She was innocent and joyful and trusting.  She also has a history and had a meaningful life and when you hear from Dr. Macleod about her brain cells, which live on in vitro, you'll know that she still has future contributions to make.

Apart from a few years in her mid twenties, she has been happy and enjoyed her life in spite of, or perhaps because of, her dependence on others.  In her mid twenties, we think that a growing awareness of her condition made her depressed for a while.  But after we moved to Victoria, with the stimulation of new friends and surroundings, she found her niche.  Besides enjoying her day program here, she went camping and traveled everywhere with us.  There are two mugs on the table.  They were given to us by one of her caregivers.  One mug displays a picture of me and Elinor and the photo was taken in Devon England; the other with a picture of Mary and Elinor was taken in New Zealand.  She loved to travel and meet new people.

I mentioned her non-scientific human contributions.  Several parents, especially those with newly-diagnosed daughters, told us how seeing Elinor running around at conferences and meetings, and clearly enjoying the people there, buoyed their spirits and made them realize that much more was possible than the devastating prognoses they had been given.  One parent recently wrote "You taught us that it’s OK, and actually quite fun, to take her to the bars once she turns 21 (Washington state).  My fondest memories of that are of times when we were at the restaurant & bar with your family. The happiness the 3 of you were jointly experiencing was obvious to everyone.  You were truly a family, with friends, thoroughly enjoying a meal out with friends.  There was no ‘special needs’ tag hanging over you, just enjoyment in the moment.

We could only be a family like that because Elinor was lively and happy and loved.  It's not just the proud Dad who is saying: I don't know anyone who was loved so well and by so many people.  And she loved them back.  She moved into Elivan, her own home, shared with Vanessa and two live-in caregivers, two years ago.  Staffing of the home is managed by Shekinah Homes Society as part of a larger intentional community.  She frequently spent weekends with us and when we brought her back to Elivan, she showed her delight in being "home" again.  It became clear in the last few months that this really was her home; she only visited ours - as any 39 year old would prefer.  

Lindsay was her home coordinator and she has been asked to tell you about the Elinor she and her  other loving and dedicated caregivers knew.  She also had a day program, or as it is now called, Community Inclusion.  Lynn, who lives in a suite in our home, and Lillian, who works for Phoenix nominally but really for Elinor, will tell you about their Elinor. 

I have often told people, in the past year, that it's rare that you get everything you hope for but don't really expect to get.  We did get it all and for that we’ll always be grateful to Lynn and Lillian and Lindsay and to all the wonderful families Elinor had at Shekinah and Phoenix, to her brother Jeremy and to all the friends who loved her here and when we were in Ontario.

Now I’m going to give Mary a chance to speak, followed by some members of Elinor’s fan club and, finally, Mary’s brother Tom who will introduce Michael Hemmings.

Gene


It is  all too easy for me to dwell on the fact that my heart is broken so I am trying hard to think of it as cracked, very badly cracked.  That way, there is hope that in time my heart will be glued together again – it will never be the same but I want to be able to enjoy the good things in life : Jeremy, Ginny and those two adorable little girls, Rose and Nina, and family members and many friends,

But today is not about me – it is about Elinor and Elinor loved “happy” so I will do my best to make it so.

Even though Elinor did not talk, she had ways of getting her message across.

She never complained and rarely cried but  there are many occasions to be reminded of her ways of communicating.  If she didn’t like the food I made, she spit it out (maybe that’s complaining?);  if she didn’t want to go for a walk she steadfastly stood still;  if she didn’t want to be held by the hand, even in the middle of a busy crosswalk, she shook us off – all with a smile.

But if we took her to a mall or Butchart Gardens or a walk on the beach, she would set off with enthusiasm -  not to buy anything or admire the flowers – just to be  with people.  

Elinor loved her freedom.  We used to save grocery shopping until she was able to go with us.  As I did the serious, boring stuff, Gene followed  her up and down the aisles and I could often tell exactly where they were because I could hear Elinor hooting and hollering.  She did a lot of hooting and hollering – in the pool, in malls, on the beach.  The words which she retained were “I go” or ”here we go”- words  which let us know that she was happy.  She had a goofy smile which she forced on many, even complete strangers; she had a wicked sideways knowing look when she managed to grab with her fast right hand anything chocolate especially  Kit kat supplied regularly by Gillian.

Amongst our happiest memories are the times we travelled with Elinor.  We went many times to England where Elinor was fussed over ( in spades) and stuffed with food by her aunt Ann, where she was treated to tractor rides and feeding lambs on Edward and Jean’s farm –– she lapped up all the different experiences, camping in the motor home,  visits to Chile., Peru, New Zealand, Australia, Hawaii, and many conferences in the U.S.where she loved to butt in on any conversation.  We also have good memories of visits to Ontario to see Gene’s sisters -  swimming in aunt Eleanor’s pool, walking in the woods in Guelph with Andy and Joanie  who made a beautiful quilt for Elinor’s bed. 

Elinor was my special treasure.

There are a few thank yous today.

First and most important, thank you to all of you for being here – from far and wide  -  England, France, Ontario, California and of course locally.

Gene and I looked after Elinor as a team.  I love you for that , Gene.  Elinor could not have had a more devoted Dad.   Jeremy has always been there for Elinor whenever possible and now we have Ginny and Rose and Nina to keep us happy and on our toes. 

Anne and Tom (and Clare and John and their families too) who live close have always welcomed Elinor and have been stand in parents when needed.

To all our family members – thank you for your love of Elinor. 

Dr. Johanne  Brodeur has patiently provided Music therapy for Elinor for 14 years and Dr. Macleod , the geneticist who diagnosed Elinor with Rett syndrome 30 years ago has provided constant support.  He was very good at taking blood samples from Elinor and a skin biopsy for research. 

Community Living Victoria in particular Ellen Tarshis,  Linette Baker and Mike Jensen have guided us and supported us for many years. 

 Shekinah Homes Society has provided the administrative support for Elinor’s home and is caringly led by Lynda Vallee who has established the principles and values which we endorse.  Thank you. 

Before we moved to Victoria  Elinor also had excellent teachers and friends  in Oakville.  In particular, the staff at the Church Street day programme; Anna who as a teenager provided after school care (with panache! ) when Elinor too, was a teenager and also Lynda, a faithful caregiver for several years.

There are three individuals whom I want to  mention.

Lindsay, the home coordinator for EliVan ( the house which Elinor shared with her good friend, Vanessa) has been wonderful.  In the last few weeks, Lindsay has been at Elinor’s bedside daily ( often more than once a day)and has done way more than could be expected of her to make sure that Elinor had good care. Lindsay soothed Elinor’s hands, washed and combed her hair and moistened her dry mouth. 

Also Lindsay set the tone for Elinor’s  home  and she and the whole team – Joan, Christina, Cynthia, Susan, Donna, Brenda, Sara and Charley created a real and truly loving home for Elinor.  Thank you all so very much.  Your love and care will always be special to us. 

During the day, Elinor participated in a day program run by Phoenix Human Services Association.  Elinor was in the CATS program for almost 14 years where she was nurtured and cared for by the dedicated CATS staff.    For the last several of these years she has been loved and looked after by Lillian.  Lillian  has taught Elinor so much and she has provided her with full, stimulating, happy  days – twice a week in the pool, music sessions with Johanne, and also Shelly and Mari, coffee shops, malls, walks, museums, visiting with her friends at CATS and much more.  Thank you, Lillian.  Elinor was so blessed to have such a loving friend.

Lynn has lived in the apartment in our house for 10 years and she helped to look after Elinor whenever Gene and I needed a break.  She has also taken Elinor out in the community often with  Lynn’s Mum, several times each week.  Beacon Street in Sidney was one of their favorite haunts – in all weathers.  It is Lynn who occasionally took Elinor to a pub and introduced her to chocolate guiness!  Elinor loved you,

Hopefully my ramblings have helped you to understand Elinor’s personality, her life  and  her happiness

Thank you for being you,  my sweetheart.   

You will always be with me.


Mary

Memories from a brother.

[At Elinor’s memorial celebration, I didn’t speak from prepared text, so I have taken the opportunity to insert a few things from further reflection on Elinor’s life after our memorial for her yesterday.  These additions are in parentheses.  I started by summarizing Dr. Patrick Macleod’s essay about her, titled ‘How we came to know Elinor and how she led the way’, which is to the right and details her contribution to medical science.]

Since I’ve known Elinor my whole life, the idea that she is no longer with us is still surreal to me.  She was always the most reliable person in the room.  She offered her love and joy without expectation or judgement.  She never let us forget the things that make us human: vulnerability, innocence, compassion, sensitivity. 

Elinor thrived around people.  Where I wasn’t always there for her as a brother, my heart is full for the wonderful, remarkable, special individuals who stepped up to help care for her.  Although she loved people, I also want to remind you that she had a fierce independent streak.  There was sibling rivalry between us: I may be one of the only people in this room who experienced her cold shoulder, which was truly chilling! 

Elinor would always strike out on her own with her distinctive gait, then after she put some distance between you, would turn, very slowly, with her giant grin, just to let you know that she could.  Her independent spirit makes it that much more of a blessing that she was able to live in her own home these past 2 years.

My fondest memories are of Elinor dancing at my wedding; from growing up it was what we called her ‘radar’: she could seamlessly navigate any curb without ever looking at it directly, keeping her gaze fixed on the horizon long before she even got close to where she had to step up.  [She was physically adept, but her true radar was in finding and locking on to people she loved, many of whom are in this room.  She also did this with strangers, in large crowds like at the Vancouver folk music festival; I could never tell what it was about certain people that she instantly liked; I think she had a sixth sense about people and could tell that they could see her clearly for who she was].

I think it’s important also to acknowledge the immense challenges she faced.  The full life she lived would not have been possible without the superhuman efforts that seemed to flow so effortlessly from our mom & dad, who also found the strength to be inspiring role models for other families, to give them hope for what was possible at moments that seemed hopeless to them.  Their dedication and devotion to Elinor (and to me) is tremendously compelling, and is essential to the narrative of her life. 

 Elinor had a good life, thanks to them and to all of you; and her spirit, now set free from its physical constraints, will be with each and every one of us, forever.

Jeremy

HOW WE CAME TO KNOW ELINOR AND HOW SHE LED THE WAY.

I first met Elinor in 1985 at a meeting in Baltimore Maryland.  She was among the first of the Canadian children to receive a clinical diagnosis of Rett .   Dr. Rett met her in Toronto and agreed with the diagnosis.

It was another 14 years before the gene, responsible for RTT, was discovered. In this interval, she and her family attended all the National and some of the International meetings to share her story with other families.

In 1999 over dinner that included Dr. N. Carolyn Schanen, at Elinor’s home in Oakville Ontario, she and I had a suspicion that Carolyn was “sitting on the information about the discovery of the gene responsible for RTT.” Despite our best efforts with a liberal amount of white (her favorite) wine we could not get Carolyn to share the secret.  The very next day the news was out. And we set about to find mutations in the gene.

By this time Elinor had become the “poster child/young adult” for Rett . Despite the best efforts of several laboratories, no one could find her mutation.  She was part of a national study of some 100 patients with the clinical diagnosis of Rett and still no finding.  As a result, her case became the first to suggest that there must be some other part of the gene that was responsible for her classic features of Rett .

Eventually a different approach identified her mutation, which as one could expect, would serve to overcome dogma in molecular biology and lead to the re-testing of other cases.  This has now become a matter of quality assurance in laboratories around the world which take to provide diagnostic testing for Rett .

Well, as one would might expect, by now Elinor’s “unique” mutation turned out to be the most important finding when understanding how the mutation affects the brain.

Elinor was also involved early on in our efforts to produce an eye tracking program to be used on laptop computers.  Elinor taught us how important it was to make use of age-appropriate visual rewards when the assigned task was successful. Somehow Brad Pitt comes to mind.

She then went on to participate as one of the first young adults to have cells from a skin biopsy grown in tissue culture to yield stem cells that became nerve cells in tissue culture.  These cell lines offer the opportunity to study an increasing number of candidate drugs to determine if any have a positive effect on the abnormalities of nerve cell function without having to go through the use of experimental animals, a process that had been our only option to date.

As a result of all of her contributions to the scientific efforts to understand Rett , Elinor is recognised on several levels.  Several scientific papers are based on her participation in these studies, and among those of us who are students of Rett, we look to her as our colleague in this endeavor.

Thank you now, and thank you later.

PATRICK MACLEOD MD
RETTS CANADA CONSORTIUM

Dear Elinor,

I want to tell you that you are so missed, that we all love you and that won't ever change.

You came into our lives in 2014 for one of the coolest things a person gets to do: move out of your parents' house and fly free!

I remember the first night you slept at your new house. I'm certain we were both a little nervous in different ways, but plodded on, eating spaghetti and meatballs for dinner and exploring this gorgeous house your parents made for you.

Since before you moved in, we all slowly got to know each other. You awarded each person you met with an eminent warm smile as we began our journey of teaching one another new things. You were invaluable in helping us to learn how to care for you, learn what your interests were, and what brought you joy.

You also taught each of us to be really, really careful about what we could leave on the counter. How many times did we put out a snack or muffin, turn around for JUST one second, only to find you with your mouth full, crumbs on the floor and a mischievous grin on your face?

In the mornings especially, you would often wake up with a content smile on your face, looking at us with those big brown eyes, as if to say, "Good morning, how are you?" You demonstrated how strong the unspoken connections between friends could be, as was observed between you and your dear friend Vanessa.

Though you were not a lady of many words, you had a knack of communicating merely with expressions. One of our most treasured "Elinor" looks was when you would accomplish something on your own - that look of pride was priceless. It was great fun to watch you as you would turn a door handle, or hit a button, or pick something up - and we were just as surprised and proud as you were.

Whenever we were lucky enough, we'd delight in your happy chattering, particularly when you were excited to go out, or hanging out at the mall, gleefully shouting out: "We go! We go!" And go we did. You kept us running, just as your parents assured us you would!

Yet, as full of life and movement as your days were, you also appreciated a good spot on the couch, some seriously classic music and a good story. You never seemed to tire of Anne of Green Gables or Stories from the Vinyl Café.

You have enriched our lives in so many ways and we are so grateful for that. You were a sun-loving, wind-loving, rain-loving beam of light. Thank you for your love, Eli Belle, and your friendship. Bye for now.

Lindsay McInnes

I'm so grateful and honoured to have had Elinor in my life for 10 years. Wow 10 years supporting this wonderful woman who just lit up the world with her presence.

Her life at Cats day program, which she attended since 2002, was jam packed full of heart warming friendships and  long-time staff who supported Eli to lead the best quality of life.   She would burst into her program with full gusto and would work the room and then she would go into the other programs and do the same.  It wasn't unusual for her Cats family to hear her before  they saw her! Elinor's here!  And then she would claim the couch!  She seemed to have perfected the balance of being active and rest!

Looked after that she was.. If I was not tending to her, her  friends at Cats and Extensions were. They watched out for her, took turns care giving for her and loved sitting next to her and often wanted to be part of her day!  One Cats friend in particular would only be motivated to go for a walk, if it was with her!

ot one day was ever the same!     With that infectious smile and her sweet nature, she had the ability to have people adore her. Her  active community life involved attending numerous music programs, frequenting many hotspots in Victoria and  good times at Esquimalt pool.  The community looked forward to seeing her and often asked how she was doing!  If there were people around, and she was moving...she was happy! Add chocolate into her day and she was even happier!  She loved being sung to and really appreciated when people acted silly around her.   With her crinkled up nose and her little mischievous smile , she was full of play....seizing moments in times and enjoying simple pleasures.

 She had the opportunity to form friendships outside day program  with  Kira and Nikki often meeting them for lunch and hanging out just as friends do.  This connection with these ladies went beyond my expectations.  Pure joy, comfort and love.

The time I spent with Ellie was so valuable. For a woman of very little words, she said so much.    You just had to take the time to listen… to be patient and see what she can almost do….and then help her achieve it!  I believed in you Ellie as much as you believed in me!  I'm so very proud of you.

I miss you my dear friend and…I will cherish the memories and have you in my heart always. I guess I now have to grow old without you!

I want take the opportunity to thank you Gene and Mary for being such strong advocates for her and  just being such amazing parents, the Elivan staff who were always so supportive to work with, to all her friends who touched her life and to Lynn who shared and adored  this beautiful lady with me.  

Lillian Magee (Phoenix Human Services)


Thank-you Lillian and Lindsay, and thank-you Gene and Mary for asking us to speak today


It is such a great honour to remember your daughter today. I have known Elinor for close to 9 years as her activity and respite assistant. She has been my good friend, my teacher, and a pure joy to know. I have been struggling with words, ever since I was asked to speak, because it seems that none are adequate to describe just how precious this one life has been. I find myself talking to Eli still ....when things are quiet....just like I used to. I guess you could call it a kind of prayer or a hope that she may still respond with one of her glittering, open smiles. I would like to read a letter I wrote to her, and maybe in some ways, she is still here in the people she loved and brought together.

Dear Eli Belle,

Thank-you my friend, for your beautiful heart. Your open, ready heart. You loved purely and deeply with every fibre of your body. Your love was tangible, active, and real. I am grateful for every moment I spent in its warm glow.

Thank-you for your humor. For your sneaky smile after you stole a tomato off my salad or when you went to reach for something you knew you shouldn't. I'll never forget your laugh when I'd tell a stupid joke (I thought you weren't listening to) or when I'd trip or make of fool of myself singing loudly in my car. We all loved the way you would sneak up on people you loved to give them a smile or a touch - Only to steal away again with your goofy grin.


          Thank-you for that smile. That mega watt - off the grid – dazzling fragment of of joy It was the best mood changer for a good ten mile radius, wherever you went. You would change strangers into friends, friends into best friends, best friends into family, and all of us into a community with that one simple smile.

         Thank-you for that community. You drew us all together. You were the touchstone for one of the greatest communities of people I have ever known. Your challenges drew us together but your spirit made us all friends.

        Thank-you for what you taught me. You taught me to trust and be vulnerable You taught me being human is a simple and humble gift, and to never take that for granted. You taught me that if I look closer, take my time, there is beauty everywhere. You taught me the small things are the big things....like chocolate cookies, and chocolate beer, walking on beaches smiling at strangers, the feel of water when it touches your toes, and the hand of a friend to hold.  You tauqht me what a well-lived life looked like. You taught me that the unnecessary things can melt away when you concentrate on what you are doing, right now, in this moment.

And right now, in this moment, I miss you. I really miss you.

Your loving friend,


  Your Lynn

Lynn Johnson

Thank you Lindsay, Lillian and Lynn.

I’m Tom, Mary’s elder brother.

A splendid afternoon, but as we all know – for the wrong reason.

Elinor’s Mum and Dad knew how much Eli enjoyed being in a crowd – she would be all smiles, and greeting you face to face, in the friendliest of ways.  We’re missing that so much.

Of course Mary and Gene have known for almost 40 years just what Elinor needed, even when she couldn’t say what she wanted or how she was feeling.

In this way Mary and Gene have been – are – the definition of parental loving care.  And as grandparents to Rose and Nina that loving care will undoubtedly be continued: the need (everywhere) is never ending.

Thank you everyone for your caring love, shown in cards, in person and you here this afternoon, or elsewhere.

My thanks, and yours I’m sure, to Mary gene and Jeremy for hosting

ELINOR’S PARTY

Please join me expressing our thanks.

I’ll pass along the mike to someone who has known the family since they arrived in Victoria/Cordova Bay – someone who has a profound experience of offering care and love when much needed – Michael Hemmings.

Tom  Wilkinson

_____________________________________________________________________

It is a privilege to be here today at this moment in your family's life, and in Elinor's.  I have been a priest since 1992 except for last seven years.  But now I am here just as another pilgrim.   I have no power, no secret knowledge, not much wisdom except that which has come, like for  everybody else, through trial, experience, and both joy and sorrow.

  If I know anything theological it is three:

  1. There is no God....that creates the world in which suffering occurs, or children die too soon or frankly some persons not soon enough. God, whatever that is , does not run the world:We do, to the limits of our powers, thank god. If so, then God has given us the capacity through our strength, mind and, beyond everything else, heart and soul to make a difference in the world, when we can. The Jews say that if you save one life, you save the world.
  2. If God is present in the world anywhere it is when human beings gather at times of pure joy and pure sorrow because it is in the act of gathering at those moments and if we are open to it, in love and kindness towards one another,  that god is present.  
  3. As rational, occasionally, as clever, and yes as spiritual, whether God exists or not, it is I think in our ability to remember the life of another person that we are at our best and at our most human and so if we remember and honour anything that was good and precious in another human being's life, that memory can be sacred guideposts  for our own journey

And elinor was both blessed and a blessing, 

A blessing for two reasons.  

because of her love for people, her love of a party and above all her wide eyed innocence in the face of the blunt world around her.  There is something indefinably beautiful about that and for those who had eyes to see the same were blessed by her.

She also was a blessing to science and the ongoing search for both the cause and the solution to Rett syndrome;  that is no mean gift.

She was blessed because of the above but also because she had a family that loved her. That is no mean gift back to her.

Michael Hemmings