Go to Denise's Web Diary - Part Two
Go to Kessia's Home Page
We have been very busy this past fortnight, mostly battling illnesses (all three of us). I'm now close to loosing my voice after a bad 'flu and Josh is getting over a nasty cough and cold. Geoff is scraping by.
But, we've continued to do a lot! Things are moving along briskly at Rainbow Cottage, nothing we can lay claim to ourselves... it's all thanks to our wonderful team of volunteers. For example, the place was a madhouse on Saturday. We heard there was:
* Belinda and the Ocean Grove Social Club putting in the playground we had donated by Playspace, involving siting the playground, digging 13 holes, and cementing the playground in.
* Belinda's husband Lance doing some electrical work about the place, including installing power for a fairy fountain and fairy lights for the garden.
* Thelma and a friend planting some of the plants they had donated by a local nursery. They have another friend lined up who is donating 1,000 bulbs next spring.
* Russell who is installing a computerised watering system.
* Terry who is a marvel, completing a slew of odd jobs about the place.
... and Russell is the only one who is getting paid to do this work. We are continually humbled, thrilled and amazed by this wonderful group of people. Paul at Home Hardware said he's received a heap of donations from the letters he sent to his suppliers --- we have fairy statues, dinner ware, cleaning agents, tupperware, mulch, soil improver, and other things I can't remember. It was too overwhelming!
We are getting ourselves organised to head to Ocean Grove this weekend for school holidays. I have bought wall prints, bath towels, doonas, mattress protectors, etc so we will be rather loaded down.
The two highlights will be the visit by Ronald McDonald House Charities representatives and our Open Day on 16 July. So far we have reps from Leukaemia Foundation, Andrew Love Cancer Centre, Very Special Kids, Bellarine Palliative Care Service, Ronald McDonald Monash House, and Ronald McDonald Parkville House seeing the cottage. We are very pleased with this turn out since these are the major agencies we were wanting to partner with. Each has daily contact with families who would benefit from Rainbow Cottage, and most have a child focus.
I have also been busy finalising a stats report for the brain tumour advocacy workshop in July. The group put out a press release that got a run in a few papers and radio this morning --- a small victory since they have been sending out numerous press releases about the workshop hoping to gain some promotion with no luck until now. Plus it made me sound pretty good!
There has been many instances over the past fortnight where I have been close to tears about missing Kessia which rises out of the blue.
Last weekend we were lucky enough to have Kessia's friend Hannah for a sleep over, a few days before she left for Canada. We took her to yum cha for lunch because she likes Chinese food, and it's one of our favourite meals. Kessia loved yum cha particularly, while Josh hates Chinese restuarants! So as we walked in to the restuarant, I was suddenly overcome by the fact that I was about to ask for a table for four. I felt like shouting out to everyone, "Look at me! I can ask for a table for FOUR!!" and then felt hot tears welling up.
Many people have told us that Kessia'd death has had a profund impact on them, people we don't even know. It is an incredible thing to witness, and even more incredible to see how some of these people have reached out to us. Even if it's a short conversation or email --- people share something of their soul which binds them to us in a very special way.
Over the last few weeks we've received two emails from child care workers who used to care for Kessia when she was 1 yr to 2 1/2 yrs old. They wrote to tell us how saddened they were to hear about Kessia's death, but that they remember her with great affection as a lovely, sweet and beautiful child. They shared a few little memories of her playing in the sandpits and being happy. One said Kessia "left heartprints in my memory". For me it was almost a small healing of the long held guilt I've carried about putting Kessia into child care at such a young age... all that time I could have spent with her instead. But to know she was happy helps a great deal.
The other episode which set me off in tears was sorting out some winter clothes from last year. I wrote to my dear friend, Andrea, about it:
I'm missing Kessia terribly. This week I finally found a bag of
winter
clothes we had in storage for Josh, but of course, I hadn't thought that it
would have lots of Kessia's clothes too. It just hit me all over again as I
looked at the clothes I had bought on sale last year for her to wear this
winter, and clothes she had worn last winter. I found myself searching her
pockets in case she had left anything behind, and also because her jacket
hadn't been washed and her hands had been where my hands now were. Sometimes
I don't know what to do or how to be, I grope around like a blind person
wondering how to let the tears come...
In amongst the pile of things was a red and white sports jacket I'd bought for Kessia to grow into. It was really groovy and she would have looked great in it. The sight of the jacket, whcih Kessia hadn't even worn or known about, brought back a flood of memories of being at Sydney Children's Hospital.
We arrived at that hospital on a Thursday. I remember collapsing for the first time on Sunday night. We had just finished going over the procedures for the following day for radiation therapy for Kessia, and had been speaking with the anaesthetist about a general anaethetic for her. I remember standing in the corridor afterwards, holding some papers we'd been given. Everything started fading out. I very consciously thought, "I can stay upright if I want to, but I think I'll just drop these papers for now". I hold out my arms and let go of the papers.
I'm aware people are starting to make a fuss over me. "I'm OK" I mumble, as I think, "Maybe I should just let myself go". Some of Kessia's team (nurses, doctors, registrars?) are sliding a wheelchair under me. I think, "Don't be riduculous, I don't need a wheelchair. I'll walk over there and have a sit." And then I collapse into the chair and get wheeled somewhere, and cry and cry and cry.
That same night, I am sitting in the corridors with Geoff and Michael. I'm sitting on the ground because they were worried I was about to get faint again. As we sit there, late at night, exhausted, sleep deprived, scared beyond reason, a young girl walked past wearing the red and white jacket I'd recently bought for Kessia to grow into. Size 10. I start crying uncontrollaby again, and try to explain to the boys what it's about. "That's the same jacket I bought for Kessia to grow into!" Geoff tried to comfort me by saying the doctors could be wrong, we're waiting for a miracle and who knows, one day Kessia may grow into that jacket afterall.
After that episode, for the remainder of our week at hospital, Michael or Geoff would keep very close in case I suddenly couldn't walk. It was the strangest thing. My legs would just stop working. I literally lost it a few times approaching Kessia's ward, thinking there's NO WAY I can go in there and for it all to be real. But I'd take a few deep breathes and think "Be strong for Kessia" and in I'd go. I had panic attacks on the few occasions I left and returned to the hospital --- classic hyperventilating and blubbering that I couldn't move, I didn't know what to do. I stood motionless, frozen to the spot, my mind reeling, screaming inside "My child is dying in there, they're telling me my child is dying!"
So that's the story of Kessia's red and white jacket.
I seem to be updating this on Wednesdays. Our life seems to be a bit more stable this week --- sometimes it's week by week, others day by day, and at times even hour by hour.
Yesterday was a hard day. Joshua's school had an open morning "Learning Journey" for parents to visit and review the work their kids have done so far this year. We really enjoyed Josh's excitement and enthusiasm!. He's come a long way in the past five months. He has excelled himself with learning to read. As an indication his teacher told us that by the end of kindy, they like kids reading at Level 5 --- she thinks Josh will be around Level 12!! He's also trying many new things, like colouring in and writing --- before he would refuse to even try.
Joshua showed us the Japenese room in the older kids wing and we came across what would have been Kessia's classroom, with classwork on display outside. As we read reports written by some of her friends and imagined the things Kessia would have been doing --- going on school camps, writing stories about wizards and magic, drawing autumn leaves --- a huge sadness flooded over Geoff and me. Memories of attending Kessia's "Learning Journey" last year felt like yesterday and Geoff remembered it so vividly he felt he was standing in her classroom watching the kids sing an Aboriginal song. We left Joshua's "Learning Journey" and as we walked towards the car, we had to stop and cry on each other.
Last weekend, two of Kessia's classmates dropped in to visit us. It was very sweet that they did. I asked Hannah and Melku if they remembered playing with Kessia (because she was there for such a short time) but they said straight away, "She was one of our best friends, she was part of our group!" and they talked a little about how much fun Kessia was. It was really lovely and the first time I had spoken to Kessia's friends about her. Hannah is leaving next week to live overseas, but we are having the girls over for a sleep over party this weekend. All of us are really looking forward to it :-)).
At the weekly Chang family dinner on Monday night, there was a great little conversation about Kessia's "refined" food tastes. After returning from 3 yrs in Vanuatu which has a large French influence, my family were very impressed by Kessia's mature preferences! She liked very good (ie. expensive!) brie cheese and would inquire about how soft it was before having any. If there was no ripe brie, she would ask for Port Salut cheese. She loved pate on warm baguettes. She thought tomato paste on pizza was too "salty" and preferred garlic butter. In fact she loved garlic with most things. Garlic bread, garlic mushrooms, garlic snails... Yes, garlic snails even!! Kessia loved that Geoff used to order garlic snails at one of the local French restuarants and thought it was fabulously funny to try and get me to taste one. I usually refused, but once, after she had eaten a few, she was very deternimed that I had to try one because we always used to tell her, "You can't say you don't like something unless you've tried it at least two times". She dangled a shrivelled up little snail in front of me, trying to get me to eat it. I kept refusing, so she kept cutting it up into tinier and tinier pieces, until eventually I gave in and ate a microscopic piece of garlic snail. Kessia was jubilant! "See mum, they're not that bad!" she said as she mopped up lots of the garlic sauce with her french bread.
I have so many fun memories of Kessia at cafes and restuarants, sizing up the place, the food, the staff, the service. She was headed for food review glory I think! One particularly bad cafe made her roll her eyes in exasperation each time she recalled how terrible the leek and potato soup was there. Others got rated and recorded on the back of the cafe's business card, eg. "Tasty sausages. Mash potato OK. Service good." She was such wonderfully good company.
It's nice to know the tradition continues a little with Joshua. Not to the same degree, but I was nicely surprised today when Josh and I went out for coffee and cake after school (he ordered hot chocolate and a caramel slice, plus made it very clear he expected to share my chocolate tart as well :-)) --- we chatted the whole time and half way through, he said quite unsolicited, "I love you mum". It was a beautiful little moment.
Emotions run rife through our lives. We seem to be have them under control, and then our enforced neutrality gives way to sudden tears of longing and missing.
Geoff and I are each reading excellent books at the moment --- one by an American mother following the death of her three year old Hannah to cancer, the other by a French mother following the death of her two daughters Mathilde, aged 7, and Elise, aged 4, in a car crash. We spent a little while reading out a few passages to each other in bed last night, inspirational snippets or words that capture precisely and eloquently the void we feel. And of course following on from this was our tears.
Geoff told me something really beautiful and I'm sure he won't mind me writing it here. Over the past month, our hardest yet, he has often heard a little voice which he takes as Kessia. Kessia says things to him like "It's alright, Dad" or "You're doing really well" or "Everything's going to be OK". He had a picture in his head of Kessia jumping up and down getting excited about something, shouting out happily... a beautiful image which turned my tears into sobs.
We still say to each other in the quiet of the night, "I
can't believe she's dead".
Kessia's Cottage Volunteers: Geoff and I have been in a slump for the past fortnight but are back up to chasing up things for Kessia's Cottage. We have made some progress, mostly thanks to the wonderful support of several volunteers in the Ocean Grove area.
The manager at Home Hardware in Ocean Grove, Paul Drake, continues to do amazing things on our behalf. He has a few more donations lined up for the cottage --- a truck-full of garden mulch, a fountain for our fairy garden, light fittings and other bits and pieces.
Another generous volunteer has been Thelma Evans and her group of friends, who I collectively think of as our "Fairy Grandmothers" (sorry if this makes you sound old!). They have taken on a range of jobs. Thelma and some friends go by the house each week to sweep the paths and keep it tidy, empty the mailbox, and keep an eye on the place. They've offered to make us a quilt to help with fundraising; others are knitting "trauma teddies" to give to children staying at the cottage; some are helping plant out the fairy garden with daisies and other cottage plants; they have offered to bake slices for our open day; and approach local businesses on our behalf about creating a KessiaCare Card. Mostly, their enthusiasm and support is what touches us and encourages us the most, and helps us continue to believe that we're on the "right track".
Time and again, when we are feeling we have little energy to move on, a door opens and we step forward. The other week it was receiving a phone call from a palliative care nurse who had just found out about Kessia's Cottage and called from Ocean Grove to offer her assistance in a personal or professional capacity. She has very moved by what we are trying to do, and from her many, many years of experience working with families and children particularly, she saw that Kessia's Cottage would be a wonderful opportunity for many of them.
KessiaCare Card: I always look out for specials. Anyone in my family can tell you what a bargain hunter I am! So I thought a great way to help families staying at Rainbow Cottage is to create a discount card for them. I've written a letter to be distributed to local businesses and attractions asking them to consider offering generous discounts to families for their week of stay in Ocean Grove. Hopefully, we'll get some restuarants and cafes offering half price meals, free coffees, etc and help take the financial edge off families in being able to fully enjoy their time away.
General cottage update: We're making plans for an open day on 16 July, inviting the public and service providers from the Ocean Grove, Geelong and Melbourne areas to visit the cottage and see it first hand. We're planning a sausge sizzle lunch and having the house open from 12 - 4pm. We have no idea what interest there will be but will hopefully receive RSVPs and not have too piddly a turn out!
The last of the painting should be completed by then. We've got $2,500 worth of roman blinds being installed at the end of the month, and a few decorative touches to add such as wall prints and lamps and side tables... We still have lots of manchester to buy and other items such as books and equipment. We are hoping the cottage will be ready by August for families to use.
Denise's update
About a month before Kessia got sick, we had been talking about getting matching mother-daughter rings. I can't remember whose idea it was --- mine I think, and Kessia really liked it. A few times I popped in to the shops and asked if they had such things at the jewellers, with little success. We had planned a few times to shop after school, but for one reason or another, it didn't happen and then Kessia got sick and I forgot about our rings.
Soon after Kessia died, I really felt bad that I never got our mother-daughter rings. It would have been a lovely symbol. I chastised myself for not thinking of buying her one to be buried with her at the very least, and it has been one of my nagging regrets these past few months.
Last week I was walking past a jewellers and noticed they were having a sale. I went in to ask about wedding bands (Geoff lost his last year) and ended up buying three rings --- all identical, just different sizes. It's a simple gold ring with two overlapping hearts and a small ruby in one heart (a signet ring). I decided I could still buy Kessia our mother-daughter rings after all. And while I was at it, I bought a Kessia-Joshua ring in case Josh wanted one too.
So Joshua is wearing his ring (on his thumb :-)), I wear mine with my wedding band, and Kessia's is here with us (often on Josh's finger as he likes the double-ring look :-)).
It was the only ring that came in both child and adult sizes and it's perfect: Kessia is the ruby heart, overlapping with each of us.
This morning I went on Joshua's school walkathon with him and saw a few of Kessia's friends. It was really lovely to see one or two of the special friends Kessia had made in her short time at school, and I gave them a big hug and kiss. I also really enjoyed being there for Joshua and having that time with him (though I'm so unfit my legs are now hurting me!!).
I was tidying Joshua's room later today, well, the spare room now since he continues to claim our room as his own. I searched through some clothes in the wardrobe hoping to find a few of his winter woollens, but suddenly found myself burying my nose in Kessia's dressing gown and favourite pink jacket. Another sudden rush of pain.
I seem to have developed a mantra that races through my mind at such moments "I can't bear it, I can't bear it, I can't bear it" and quickly shut my mind to any emotional turmoil. That's how I seem to get by right now.
I envy those bereaved parents who can picture their child clearly in their mind, can remember the sound of them laughing, can picture them peacefully asleep next to them, can remember big events and the smallest of occasions like they were yesterday. I still can't do any of those things. My mind is still a blank for most things Kessia.
I continue to have very few dreams. I used to dream BIG, multicolour, full-length movie type dreams, constantly. I would remember several dreams each night, I think because I was such a light sleeper and would wake and remember them. Since Kessia died, I have rarely dreamt. I've been wondering why I haven't even been able to see her in my dreams, feeling cheated that I can't even visit with her there, but I realise my mind is not yet ready to take that next step. I've only dreamt of her three times, and each has been a panicky nightmare of her dying before I can save her.
So I can't remember Kessia in my dreams and I surely can't watch her on video yet. We've been thinking that we should ask Joshua if he wants to watch some of our countless home videos, to see him and Kessia playing together when everything was normal and happy. Geoff and I can't bring ourselves to even think about watching them, but we know we should at least give Josh the choice.
On Friday night he was inconsolable. From out of seemingly nowhere, Joshua began crying and saying it was because he was missing Kessia so much. He cried and sobbed from his heart and we could only hold him and tell him how sorry we are for his huge loss and to say how rotten it was that Kessia died. He cried and cried, and every time I thought he was almost over, the heart wrentching cries would start afresh, his pain so close and evident.
He finally asked me to read him a story and went to the study to choose a book. I was waiting for him in the bedroom but rushed to the study when a new level of racking sobs and howls came from Joshua. I raced in to find him crying his eyes out as he flipped through one of Kessia's art books. There in front of him was drawing after drawing of Kessia and Joshua at the park, Kessia and Joshua playing in a forest, Kessia and Joshua at home in the kitchen, Kessia and Joshua sitting at the table playing a game. I told Joshua how much Kessia had loved him and that so many of her pictures and drawings had him in it because she loved him so much. And so many of her drawings she had addressed to me, full of love hearts and flowers and rainbows. "To mum, love from Kessia Leigh McConnell" or "To mummy, love Kessia" or "To mum, love, love, love Kessia". And I began to cry inconsolably too.
I've just returned from two days in the sun with two of my very best girlfriends. They are both dear friends from Port Vila who knew Kessia well and spoke at her memorial. Rhonda is due to have a baby any day now and like most expat mums-to-be, has flown over to Australia to have her baby. Julie moved from Port Vila a few months ago and now lives in Rockhampton. The three of us met up in Brisbane and had a wonderful time catching up and getting excited about the new bub and sharing more than a few tears about Kessia.
Geoff and I visited Kessia's garden today. We are going very infrequently now, only once a fortnight or so. The leaves have all fallen from her tree and their general disposition matched ours. I asked Geoff if he thought about Kessia's body being buried there, but he doesn't because he's usually too busy just thinking that she should be here with us. "How can we not have our daughter?" I later asked Geoff, as we walked away. He doesn't know the answer, but says its like having a part of your life wretched away and the pain never ceasing.
We finally attended to the business of finalising the burial site today. We purchased a family plot consisting of four "sides", each side forms a side of a square and within the square is Kessia's garden. Each side costs just over $5,000 and contains two burial "allotments". Each allotment can take up to three burials or unlimited "ashes". Forgive the bluntness of all this, but the business of burying one's dead is a sanitised (and financial) horror.
Many families buy one or two sides, but then the little garden is divided up. It is quite normal to see the garden split in two with one half well cared for and the other not. We bought one side for Kessia's burial and asked other family if they wanted to buy a side since we didn't want to "share" the garden and have strangers buried next to Kessia!! Members of my family bought a second side, so Geoff and I paid for another two sides --- over $15,000 just for a few metres of dirt. If we had had the time to think about it more, I think we would have been better off buying a small block of land and apply for a burial permit. But since Kessia is buried there, that is where we'll all go.
KessiaCare update: We're very excited about becoming involved in the Great Australian Tie Auction, and any potential funds we can obtain from Rotary. Even if KessiaCare doesn't become one of their nominated charities (because we're not yet a charity) it will be great to assist other children's charities in this way. But we have hopes that Rotary will agree with the Fiona Lodge committee to donate their share to Kessia's Rainbow Cottage...
My sister Carol and a close friend of her's, Margie, (also becoming a good friend and house-sitter for us on our many trips away) have taken on the main task of contacting "celebrities". I've only made one approach so far, but with huge success!
The other night I was thinking about celebrities that Kessia and Josh have both enjoyed. I thought "Wouldn't it be great if I could get ties from The Wiggles!". I searched their web site, found a phone number for The Wiggles Office and waded through concert dates, merchandising, etc and spoke to someone who surprised me by giving me The Wiggles' publicist details. I called her, had a chat and a few days later (yesterday) she callled to tell me she was on her way tie shopping! The Wiggles are a touring band and international stars, but it just so happens that their publicist was meeting with them today in Sydney! (Kessia really is smiling down on us.) So we should be receiving our first and incredibly exciting tie donation soon!!
Media strategy: I mentioned a few days ago our thoughts about having a media plan in place to promote KessiaCare in a directed and strategic way. Geoff and I met yesterday with Capital Public Affairs Consultancy to discuss this avenue, and next week will be receiving a communications strategy proposal from them.
Brain tumour advocacy: We are also becoming involved in the formation of a national brain tumour advocacy group. This was one of the key areas mentioned in our constitution, so its very timely that there is a move to establish a national group to lobby government towards informed decision making, targeted research, and general issues relevant to brain tumour patients, carers and their families. The group is meeting in Sydney in July.
I've volunteered to pull together a bit of a "numbers" paper to provide some basic statistics associated with brain tumours in Australia.
A tangental tale: Since Kessia died, I've noticed and commented at times about the "symmetry of life", that there is something in the pattern of events and life choices which lead us to particular points or outcomes in our life. For me, I have a long story to tell about this "circle of life" aspect that I'm trying to describe.
Almost all my life I've had a crippling fear of public speaking. I can pinpoint the moment it happened: at school, both primary and early secondary, I had always been popular --- class captain, one of the best students, that sort of thing. In Year 6 (around 12 yrs old) I was chosen to do a reading at a special mass, and my teacher told me not to worry about reading the verse and chapter details. But later, I forgot and started to read them out! I froze. Being the perfect student all I could think was "I'm not supposed to read that part! What should I do?" Time stood still; I didn't know how to continue after making, in my mind, such a huge mistake in front of so many people. Probably only a few seconds passed before I began to read shakily. But that moment was to have a profound effect on my life. It sounds dramatic for something so silly, but dramatic it was.
From that point on, the whole direction of my life was governed towards being inconspicuous, and above all, avoiding any situation where I had to speak out loud. What I studied at uni was particularly subject to this. Courses I would have liked I didn't do because a large part of the assessment was based on presentations. This is how I fell into statistics. In my early adult life, work options were affected by my fear of meetings and seminars. I could not bear the thought of having all eyes on me as I tried to say something, and so I lingered as I let my fears take precedence.
My fear of public speaking caused me to miss many opportunities, such as speaking on my wedding day about my love for Geoff, or making impromtu speeches at Kessia and Joshua's baptisms, or joining in animated discussions with friends.
All this changed following the death of my best friend Maree Ayers in 2000. We were living in Port Vila and received word that Maree had died in a car crash. I felt a great need to be at her funeral; not only that, but to say something too. To make that choice was huge for me, but wanting to honour my friend outweighed everything else.
Geoff was the only person who understood my fears and what this represented for me. We received the news about Maree on a Tuesday. On Wednesday we flew back to Canberra. On Thursday I visited with Maree's family. On Friday I was surprised to be the only person to give a eulogy at Maree's service. That day I stood in front of over 1,000 people, including many VIPs which normally would have phased me incredibly. Nonetheless, I spoke with affection, humour, love and pain for my best friend, but above all, I spoke with confidence and at some length. I wanted every single person in that room to know how much Maree's friendship had meant to me and I tried to meet the eyes of everyone there. It has only struck me this very moment that in terms of "the full circle of life", my fear was born in a church and died that day in a church.
Next fortnight will mark three years since Maree died.
I often wondered if, after that event, I was "cured" from my fear of talking in front of even the smallest of groups. Without a doubt, it was the starting point of my adulthood, at the tender age of 33. The next two years in Vila was a time of maturity for me. Following Maree's death, I reassessed my life. Away from family, friends and the familiar, I had to rely on myself and grew more into the person I wanted to be. Because we were diplomats, we had many opportunities to attend cocktail parties and receptions hosted by the French, EU, Australia and others, where we would drink excellent champagne and chat with the likes of the Prime Minister. We went to horse races and black tie balls. It was a great and fortunate life and I liked who I became.
Most people have problems adjusting to the "real world" on returning from postings, and we were no exception. Suddenly we had no house keeper, gardener or baby sitter. There were no more cocktail parties or reasons to dress up, no one to charm. I felt myself slipping back into everydayness and suburban life.
And then Kessia got sick. Our life took a new course and we have never been the same since.
But my new life skills have served me well. For only the second time in my life, I had to put my public speaking skills to a gruelling test, and for the second time in my life I found myself in front of a crowded church. I thought Maree's eulogy was a real test, but speaking about your beloved child in the past tense is something I will never wish on any parent, no matter how confident they are. But again, for Kessia's sake I spoke well that day, almost eagerly, wanting to tell the world of my radiant child and all that she will always mean to me.
My strength continues to grow. I think now, I have faced the ultimate fear --- the death of one's child --- and have survived. In comparison, what could frighten me now? So it is without reservation or hesitation that I now can pick up the phone and ask to speak to the CEO of companies or charities. I can join in on discussions and not feel intimidated by those around me. I have spoken at length with reporters, CEOs, doctors and prospective employers. If I stumble or make a fool of myself, what does it really matter? They are just one person afterall, another human being, same as me.
So the circle of my life continues. I have regained the confidence to speak out. I have found a purpose to my professional skills, which I have never appreciated until now, for now I can use my statistical background, the work I fell into more so by avoidance than by any other measure, to help with the brain tumour advocacy group. The life skills I learnt in Vila about being confident in myself and assured in who I am greatly assist as we chat to "VIPs" or the media or promote KessiaCare, something I would not have contemplated so easily before. We are making things happen.
And I feel Kessia smiling next to me.
Geoff and I have really noticed how the lyrics to many angst-ridden love songs reflect the pain of our missing Kessia. Sitting in the car this morning, this song made me cry.
Yet another productive day. I had two extremely positive phone conversations with contacts in the Leukemia Foundation and Very Special Kids --- both organisations are keen to use Kessia's Cottage and support us in any way possible, including letters of support for our submisison to the Australian Tax Office to request charity status.
I also received a phone call this evening from a reporter from That's Life! magazine who are extremely keen to do a tribute article about Kessia, after picking up the story in the Canberra Times. They print real life stories and apparantly Kessia's story matches everything they've been looking for for quite awhile. However, we've decided not to go with that magazine, so we'll decline their offer tomorrow. We think we just need a bit more time to have some sort of media strategy in place to raise our profile about KessiaCare Foundation as best we can.
Kessia's absence weighs heavily on my heart. I told Geoff tonight about the great phone calls I had today and the wonderful response of support from these two major children's charity groups, who thought we were "inspirational" and "definitely on the right path" if we wanted to help other families in similar situations, how much holiday homes are needed and appreciated. I told him how weird it all is because I don't feel inspirational or amazing. Geoff summed it up well as he cried on my shoulder: "I'd much rather have Kessia..." and then added "but if we can't have her, than doing this is something positive to focus on".
Another article we had published when we were in Ocean Grove. This appeared in the Bellarine Echo on Wed 23 April 2003.
Another busy day, more so than usual. I spent three hours today at the Canberra Centre (a large shopping mall) on the Star Day Appeal stall. I was rather dismayed at the majority of people who stared right through us, or said "Maybe later" or just said no. Still, what was really wonderful to see was that the most support was, unexpectedly, from young adults, rather than the numerous parents who walked past with their children.
As I was rushing off for Star Day I thought The Canberra Times may be interested in doing an article about the Starlight Children's Foundation, with a local families' experience as part of the story. I rang and left a message with someone, not expecting a return call, but a reporter called back late this afternoon and is keen to do a story. We talked at length and then at 5pm a photographer came to the house to take some photos of Geoff and I. Apparantly there may be a story in the papers tomorrow!!!
I've also been calling as many support service providers as possible in Victoria to tell them about Rainbow Cottage, and there has been an extremely positive and supportive response to what we are doing. Today I spoke to a social worker at Geelong Hospital who had just arranged for a family from Geelong to have a holiday at Fiona Lodge in Bateman's Bay, NSW. She will help in any way possible. Others I've contacted include the Carer's Association of Victoria, TLC for Kids, Very Special Kids, local palliative care services, paediatric bereavement programs, adolescent support services, and numerous others, all of whom think Rainbow Cottage is a wonderful idea and have many families in need of such a holiday house.
To top off the last few days, Geoff and I have been extremely encouraged by the support we've received from the founders of Fiona Lodge. Fiona Lodge is supported by Ronald McDonald's House Charities and is the first such holiday house to be funded by them in the world. Their web site may be found at http://www.fionalodge.org.au.
Jim Johns and partner Rachel, founders of Fiona Lodge, have become top-flight advocates on our behalf. We are very excited to have their support and to learn from their experiences.
This evening Jim and Rachel travelled from Bateman's Bay to meet with us, together with Malcolm Coutts from Sydney. Malcolm is the CEO of RMHC. Again, we are hoping at the very least to gain from their vast experience in establishing charities, forming boards and researching the legal implications associated with such ventures.
(It's also difficult to contain our excitement about meeting with the CEO of
one of the largest, high profile children's charity groups in Australia. If
nothing else, it has been a great affirmation of what we are aiming to achieve
with Kessia's Cottages.)
My brother Andrew is organising Star Day in Canberra. Star Day starts on Friday 9 May and is the major fundraiser for the Starlight Foundation, which made Kessia's trip to the Gold Coast to pat the dolphins possible. My family will be out in force for Star Day --- my sister Carol is on the stall at Tuggeranong Shopping Centre, I'm at the Canberra Centre, my sister Boney and Mirko will be around Civic, and my nephew Luke has got his venturer's group involved.
Wherever you live, please support Star Day and the wonderful work the Starlight
Foundation does for seriously ill children.
A lot has been happening in the last few weeks for us. But firstly, missing Kessia is unbearably hard at the moment. It continues to wash over us in waves. The vacuum of her not being with us threatens to suck us in, and the bigness and darkness of it all is almost welcoming at times. We go through so many moments of "I can't believe she's dead..." and each time, it hits us anew.
Grieving is very much a two steps forward, one giant step back process. And before I scare everyone with my moroseness, I'll move on to other things with which we have been keeping ourselves occupied.
Geoff started back at work this week, almost 8 months since he took leave when Kessia first got sick. He's started back on 5 hrs a day for 4 wks to ease into it a bit, but I think it will still be a difficult time in many ways. I was due back at work this week also, after 6 yrs of not working, but I've extended for another two months leave as I'm not yet ready for it. Nor do I think I will be in two months...
We have just returned from two weeks in Ocean Grove, Victoria. We officially took ownership of Kessia's Cottage on 17 April and spent our time there getting it ready. Its still got some work to go. Rather naively we thought we'd just fit it out and hang a sign outside, ready for families to come and holiday. But instead this is what we did in two weeks (of which we had easter and Anzac day, so all this was achieved in 7 working days!!!!):
* had the house (almost fully) painted inside
* dismantled part of the kitchen
* opened up a wall to create a new, wider doorway for wheelchair access
* walled up half the lounge room
* tiled the kitchen, dining, laundry and games room
* organised the replacement of a skylight
* organised new window fittings throughout the house
* organised the installment of a computerised reticulation system
* all that was organised around endless trips to stores tying to get the best deals on whitegoods, electricals, furniture, bedding, tiles, carpet, etc, etc, etc
* AND all that was done while we were living in the house without whitegoods, electricals, furniture, etc, etc, etc for the fortnight! (We got to know all the local restuarants VERY well)
We had our first article about Rainbow Cottage published in the local paper
(at a later date I will scan it and post it on the site). It was a great article,
from which we received some great offers of help and encouragement, including:
* two offers from nurses in the area offering to assist families staying at the cottage in anyway, for example, if parents want to go out shopping or for a coffee they could mind the kids, or provide nursing back-up.
* a call from the local butcher offering a $20 meat voucher to each family staying at the cottage.
* a call from one of the area's top painters offering to help with painting.
* a call from a mum with two disabled children saying the place sounded perfect for her family and others that she knows. She has never been able to take her family on a holiday before because she hadn't been able to find suitable holiday places for disabled children and their families.
* a call from a woman who donated bedroom furniture.
* a call from a mum who has taken on the one task that had been overwhelming us: the renovation of the bathrooms to make them disabled friendly. Two days before we were due to leave we were feeling rather dispondent about not being able to do anything about the bathroom situation --- the task was getting bigger than Ben Hur as it involved removing walls, adding in additonal wall studs, researching disabled equipment and needs, etc, pricing it all, finding plumbers, electricians, tilers, someone to draw up plans, etc --- it was too much!! But then we got a call from a lovely woman wanting to help with the Cottage named Danielle who, as it turns out is doing an interior design course. Geoff joking asked if that involved designing disabled bathrooms and as it turns out, this term that is part of their assessment. She is going to talk to her lecturer and ask if the class can take us on as a project, so we are waiting to see if that happens. We are very excited about that prospect!!!!
With all those wonderful things that we achieved, the best part for us though was the unexpected friendships that we made. Geoff and I have returned from our time in Ocean Grove deeply moved and touched by the generosity of the people we met.
In particular the Drake family took us under their wing and opened up many doors for us. Paul and his dad Bruce Drake own Home Hardware in Ocean Grove. Paul and his wife Yvonne have three gorgeous boys aged 2, 4 and 6 yrs and they were a life saver for Joshua. Home Hardware donated a $500 outdoor patio heater and a fantastic gas BBQ, as well as opening up an account where we recieve 20% off everything we buy. Paul spoke to the Wattyl Paints rep who in turn agreed to donate all the paint we need to repaint the house. Without asking, he has taken on board sending letters to many of their suppliers asking for donations for the Cottage or goods to be used for raffle prizes. Paul introduced us to Mick O'Brien and Frank Verhoeff who ended up rearranging their schedules to fit in painting our house. Not only did they do that, but they kept Joshua entertained for most of the time they were there!
We also met an amazing family belonging to Ashley Irwin, a cool 13 yr old boy who happens to have a brainstem tumour. Ashley, his lovely and loving 10 yr old sister Lauren, mum Belinda and dad Lance are helping keep an eye on the cottage for us. Lance is also going to redo a lot of the lighting in the house, and I'm sure Lauren will help look after the fairy garden. Ashley and I did a bit of business on the side --- he's going to organise some friends to paint a mural on our garage and we're letting him use a stay at the cottage for a prize or two in a raffle he's organising for Bluey Day.
One of the best nights we've had for a very long time was the night before we left when we had everyone over for a thank you BBQ and spent most of the night laughing.
An update on how Josh is going.
Over the last few weeks we've noticed a significant change in Joshua. He's happier going to school, happy after school and is asking less often to be collected at lunch time. He's showing a great interest in learning to read and has impressed us greatly with his eagerness. His math skills are firing away and we play lots of quizz games --- his favourite game with me. I ask him questions about spelling, math, general knowledge type stuff, etc.
Geoff and I asked to meet with his teacher and school counsellor yesterday to discuss how Josh is going generally. They also think that he is doing really well and we left feeling very reassured.
His cognitive leap and how he seems in himself are all positive signs. Geoff and I are probably overly sensitive and on the look out for negative or different behaviour that may result from Joshua's loss of his adored sister, role model and friend. He is still difficult with us a lot of the time --- demanding and loud, doesn't listen or do what we ask --- but that could also be typical 5 yr old behaviour!
We have noticed that he isn't anxious about Kessia's death. He continues to talk about her naturally and often. He is of course forever affected by Kessia's death but we hold on to our hope that he won't grow up damaged as a result.
Another good sign is that he is less "clingy" with Geoff and I. He still likes one of us around "for company" whenever he is in the bathroom or falling asleep, but is generally less in need of us and more comfortable visiting others. He is still in our room and seems to be settled there for the long haul, which we don't mind at all. I like having him close, and his sleep has settled down enormously --- he is back to sleeping through the nights. But there are still nights, like the other night, when he whimpers in his sleep and calls out to Kessia. Really sad...
Geoff and I have also been seeing a counsellor to talk through our feelings of grief. The last few sessions we've talked about Josh quite a bit and she seems to think he is doing fine and doesn't need any professional counselling.
Today, the last day of school before Easter, Josh proudly brought home his first Easter card. He had written (and it's the most writing he's ever done):
" Dear mum and dad and Kessia. Happy Easter. Love from Joshua"
He decorated the front of the card with a beautiful rainbow. I'm not sure why
he chose a rainbow, but it was exactly something that Kessia would have done,
and makes me want to cry.
I now have our kessiacare.org.au site up and its wonderful to be able to have people access Kessia's Site once again.
The last fortnight has seen us swing from one emotional extreme to the other. Kessia's birthday was a good day for us. It was great to be away and we had the best week we've had as a family since Kessia died.
Coolum Beach was a lovely spot and the weather was fantastic. We spent the week swimming, either at the beach or at the pool. Our highlight was meeting up with our dear friends Julie, David, Virginia and Cameron Blackwell who now live in Rockhampton. They drove down about 5 hrs south, we drove up 2 1/2 hrs north to meet up in Hervey Bay --- it was wonderful seeing them, especially for having that link with Port Vila where they knew Kessia for three years.
Kessia's birthday (26 March)
The lead up to Kessia's birthday wasn't too bad. I think we tried not to think about it. On Kessia's birthday, Josh was boss of the day and he did a good job dictating to us throughout the day (and for about a week following, asking each day whether we were still doing special things for Kessia's birthday :-)). We tried to instill in him the idea that he had to choose things that Kessia would have liked to do, otherwise we would have found ourselves at McDonald's for breakfast, lunch and dinner :-).
First we had breakfast out and asked the cafe to cook up Kessia's favourite brunch treat, a Rossi Croissant, from her favourite cafe The Rossi in Port Vila. Kessia used to call them Rossi Crossi's, so Joshua had a "Rossi Crossi for Joshie" treat :-).
Next it was hitting the beach for some fun in the surf and sun. We spent hours there and it was really beautiful. Kessia would have spent hours happily swimming and playing in the sand, making sandcastles and tunnels and moats...
Morning tea was a cola slushie, followed by a lunch time tea party back at our holiday apartment. For some reason, we were upgraded to the three bedroom penthouse (!!) and the accommodation was fantastic. Of course, because Josh still sleeps with us, it was a bit of a waste because we only used one bedroom with a mattress pulled off one of the other beds for Josh :-). For our little party, Josh chose some of Kessia's favourite treats and we sat out on the verandah eating chips and lollies and chocolate cake, playing "Kessia quizz show", a little game I've made up where we take turns asking each other "Kessia questions" --- it sort of goes like this:
Denise to Joshua: Contestant Number 102, tell me three things you really loved to do with Kessia.
Denise to Geoff: Contestant Number 1, tell me 10 of Kessia's favourite foods.
etc, etc. It's a nice way for Josh to remember Kessia.
The rest of Kessia's birthday was spent at the resort's pool, walking to the
shops to choose a special video to watch, and then going out to McDonald's for
dinner and ending with McFlurry's all round (a very special treat!).
I am so looking forward to having the site back up and running. I was hoping it was going to be this week, but am still waiting. In the meantime, I've been sporadically trying to keep the web diary updated, so there are quite a few entries to read below.
We are heading up north for 9 days away for Kessia's birthday. We want to go somewhere new where we haven't been before as a family, so we're flying to the Sunshine Coast. Josh is really excited about a beach holiday, and I think it'll do all of us a lot of good. We'll be back on 1 April.
Our last few weeks continue to revolve around Kessia's Cottage. On 5 March we officially became KessiaCare Foundation Ltd. It was a major milestone for us. On 15 March we finally got our loan approved, held up in part by needing to have the company formed first. We are still awaiting the final bit of paper to make it signed, sealed and delivered.
Last week Geoff and I posted off about 120 letters seeking donations for the cottage. Everything ranging from beds, TV, whitegoods, towels, toys, etc. We have no idea what to expect, but so far in four days we have received 4 rejections (from major companies that I thought would definitely donate some things). BUT, we have also received several exceeding generous replies, which in my excitement I'll list briefly:
* Toys from Mattel
* About 20 games, puzzles, jigsaws, wallcharts from Addendum II
* 10 videos from Network Video (we asked for 5)
* Videos or DVDs from Roadshow Entertainment
* A wetsuit from Billabong
* 4 wetsuits and 4 rash tops from O'Neill Australia (we asked for one wetsuit)
* 2 woolen quilts from Aussie Wool Quilts
* 2 doona cover sets from The Sleep Doctor, Fyshwick
* A *playground* complete with three platforms, slide, fireman pole, wiggly ladder from Playspace Playground Pty Ltd (we asked them for a spring rocker worth over $700, they have donated a playground worth some $6,000 or more). We are in awe of their generosity.
I am hoping that by the time you are all reading this, we'll have our new web address up and running at www.kessiacare.org.au.
Kessia would be very proud of us I think. Mainly about the playground because its from the same company that Geoff used to install three playgrounds in Port Vila. She always called it "Dad's park" and loved playing there. To have a small version at the cottage is very special indeed.
We continue to wait for Kessia to walk through our front door and wake up from this nightmare. Will this feeling ever go away?
We have recently pulled ourselves out of a very lonely slump and have caught up with some very special friends. Two families that we knew in Port Vila now live in Canberra and we spent a very lovely afternoon on the weekend catching up with them. It was very special sharing some tears together, and for us to be close to people who knew Kessia from our years in Port Vila.
I also had morning tea with two very dear friends that I haven't seen in years. We figured out we started at work together 12 yrs ago in the Dept of Health! We were all together when I went off on maternity leave to have Kessia, and we were all together for several years after that. It was a good reminder for me to come out of my hole every now and then.
Geoff and I have been seeing a counselor to explore issues about Kessia's death. When we talked about how we felt about Kessia's birthday next week, she suggested we talk about what we think Kessia would be like at different ages --- what she'd be doing, imagining how she'd look, what she'd be interested in... It just made us cry. I don't want to imagine those things. I don't want to have to imagine those things. I just want Kessia back so I don't have to imagine those things. I want them to be real. I want Kessia to be real again. I want Kessia back.
I've spent the last few days unpacking more boxes. One contained all the kids art folders, where I filed away all their beautiful artwork, pictures and paintings. Kessia has several folders, all overflowing with incredible drawings and little stories. I found and laminated a note she wrote to Geoff, saying "I love you Dad. You are lots of fun! love Kessia". I also found a series of Kessia's TLC (tender loving care) drawings --- whenever she wanted a cuddle, I told her to yell out "TLC emergency!" and I would have to rush over and hug her :-)).
Looking at her TLC drawings now, it makes my heart hurt so very much, and at the same time, smile up at heaven. They all start with the words "TLC To Mum". One drawing is of a huge love heart with the word family written in it repeatedly, with the words "Family get loved alot". A second is a drawing of concentric love hearts, with the word family in the very centre. At the bottom, again, are the words "Family's are loved". A third is a drawing of seven hearts: The largest has a Kessia and I holding hands surrounded by love, inside another heart is Josh and Geoff; words fill each of the other hearts --- TLC, Love, Family Love Heart, Family and the last heart is full of hearts. I will scan it in when I get around to it.
Needless to say, its all been very highly emotional.
A story about a bit of light hearted relief and actual toilet humour.
We have been battling with Joshie's eczema ever since we returned from Port Vila. It's been chronic and distressing for all of us. He is sick of being lathered with layers of cream twice, sometimes three times a day, and it's usually a real battle for us each night. So to help, I invented a rhyming game, where he's actually allowed to use all the silly words we usually tell him not to say :-). He can't resist that!
Here's a few of our rhymes, but you have to fill in the blanks (and if you're like Josh, you shout them out at the top of your lungs!!):
Joshua McConnell is very silly,
He likes lots of ryhmes that end with _____!
Joshua McConnell is sitting on the loo,
He has lots of fun while he does a big _____ !
My name is Denise, I'm Joshua's mum
I'm standing in the bathroom, wiping his _____ !
Joshua McConnell has lovely lips
They're perfect for sucking watermelon pips!
Joshua McConnell has a great nose
It's perfect for smelling a beautiful rose!
Joshua McConnell has big brown eyes
They look like two yummy chocolate pies!
The big news this week is Josh has lost his first tooth (25 Feb) and finally relinquished to a haricut, on the proviso that he could grow a "tail", so with his new do and missing front tooth, he looks quite the little raggamuffin :-).
Josh has been missing Kessia very much lately. He had been feeling unwell for a few days, and when we finally narrowed down the problem, it was his heart. He told us he felt sick because his heart hurt too much from missing Kessia.
We've had a good family day today. Out for brunch and then a game of bowling which Josh suggested. We only discovered bowling as a family last year, and Kessia had been only two or three times. It was sad bowling today without her, only 3 names up on the screen instead of the four of us.
After, as we went to visit Kessia's Garden, Josh asked when he was going to die. We talked about that for a while and then he said, "I really want to see Kessia". We assured him that was our greatest wish too, and being able to see Kessia was really terrible. We translated it into Josh-speak, so by the end we had all decided that not seeing Kessia was like a huge, big, fat, stinky, rotten egg!
Geoff's birthday was on Fri 28 Feb. It was generally a good day considering how much Kessia was on our minds. It's always been our family tradition that we took a day off work for our birthdays and spent it with the kids, so it was a very different and difficult day for us.
We did go out to see a play for Geoff's birthday. It's still difficult going out and doing normal things. At interval time we sat in the foyer with people milling around and I grew increasingly teary. We seem so fixated on grieving and bereavement that our conversation revolves around observations like, "I wonder if there are other bereaved parents in the audience tonight?" There was a person near to us who was obviously having treatment for cancer. I so wanted to go up and say, "I'm sorry to intrude, but I just wanted to say that, whatever battle you are up against, we wish you strength." But I didn't.
It reminded me of when we flew back from Sea World with Kessia. Any one could tell she was close to dying. We waited in our seats, with our lovely nurse Jodie Wilson (who we've tried to track down, so Jodie if you ever read this, please email us), while all the other passengers got out. I will always remember a young man, thin and bald and wearing a head scarf, who, as he passed by Kessia and I, he paused and turned to us and bowed slightly in acknowledgment. Whenever I think of him, it brings tears to my eyes.
The past week has been so hectic we've only just slowed down. We are immersed in KessiaCare Foundation stuff and in getting Kessia's Cottage off the ground. More about that one day...
Today we took Josh and his cousin Jonathan to Circus Oz. I felt quite schitzophrenic throughout the show. It was so fantastic and so fun and so amazing that I would find myself either totally enraptured by it all or close to tears as I thought about how much Kessia would have absolutely loved it. But as I told Josh after, I was sure Kessia and her friends really enjoyed the show and had a great view of it all flying around the big top.
My enthusiasm for KessiaCare Foundation scares Geoff at times I'm sure :-). But as I told him today, I really feel Kessia smiling beside me when I get excited about the direction it's taking. I sense she is feeling proud of us in her own little way, and can just imagine her saying to everyone around, "Hey, that's my mum and dad down there trying to do this thing!" I told Geoff that she'll probably get a group of friends together to fly around to all the people we need help from to whisper in their ear to help us. The KessiaCare Angels :-)).
Of course we know this may never happen, but there are a few "trendy" sayings which we use as our mantra to keep us going:
1. Everything that is done in the world is done by hope. (Martin Luther)
2. Twenty years from now you will be more disappointed by the things you didn't do than by the ones you did. So throw off the bowlines. Sail away from the safe harbour. Catch the trade winds in your sails. Explore. Dream. Discover. (Mark Twain)
3. Whatever you can do, or dream you can, begin it. Boldness has genius, power and magic in it. (Goethe)
Actually it's almost 1.30am on Wed...
A very full and hectic day today. I've managed an ultrasound (not related to anything to do with babies!), created a draft charter document for KessiaCare Foundation, had lengthy phone conversations with five different people about services they provide to people with life threatening illnesses and forming non-profit companies, had an appointment with a specialist, met with a solicitor, watched some Pokemon video with Josh, played construction sets together (in a gruff voice, " Hey, Bob, let's dynamite that bridge!"), played Pokemon games on the internet, etc, etc, etc.
Geoff had an even BIGGER day than mine. Negotiations on Kessia's Cottage stalled and this afternoon we were rather in turmoil about what to do. We seemed at a loss, and just after we decided we walk away and learn from the experience, a door opened, and we're back on track. Geoff has had countless phone calls, bank meetings, ferrying me around appointments and Josh to school and dance class (he loves it!), and in amongst it all, is struggling with emotions about Kessia being so close to the surface.
Geoff realised while we were on our Vic holiday that I have an obsessive personality. It's true (surprise!). Immersing myself in a project such as KessiaCare Foundation helps me get through the days. But I also recognise I'm not doing this just to take my mind off grieving or to fill my head so much that I don't think about Kessia not being here with us. It's not an attempt to say "Kessia's life wasn't wasted because her death has created something we dearly hope will help other families." In my mind, I've never thought Kessia's life has been wasted and creating this venture isn't supposed to justify her dying or to find reason in her death.
We just want to help other families who may have to go through the same hell we went through. Geoff and I now look back on Kessia's illness and realise we feel angry that the only services we were offered was bereavement counseling (while Kessia was still alive) and palliative care. Last night I found the ACT Cancer Council website and the wealth of information and services available to people in our situation, services we could have desperately used if we had known of their existance. I really feel we should have had some social worker available to us to tell us about those things, and not just about the dying stuff.
Also, we know we are totally going against one of the biggest no-no's in what not to do in the early stages of grief --- make life changing or major decisions. For Geoff and I, this has been such a "gut" thing, a God thing if you like. So we aim to go along with this thing for a while until our gut tells us differently :-). Or the bank I guess :-).
The past week has seen us settle a bit more into a "normal" routine. Josh has his ups and downs about school, but on the whole it's gone outstandingly well.
We are going to the coast tomorrow, returning Monday. Josh is excited to go boogey-boarding again. We're hoping for good weather and some peace.
Geoff took Josh to his first hockey match tonight --- Australia vs Netherlands.
Geoff returned somewhat subdued. He had a fun time with Josh but I think he
just misses Kessia too much when he's doing Special Dad Things.
Kessia's Cottage news: Kessia's uncle, Andrew Chang, is our partner in financing Kessia's Cottage. Together, we're financing half the cost and seeking a bank loan for the remainder. Kessia's other uncle, Mirko Kesak (an accountant) has been instrumental in helping us set up a company. It's been really nice that it's all been within the family so far.
We're creating a company in order to be seen as a legitimate, non-profit organisation. It's called KessiaCare Foundation. KCF will be seeking corporate sponsorship and donations, so keep posted!
An ode to Oslo: We are starting to unpack boxes we still haven't unpacked since Port Vila. They are mostly Kessia and Joshua's toys and special things, so it's been particularly emotional. One box marked "Kessia's Bedroom Things" will be left until much later, when we feel up to crying through another box of tissues.
But I did find a poem I wrote to our unborn child in November 1994. We dubbed our bub "Oslo" while in utero. Oslo was the first European city we visited on our big backpacking and travelling adventures in 1991 and 1994. Geoff added in a few verses referring to us trying to conceive in different places all over the world!
Like all parents, we were so excited by Kessia's immenint arrival into this world, but for us, she was even more special.
Not many people know this, but I will share with you one of the many reasons Kessia was our miracle. In late March 1994, I underwent emergency surgery due to an ectopic pregnancy. I was told I was lucky I didn't haemorrage and collapse, and luckier still my fallopian tube was not removed. Geoff and I grieved for the loss of our first baby. We also learnt that my chances of another ectopic pregnancy was high, maintaining a healthy pregnancy in the future was reduced, and it could take some time to conceive.
Well, three months later, bang! I was pregnant! I had to undergo many check-ups and blood tests in the early stages of the pregnancy. But there was one day when I was completely distraught. I was sure I'd lost the baby , having similar symptoms to when I had the ectopic pregnancy. I sat outside the clinic crying, waiting for a hurriedly arranged ultrasound to try and detect a heartbeat. And then... joy!! Our little baby was still alive. There were tears everywhere.
And the remainder of my pregnancy with what was to be Kessia went smoothly. I had the most wonderful birthing experience, a 5 hr labour with no drugs, and home the next day. Kessia was born almost to the day of losing our first baby.
So here's the poem we wrote for Kessia all those years ago.
November 1994
Your dad and I wrote you this poem
Whilst in my stomach you were growing.
We pray that you grow fit and healthy
(And make your parents proud and wealthy!)
We thought we'd write this now to you
So in years to come you'll read this through,
And think of us --- your mum and dad
And share the joys and dreams we had.
It's now the year one nine nine four;
The year that your dad really scored!
We've travelled far, we've lived quite well
All in all, this year's been swell.
And while we've travelled far and near
We've hoped and prayed for you so dear.
We tried for you in New Orleans
But still you just remained our dreams.
We hoped again in the South Pacific
Alas, maybe we were too specific!
Nor Paris, London or in Rome...
We finally conceived you back at home.
And the highlight of the year has been
Your tiny heartbeat that we have seen.
You were only very small ---
Five centimetres if at all.
We've planned you now for over a year
And count the days 'til you appear!
The past few months have really flown
And people say I've really glown.
The morning sickness wasn't really
All that bad, though I did nearly
Drive your father rather crazy
When I went sort of vague and hazy.
The stomach churns have been quite many;
"Quick, Geoff, quick! I need a Rennie!"
(For the benefit of those too young
They taste like cement but calm the tum.)
My stomach muscles they have stretched
And it's not that great when I dry wretch,
But it's all been worth it, yes, every bob,
To have YOU, our darling little tod.
And dad's been great in looking after
Every whim that I can muster ---
He cooks, he cleans, he paints and mows,
While I laze around, eat, read or doze.
You're now half way to being born
And my figure has got up and gone.
But I love the feel of my big belly
(Your dad pretends it's full of jelly!)
With every kick we smile quite widely
And think of you squirming inside me.
Your dad calls you his Little Babe
And about you I am sure he'll rave.
Your name has had us stumped for ages;
We've leafed through at least a hundred pages
Of children's names from far and wide
And still we find we can't decide.
<a few weeks later...>
But several weeks have now passed through
And at last we've found a name for you.
We just can't wait, we really must see
Our little Kessia or Zachary.
The next few months will fly we know
Christmas and New Year will come and go.
And we have so many things to do
To make our home all cosy for you.
And so... we look forward to next year
When our baby that we hold so dear
Pops out sometime in March or April
To be our joy, our love, our angel.
A poem from Kessia aged 7 months: A second poem I wrote, on behalf of Kessia, was also amongst the papers I found last night.
I wrote the poem to send with some photos of Kessia to relatives, including Geoff's sister Anne (who gave Kessia a lovely Nepalese wool shawl when she was born, and is shown in one of the photos), her partner Kevin and his kids Ellen and Adrian, who all lived in Tasmania ("Tassie"); Geoff's Uncle Aurther and Aunty Bev; and his relatives in Perth, Western Australia.
November 8 1995
Dear Aunty Anne, the kids, and of course, Kev
I'm doing the rounds to you, Arthur and Bev
And then there's the relatives over in Perth
Who haven't seen head or tail of me since birth.
Mum and Dad are so slack --- it's really appalling
That I'm now seven months old and they've just started calling
And writing to loved ones to say that I'm fine
And sorry they hadn't dropped them a line.
So here's a few photos I've asked them to send
And this poem too that they're to append.
As you can see, I love my Nepalese shawl
And did Dad tell you that I'm starting to crawl?
It may sound conceited but I really am cute
I can say that wholeheartedly without fear of dispute
People I meet tell me this all the time
So that's why I put it in to this ryhme.
I hope to see you in person before it's too long
Please Aunty Anne, don't prove me wrong!
In fact, I'm being an extra good little lassie
To force Mum and Dad to bring me to Tassie.
We are finally back from holidays. I'll summarise a few of the important happenings in retrospective order, so please start from 4 January (which failed to upload before I left), and work your way back to the most recent entries if you want to read about our time away in order (which I suggest as it makes the most sense).
I emailed the Oz Brain Tumour group today in reply to another parent's posting about losing their 2 yr old daughter. It sort of sums up our feelings at the moment:
"Dear Neil,
We are so sorry for your terrible loss with Maddie's death. If this group allowed swearing, which I've taken up a bit since Kessia died, I'd say it's **@#!! AWFUL.
I rang a group called The Compassionate Friends the other day for the first time --- you've probably heard of them, perhaps even joined. Anyway, they asked if I was seeking information for myself or a bereaved friend. I told them a very short version of Kessia's story, how she had died 3 months ago and we're only just beginning to feel like the shock is wearing off. Their immediate reply: "Three months is nothing. The fog doesn't start to lift until at least 12 months..." It sort of helped me breathe a sigh of relief.
Geoff and I are keen to join the group. They're all bereaved parents. I think the most important thing they can offer to us are the words 'We understand. We share your pain. We know what it's like. We've been through it, and it's hell.'
Like you, we just feel missing Kessia is getting worse instead of easier. And like you, I feel it's too hard keeping Kessia's website updated, though I'm trying. But unlike you, we have Joshua to keep us going. We've often said he's the only one that's holding us together. So our hearts go out to you in not just losing Maddie, but losing your life as parents as well.
Geoff will probably want to say something separately to you. He was obsessive about Maddie and what you were going through. I think it's a dad thing --- and because we lost our precious little girls weeks apart.
There's so many things that happen where I almost lose it. Opening a library bag to find a book Kessia had borrowed from school --- her last book. Seeing a girl wearing something I'd bought for Kessia to grow into. Returning to school for the first time and having to walk past her old classroom. When I grab a sheet of paper to scribble something down on and find a drawing of Kessia's in the pile of scrap paper. Joshua coming to us late at night clutching a photo of Kessia to his chest, crying his heart out.
Josh has been asking us things like "Do you want to die mum?" or "What's happened to Kessia's body?". He's said things like "I wish we could all die together." He's just turned 5 and has such a weight to carry on those little shoulders.
On our holidays, we stayed a night with a beautiful family with 4 girls. Josh was the happiest and most normal he's been since Kessia died. When we left, he asked whether the 10 yr old girl Lara could be his new big sister. Everything is heartbreaking.
So the main thing I really want to say to you is we really understand what you're going through. Geoff's sent you our phone number before if you ever want to call."
Joshua started school yesterday (4/1/03). We've been very worried about how he'll settle in, because he's been talking about how much he hates school each time we raise the subject. In fact, he'd yell and insist he doesn't want to go. Very different to what we had expected.
So we came back a few days early to help settle him into a routine at home. We realised that we haven't had one since Kessia died --- Vanuatu, Christmas, camping... there's been no set routine for any of us. Before, Josh was a great sleeper --- out like a light in 3 mins. Now he says he's scared, has nightmares, doesn't want to be alone, wants someone with him all the time, and takes over 40 mins to finally fall asleep.
As we prepared for school, missing Kessia was harder than usual. I searched for a cloth library bag for Joshua and when I found it, opened it up to find a library book Kessia had borrowed. Her last book from the school library. Geoff and I hadn't even read it to her.
To help make school fun, we went on a few shopping sprees to buy yummy lunch box treats and all his own textas, pencils, etc. Josh liked the idea of a uniform and we asked if he wanted his own hat, but he wanted Kessia's which was really nice.
We managed to meet with his new kindergarten teachers on Mon 2 Feb and talk about ways of making this transition as easy as possible. Josh got to look around his classroom and meet the teachers which I think helped ease some of his fears.
So by Tuesday morning Josh was all set. There was no battle. No screaming, "I hate school!!!". He looked adorable in his uniform, his bag swamping him, but our little Josh insisted that he could carry it --- he just had to sway a little, that was all :-). In the car, I told him it might be easier to take his hat off, but he pushed it to the back saying, "Remember? Kessia used to do this with her hat! See, I don't have to take it off!". Silly me :-).
As we walked toward Kessia's old classroom, the first wave of emotion swept over Geoff. Later, it was my turn as I imagined how excited Kessia would have been about going into Year 3 and seeing her friends and doing the whole school thing; about buying her a new summer uniform because she was only at school for winter last year, and how pretty she'd look in the yellow check dress with ribbons in her hair; how we would have planned all her school lunches with a list of things she'd like --- home made sausage rolls, her favourite pastry cheese sticks, cheese and ham buns...
When we got to class, Joshua was an angel. We had expected to stay for quite a while and pick him up at lunch time for the first few weeks. He told us to go after half an hour. When we checked back at lunch, he told us he was going to stay the whole day. When we dropped him off this morning for his second day, he bid us goodbye at the door and told us not to pick him up until the end of the day. Success! (So far...)
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A wetsuited Joshua at Dalmeny beach |
Denise holding Josh after our carriage ride in
Queenscliff |
Denise and Joshua at Apollo Bay |
We left Canberra on Sunday 5 Jan. We had no specific plans, just an amazing amount of gear! We spent a few nights on the South Coast, then drove to Victoria. We camped a few nights at Inverloch in the freezing cold, had a day at Phillip Island then caught the car ferry to Ocean Grove, where we spent a relaxing week in a house belonging to Julie and David Blackwell, our great friends from Port Vila.
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| Geoff at the Cape Otway Lighthouse | Denise at the Queenscliff Fort |
The first week away was terribly hard. Geoff had bronchitis, Josh an ear infection. Geoff and I were exhausted. The weather was too cold to do much swimming and it was hard to keep Josh occupied, though we did have lots of fun times. The evenings were the worse when Geoff and I would just look at Kessia's photos and cry.
Our time at Ocean Grove was really good. We visited lighthouses, swam, explored rock pools, flew kites, played soccer, and had a good holiday time. Even so, it was an especially difficult time for Geoff and we talked about coming back to Canberra.
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Joshua jumping off rocks at Loch Ard Gorge
Following our week at Ocean Grove, we headed down the Great Ocean Road. We spent 5 nights in a little secluded cottage at Cape Otway surrounded by beautiful bush and wild koaloas! Here we did several beautiful rainforest walks, visited more lighthouses, walked to waterfalls. From there we spent the next few days hopping along the coastline.
We flew over the 12 Apostles. We went to a play of Shakespeare's "The Tempest" in Loch Ard Gorge which fascinated Joshua. We camped in Port Fairy. We drove home through the bushfires, arriving back on 28 Jan.
A few significant holiday hightlights extracted from the journal I kept are below.
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Denise and Josh outside our tent at
Inverlock |
Geoff and Josh exploring rock pools
at Point Lonsdale |
Monday 13 Jan: We went picking strawberries at a farm near Ocean Grove. Joshua talked a lot about Kessia, probably the first time this trip. He wouldn't let us pick all the ripe strawberries, saying we had to leave some for Kessia to pick. He talked about how much Kessia used to love strawberries, and how he would share his with her. Geoff and I were stuffing our faces as we picked (:-)) but Josh didn't want to. He kept saying he was saving his to have with Kessia that night, and how he wanted to pick the biggest and juiciest ones for them to share together.
Strawberrry picking at Wallington
Wed 15 Jan: Josh continues to talk often about Kessia which is wonderful. As we walked up a coastal headland in Barwon Heads, he busily collected broken shells to take back to Canberra for his pet mouse and fish (he has neither yet) so he can share them with Kessia.
Later, as we explored The Bluff eating a snack of chicken crimpy biscuits, I told Josh he could have the last two. Surprisingly, he said he'd just have one and save the other one for Kessia :-). [and Geoff felt really guilty when I told him this after he'd eaten the last biscuit! :-) ]
That night we broached the subject of adoption with Josh. He likes the idea if we could get a girl and name her Kessia. We explained it wasn't to replace Kessia, and that if it ever happened, she'd have a different name. But we all agree on a girl.
Thursday 16 Jan: We drove to Queenscliff and past the train station just as an old steam train was going on a little jaunt, so we hopped on board. Later, Geoff told me tearily he had really missed Kessia on the train ride. The last train we went on together was just before Kessia was diagnosed --- a little steam engine train trip on Father's Day last September.
Friday 17 Jan: Geoff let Josh choose a special drink. He chose a juice popper with the Powerpuff Girls on it. That night, Geoff asked Josh if he'd seen the Powerpuff Girls before. Josh replied, "Yes I have. At Sydney Hospital. Before Kessia was dead. When Kessia was still alive. Remember that?"
Geoff and I continue to go to bed only around midnight, usually quite teary after saying goodnight to our darling Kessia.
Saturday 18 Jan: Geoff and I treated ourselves to a night at the Vue Grand Hotel in Queenscliff, a three course dinner in the lovely old dining hall, and a babysitter for Josh, to celebrate our 10th anniversary.
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The dining room of the Vue Grand |
Denise at dinner |
Geoff and I think Josh is doing really well. He talks about Kessia when he wants to, quite happily, and refers to her death naturally. This morning he was blowing her a stream of kisses.
Geoff seems to be doing better too. He has lots more "images" of Kessia than I do. I think my mind is still blocking those memories. Geoff commented last night that he's beginning to forget the sound of Kessia's voice. He can picture her saying things, just not the sound. I haven't done those sorts of "rememberings" yet.
Sunday 19 Jan: We arrive at Cape Otway for 5 nights. Our cute little cottage is lost in beautiful bush. "Kessia butterlies" are all around. I feel Kessia would have loved this holiday away. She would have gotten bored with all the non-swimming parts though :-).
Geoff and Josh at our cottage at Cape Otway
Missing her will never get easier. Living, or learning to have a life without her, will hopefully become easier, but missing her will never go away or become less so. I'm still struggling with the words "Kessia is dead." What does it mean? It still doesn't register.
I'm far too normal and in control still. I'm just waiting to suddently lose it, to fall apart, to collapse. To be walking down the street one day and suddenly find myself in an overwhelming gulf of tears.
I watch young girls Kessia's age with fascination. Was Kessia that height, that weight, that size? She was far prettier, far more beautiful beyond doubt.
Tuesday 21 Jan: This morning, Geoff had a big cry about Kessia, about not believing she's gone. Josh asked what dad was crying about, and I told him he was just really sad about missing Kessia. Josh came over and hugged the both of us.
Wednesday 22 Jan: We've been having really nice days, but missing Kessia is exhausting us. Geoff and I have little conversation and are mostly caught up in our own little world of grief. Feelings of being alone, together.
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Geoff and Joshua at Mait's Rest rainforest walk |
Josh and Geoff at Hopetown Falls |
Thursday 23 Jan: As we left the cottage, Geoff got teary saying, "I wish Kessia would just step out from behind that bush with a posey of flowers she's gone to pick for you." He said that sometimes he feels that if he could just think hard enough, believe hard enough, it'll happen.
As we drove in the car, I began to cry as I remembered Kessia and I dancing about the lounge room to one of her favourite songs, My Sherona. I don't remember much about Kessia still. It's as if my mind is still protecting me or I've just switched off, gone, "Oh well. Kessia's dead now. Can't do anything about it. Better get on with life. Can only do that by pretending she didn't exist. Because acknowledging her existance by remembering is far too painful and unbearable."
But of course, I can't pretend she didn't exist. Again, that night I cried. "I want her back. I just want her here with us."
I looked at Kessia's photo tonight and thought of her dying. God, how I hope she wasn't in pain, didn't suffer, wasn't scared. I can't bear to think about it. Will there ever be a time to contemplate such things? The horror of a daughter's death? MY daughter? MY Kessia?? ... my beautiful, sweet, darling girl. My precious angel. My joy. My delight. My Kessia.
A photo of Kessia climbing a tree, in our cottage at Cape Otway.
Earlier that day, we were picnicing at a magnificent spot next to the Barnham River, under ancient tree ferns. The name of the place was Paradise. Over the last few days, we had been in negotiations about buying a house in Ocean Grove. Geoff took a call from the agent, who called to tell us our offer had been accepted. As we walked along the river bank exploring, Geoff commented on how appropriate it was to hear our offer, on a house we dream to make into Kessia's legacy and to be named Kessia's Cottage, had been accepted in a place called Paradise.
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Our picnic at Paradise Picnic Reserve
Friday 24 Jan: We left Cape Otway to meander down the coastline for a few more days. We spent the night at Port Campbell, quite close to the most spectacular stretch of the Great Ocean Road. That evening, with a fully laden picnic basket, we set out for Lock Ard Gorge for the performance of The Tempest. It was fun, we were excited and it felt good to be doing something like that. But Kessia is never far from my thoughts and I think always how wonderful, better, more fun everything would be with her to share it with.
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The Tempest at Loch Ard Gorge
Saturday 25 Jan: A slightly surreal exchange: As I was checking out of our motel, the woman at reception told me how her budgie had died suddenly yesterday. An autopsy showed it had a tumour which had spread to the base of its brain. She said, "You wouldn't have known! It was chirping and eating just a week ago, then went off its food, and then suddenly dropped dead!" I almost felt like saying, "Well actually, I do know..." but didn't want to ruin her day.
I told Geoff the budgie story in the car. Josh overheard and asked about the budgie. He said it would be alright because Kessia and the budgie were friends. He said it was really sad that the budgie died from a tumour because tumours can make you really, really, really sick and that they were very naughty. He then talked about Kessia's tumour a bit.
So a budgie story with a difference...
The other day, I asked if Josh missed Kessia. He made a really sad face and said he missed her a lot, but he didn't want to miss her because he would cry too much. I told him it was good to cry, but he didn't want to.
Sunday 26 Jan: We spent the day driving from Port Fairy where we had camped the night, inland to Macedon. Bush fire haze was all around.
That day in the car, we had the most amazing conversation with Josh. He first started by asking us what would we find if we opened up Kessia's box. I was momentarily confused, thinking he was referring to one of Kessia's toy boxes, but then realised he meant Kessia's coffin. He's too young to know the truth, so I told him that we wouldn't find anything in her box. I said it was pretty weird but I thought it might work like this: when Kessia died her soul went up to heaven, and when she was buried in her box, her body magically went up to heaven. Josh called it Jesus magic. But he said he didn't think that happened, that he thought just Kessia's brain went up to heaven.
We told him we were unsure exactly what happened because we hadn't died before. At this, Josh replied that he wished he could die right away. I told him I'd be really, really, really sad if he died.
He asked me if I wanted to die. I told him the truth. When Kessia first died, I thought it'd be nice to be dead too, so I could be with Kessia, but then I realised that I also wanted to be with Geoff and Joshua, and that even though Kessia is in heaven, we'll always be a family and we'll see Kessia in heaven one day.
Josh wondered how we'd know Kessia in heaven. He wanted to know how we'd recognise her. (These are amazing questions I kept thinking to myself!).
Geoff said that of course we'd know Kessia. She'd be the first one to meet us when we got there. We'd have lots and lots of hugs and Kessia would be really excited to show us around and introduce us to all her friends and family.
Josh thought about all that and then said, "Wouldn't it be nice if we could all die together?". That one had me stumped for a few moments. I've often thought it myself. But as I told Josh, we're still a great family. We're going to have so much fun, and do so much together. It wasn't our time to die yet.
Then the conversation changed track and we were soon talking about cows or something.
That night we stayed with an old childhood friend of Geoff's, and probably had the best day of our holidays. They were a beautiful family with four gorgeous girls ranging in age from 2 to 10 yrs.
The parents marvelled at how readily the girls took to Josh, saying how unusual that was for them. Josh too was the happiest he's been since Kessia died, and the most normal we've seen him, in his interactions with the girls.
We left the following day, feeling refreshed and emotionally recharged, with just the slightest hint of a hang-over :-)).
Monday 27 Jan: From Macedon we drove to Wangaratta where we managed to get the last hotel room not taken by firefighters. On the drive, Josh asked if one of the girls he'd met yesterday could be his new big sister. We felt so sad for him. We said she could be a very special friend, but that noone could ever replace Kessia.
That night, most likely following the conversation we'd had yesterday and then spending a wonderful day surrounded by lovely girls, Josh came to us clutching the photo of Kessia to his chest, crying like he hadn't done since the night Kessia died.
The tears came, the big heavy sobs. He told us he couldn't stop crying because he missed Kessia too much. All we could do was cuddle him and soothe him and talk about what a wonderful brother he was, and how much Kessia and Josh had loved each other and were best friends, and how sorry we are for him that he's lost his beloved sister. He cried and cried. Our poor darling Joshie.
We told him how crying could really help and that it was good to cry. When he calmed down a little, I told him that missing Kessia is really, really hard for all of us. It's like our whole bodies are filled with sadness. But I hoped that we could find ways to help some of that sadness come out of our bodies. I said I thought there would always be a little bit of sadness in us because it is really sad that we don't have Kessia with us, that it's probably the worst thing that could happen to a little brother and a mum and dad. But I hoped that we could make most of the sadness go away little by little.
I suggested a game. We all went around suggesting ways to help our sadness come out. Geoff talked about crying being a really good way, that as the tears came out, so did a little bit of the sadness. Josh suggested something really good which I guiltily can't remember. I talked about how I write things down in my journal and how much that helps me. I suggested drawing could be a really good way too.
Josh wanted to draw a picture straight away. Geoff and I were very surprised, since normally, Josh avoids drawing even scribbles. And since it was already past 10.30pm, we were reluctant at first, but then I thought, no, this is important stuff happening here.
So we got out his special journal and he asked me to draw a picture of him and Kessia holding hands. He filled in the faces with big happy smiles and coloured them in with bright rainbow colours because, as Josh said "That's what Kessia liked". Next he drew a fantastic rainbow encircling the two of them. Lastly, he glued in a treasured piece of shiny cardboard he'd been carrying around all holidays, and on it wrote a "J" and a "K" --- "JK". Soon after that, he fell peacefully asleep.
Tuesday 28 Jan: We awoke to a strong smell of smoke. We checked what roads were open, and drove the rest of the way home, finally arriving back late in the afternoon.
The next few days settling in: The first 72 hours after returning home I think we just cried. The emotional jolt of arriving back to our house, the place where Kessia died, and seeing her photos, the couch where she lay for several days, our room where she finally died, etc was too overwhelming. We were unprepared for how difficult it was and it took us by surprise.
Over the next week, so many little things happened to lay raw all those emotions. Preparing Josh for the start of school. Fishing out lunchboxes and drink bottles from the backs of cupboards, to find Kessia's name on them in her handwriting. Finding a library bag for Josh, only to find the last book Kessia had borrowed from her school library, which we hadn't even read to her. Finding Kessia's long hair in the hairbrush Josh took out of a drawer.
But the hardest one for me was the afternoon I picked up a sheet of paper from our scrap paper pile to print something on, only to find a chart I'd made. It was to help remind me to do all the things we'd just learnt about in caring for our darling girl who was by then fully paralysed --- to move her every 2 hours into a different position, to freshen her mouth with swabs and to massage her and apply lip gel. I'd made a hasty chart to record the times I, Geoff or a friend did all these things so we could keep track and not forget. I made the chart the morning of 3 November and had recorded two times on it, 11.30am and 1.45pm. Kessia died 2 1/2 hours later.
Jump to the following entry for 5 February.
We are leaving on a three week holiday tomorrow, taking Joshua on his first camping trip. We seem to be almost ready ---we've borrowed lots of camping stuff and bought a new tent, inflatable mattress, wetsuits, a soccer ball for Josh, and lots of marshmallows to toast around a campfire.
Yesterday, we tested out the tent and had lunch in it and talked to Josh about how much fun we'll have on our holiday, and that it was sad Kessia wasn't with us because she would have loved it. Josh as usual, after a pause said, "She is going to be with us! In fact, she's here right now! She's sitting right there! I'm going to share my mattress and sleeping bag with Kessia and we're going to talk at night, aren't we Kessia?" Joshua's sweetness breaks my heart and makes it soar all at the same time.
So we are away until the end of the month. We intend to focus on Josh, swim as much as possible, sun on the beach, play games, laugh, perhaps cry a little or a lot, go for walks, talk about Kessia, and put off the unbearable load that's threaten to swamp us several times this past week.
[From here, jump to the top of our holiday summary.]
Denise, Geoff and Joshua are away on a family holiday until the end of January.
Life continues to get harder and harder. We are listless and exhausted. Our emotional energy is all but gone. We feel guilty about the lack of attention and interaction we give to Joshua. Just when we think it can't get any worse, it does.
As expected, Christmas week has been our most emotional so far. Kessia's absence weighs heavily upon all of us.
Being around people generally encourages us to hold it together, but in the privacy of our own home, the hole in our hearts makes it a real struggle to breathe at times.
Geoff got his ear pierced on Thursday and it looks really great. He has a small gold star, and aims to have three special earrings made for him to wear as his constant reminder of Kessia; mainly as a constant reminder to others that Kessia is always a part of us.
So the pressure is now on for me to think about that tattoo idea of mine...
Today I feel remarkably fine. I woke up feeling like I wanted to do things and it was easy getting out of bed.
Each day is different. And although that saying of taking one day at a time has some value in its simplicity, it does drive me crazy! Really, what sort of advice is it? What would be the alternative? Is there a choice?
Even when Kessia was sick and all manner of people told us to take one day at a time, it felt like false advice. On the one hand, we were repeatedly told just to focus on getting through that day. On the other, we were being steered into thinking ahead: How do we want Kessia's life to end? Do we want to resussitate? Have we thought about funeral arrangements? Will you tell her she's dying? What will you discuss with Joshua?
At the other extreme, in the week following Kessia's death we weren't taking one day at a time. We were living hour to hour. Sometimes in blocks of five or ten minutes.
But now, I think one day is OK. In fact, this day is OK and I'm looking ahead to tomorrow.
And who knows what will happen after that? Perhaps one day, we'll be well and truly on our way towards cashing in on One Day At a Time and upgrading to The Future.
Joshua's birthday celebrations continued with a party at McDonald's this afternoon. It's our third party for his 5th birthday, and by far the easiest!
Many fries and nuggets later, I find myself (1) Feeling disgusted I ate so much, (2) Tired after another very full day, (3) Missing Kessia, (4) Feeling sad for Joshua, and (5) A bit all over the place.
This evening I started putting away Kessia's clothes. I've left one drawer full of her favourite clothes --- it's the first time I've looked at them since she died.
The pyjamas she was in while she lay in our house for the five days between her death and burial are the only clothes of hers that hadn't been washed (if I had thought about it, it would have been nice to have had some of her "used" clothes to keep). People talk about smell being an evocative memory... but I don't have any memories of Kessia smelling a particular way. I've clutched at her clothes and inhaled deeply --- there's no memory explosions happening, just some comfort in holding a small part of her. Her pink fairy pyjamas has a strange smell (and excuse this morbidity) but I guess it is the smell of death. Kessia smelt like that after the funeral parlour did whatever it was they had to do to her body. I didn't like it at all. I've always been sensitive to smell, and at times I found it overpowering. Geoff couldn't smell it at all.
We still have a garage full of boxes to unpack, but this evening I found some of our stored summer clothes from Vila. As I unpacked them, many of Kessia's old favourites which she wouldn't let me give away resurfaced, and my breath caught several times as I waited for the tears to follow. Also stored was Kessia's new summer wardrobe I had bought and kept last season on a trip back to Australia. All her new Size 8 clothes. They are so pretty and cute and trendy. I always enjoyed buying her things I knew she would look groovy in.
Tonight as we tucked Josh into bed, he told us Kessia was lying next to him, so we all gave her kisses and I heard Josh telling her that he had opened her Barbie lipsticks the other day.
We went to the cemetery on Monday. Josh was jumping over Kessia's grave, so I told him he could have jumping races with Kessia. He took a running leap over her grave, and when he finished, looked up to the trees. He explained that he was watching Kessia jumping over the trees on her pet unicorn (which he says is named Joshua Keegan McConnell :-)).
So these are the sorts of things Geoff and I deal with on a day to day level: What to do with Kessia's clothes? Which toys are special enough to keep in sight, which to store, which to give away? What about her books? What about her school uniform --- keep for memory's sake or keep for Josh or give to the school uniform shop? Is it healthy for us to encourage a "make-believe" Kessia for Joshua? What special things of Kessia's do we want to give to her best friends? Why do her pyjamas smell of death?
What kind of a parent can think about these sorts of things and not be affected in a negative way? Not get depressed?
So now, I think I'm feeling pretty depressed. My last update seems kinda upbeat, like we're getting there, we're going to beat this... which we will eventually I know, but I hope in the meantime, I'm not sending out the wrong message to people that we're "normal" because we're still far from it, years away perhaps.
Which is why, although we're achieving a lot on the practical front, I feel I am increasingly losing ground on the personal front.
In thinking about this subject for the last few days, I realise that many of my interactions with people are strained because they treat me like everything's "normal" --- happily chatting away and generally not mentioning Kessia at all. I think I can do "normal" if our grieving is acknowledged in some way. It only has to be simple, but I need it to be there.
Yesterday marked 6 weeks since Kessia died. Last night I was thinking, how are we ever going to get to a year... two years... a lifetime without her? It seems impossible at times, but at others (when we're pretty together) there's a glimpse of a future without grief overshadowing our lives; a future of us laughing and happy and free of constant sadness and missing.
Last night Geoff and I dissected the whole "Did we do enough for Kessia?" query. We know we did everything possible, and even more importantly, that we remained in control of Kessia's care almost entirely until her death... but there will always be that one regret --- that we were unable to save her. I think we can always take comfort in the fact that we did everything we could have. There are so many bereaved parents who haven't had that opportunity. In many ways, it will help with our healing. That, and the fact that we were able to say goodbye.
A few books about grief and other people's experiences talk about the six week mark being a tumultuous time. Generally, up until then, people think they're coping remarkably well and then it all hits. Suddenly they can't get out of bed. The tears are endless. They lose contact with friends and family.
Geoff was interested to see how we'd be, though we know it's early days yet. But generally, we seem to be doing alright in the circumstances. We have a beautiful Christmas tree up, chosen and decorated by Josh and Geoff. I've spent a few days out in the garden pruning and weeding the kids' vegie patch. Geoff's cleaned out the garage and laundry. We've shed lots of tears about missing Kessia. Our hearts ache and feel a constant emptiness about them, but that's to be expected. We've caught up with friends and family, though I'm finding it hard still to interact with people. We have two chicks for Josh to care for. Our lovely cat, Lollipop who we brought back from Vanuatu and has been with family for three months, was returned on the weekend. We've done a clean out of the house for Ed, Chris and their boys to stay with us a few days. We've acheived a great deal. And we've only been back from Vila for a week. So really, I think we're doing OK.
We gave Josh a special "magical" journal last night. The journal was lovingly made by Julie Blackwell for Kessia, but Kessia was only able to do one beautiful drawing of flowers in it. So we decided to give it to Josh for him to record his memories, drawings and special stories about Kessia. He loved the idea immediately and hopped out of bed to get the first thing he wanted to put in his journal --- his three most precious pictures he had taped to his wall: an autographed High 5 card, a photo of him and Kessia with High 5 taken a month before Kessia died, and a Pokemon drawing.
Josh continues to amaze us. He amazes us with his unchanging belief that Kessia is with him all the time, and that's why he's not been too sad about missing her. We were talking with friends the other night about Joshua's behavious being pretty exhausting. But our wise friend Susan pointed out that Joshua has lost his role model, that Kessia has been there all his life, and now he has no one to model his behaviour off. I thought, how obvious! Why hadn't I thought of that in any concrete way? Kessia was his constant companion and friend. Now, he looks to us to fill in that time and we're not used to it. His wanting to wear Barbie lipstick, Kessia's headbands and keep her Barbie dolls... it's all his way of modelling Kessia. His behaviour has been silly and difficult, but that changes as soon as he gets one on one attention. He's carrying a lot on those little shoulders.
This morning, he asked to do some work in his journal. We pasted in the pictures he chose last night, and we both worked on a "title" page. I wrote what I thought Kessia might have said to him: "To my best brother Joshua, I want you to have this book so you can make lots and lots and lots of happy memories of me and you! Love always, Kessia". Josh decorated the page and it looks wonderful.
The grief books talk about choosing living over merely existing, and I feel we've done that.
I feel continually on the verge of weeping, constantly.
This morning it was seeing the girls' clothing section at Target that almost did it to me. Tonight it's been editing hundreds of photos I haven't had the time to do before now --- photos taken in the month before Kessia became sick and then during our stay at Sydney Children's Hospital. I'm not sure how I managed to get through that without being a mess all over the place. I have several hundred more to go...
Geoff and I went out to Kessia's garden late in the afternoon. In all the times we've visited, today was the first that I actually made myself think about Kessia being buried in the ground underneath me. I thought, it's quite bizarre to think there's only a few metres of earth separating our bodies... why can't I just dig it up and hold her again?
Actually it's Thursday around 1.30am in the morning.
Geoff and I have been pretty much doing our own thing these past few days (me spending most of that time uploading things to this site) but we had a really good catch up talk tonight.
Geoff captured his feelings of grief and how he feels at the moment very descriptively tonight (and I'll leave out the swear words). He described it like this: similar to that feeling I have of not being able to stop crying if I start, his is if he threw his head back and opened his mouth, a huge scream would well out from him and he wouldn't be able to stop.
And on that 'confused' feeling about Kessia being dead, he said it's like there's something not quite right in his head, that something vital seems to be jammed up inside, and if he banged his head against something again and again, and again, repeatedly, it would fall back into place and everything would be alright and his brain would work properly and Kessia would be with us still.
Then we switched tracks and talked about organising a birthday party for Joshua at McDonalds, which turned out to be a catalyst for more tears for Geoff. As much as we disliked going to McDonalds often, Kessia loved the playgrounds there and would always want to stop whenever she saw one. Geoff talked about how Kessia loved playing happily on her own at playgrounds like that and the Fun Factory or Kids Rampage, whereas Josh still needs interaction to be kept amused. Kessia would just happily play and be content.
Yesterday I spent the day tidying up, emptying suitcases, catching up on my web diary and cooking dinner for the first time in ages.
Geoff also had a long, soulful cry last night. It's good we're taking it in turns.
Josh awoke with a nightmare about 2am. He asked if he could get up to watch a video, and thinking he just needed to get a different image in his head, we all got up and had toast and snuggled up to watch Spot for a while. He said that maybe he had the nightmare because Kessia wasn't with him. I suggested that she may have gone to visit some friends, but he said she should be with him all the time.
Today, Josh left the house wearing one of Kessia's glitter headbands he found, as well as some Barbie lipstick he opened up yesterday. When he got home, he played with one of her dolls. I wondered whether I should be worrying about that sort of behaviour, but have decided it's very healthy for him.
He also started "report writing" today, carrying around a little notepad and scribbling away in it. He showed me it before bed tonight and it's an adorable little story of six pages of drawings all stapled together. And this was his story:
Once upon a time there was a girl named Kessia (and she died) and she had a girl cat named Lollipop and she liked playing with her. The End.
My brother Ed, his wife Christine, and their boys Caleb and Ethan, arrived from Canada last night. We spent the afternoon and evening with them at my parents house, where we had a birthday party for Josh.
We gave Josh a belated birthday present - a big Tonka workbench, which we told him was from Kessia, and that she had choosen it for Joshua before she died. He was really happy with it. The workbench comes with a toy phone, so Josh called Kessia in heaven to say thanks :-).
It's lovely having Ed and his family here for Christmas.
We had a fairly restless night, and at 3am I was struggling to get back to sleep. Grief overwhelmed me and I began to cry. Geoff woke and comforted me as best he could, but each time I thought I could stop, a new wave of grief washed over me and a new bout of sobs would take over. I had always felt that once I really started to cry, I wouldn't be able to stop, and that was how it felt.
I must have been crying for about 45 minutes, when I heard a little voice in my head saying, "Don't cry, Mum. I'm alright." And all of a sudden, the great pain in my heart lifted and I was alright.
I slept well for the rest of that night, and later in the morning, we drove back to Canberra.
We stopped at Kessia's garden to say hello. It was almost to check if it was all real, and seeing her grave was almost devastating. Her garden is growing beautifully, thanks to Andrew and Bone who watered it while we were away.
We spent the afternoon and evening with Michael at our house. Again, I had a long, long cry. Returning home and seeing all her things, and photos, was too sad, too much.
During breakfast, I remarked to Josh that I was sorry that Kessia wasn't with us for his birthday. Josh thought for a second, and smiled suddenly saying, "Yes she is!".
We continued with breakfast. Geoff suddenly told Josh and I to stop and listen to the song that was playing in the restuarant. It was an old