I was a little reluctant to begin celebrations today for Claire’s birthday, but after being invited to a friend’s house for early Melbourne Cup lunch, it seemed like an ok idea to accept her suggestion to bring Claire a cake . Claire won’t officially turn two until next Thursday, 8th November, but today we had what Callum called a “Practice Birthday” and a “Pretend Birthday”, with some good friends. Thanks to those who shared the day with us!

Claire made my day this morning when I opened the fridge to show her the cake I had slaved over last night. After only a few seconds, she signed ‘frog’, and I knew Callum had made the right choice in choosing her cake for her.

I was a little worried it looked a bit like a lizard, but Claire squashed those concerns. It was evident that she was impressed

So, the countdown to Claire’s birthday has officially begun. In eight days time this amazing little princess will be 2, and I can hardly believe it. We must have had loads of fun in the past two years, because time certainly seems to have flown by.

I hope you enjoy the action shots of Claire’s unexpected “cake smash”.

Click to view slideshow.

With Claire’s birthday just around the corner, thoughts of her pregnancy, birth and her arrival have been in the forefront of my mind, more than usual. The range of emotions that I feel in the moments of reminiscing is vast, but this doesn’t really surprise me. They reflect the insane rollercoaster I was on two years ago, a ride which I so wanted to enjoy every minute of, but kept being thrown on various loops that would make my head spin. Even the confirmation that I was expecting a girl had to be celebrated with the news of a possible brain anomaly being given in the same breath.

With the endless speculations of doctors as to what might be the result of Claire’s identified differences in development, it was easy to feel worry and anxiety. It was easy to sometimes succumb to it all, and to lose my ability to approach the situation with any strength what-so-ever.

A neurologist suggested that we should be prepared for Claire to arrive early, and that it would be highly likely that her brain development would result in her inability to breath alone at her delivery. It was decided that the best place for her delivery would be the Mater Mothers’ Hospital, rather than our planned delivery at Pindara on the Gold Coast. Doctors at the Mater recommended that we move up to be closer to the hospital a month prior to Claire’s due date. With the support of our private Obstetrician, we were able to negotiate that two weeks prior to her due date would be safe.

Two weeks prior to Claire’s due date, Matt finished up at work and we moved into our room at Ronald McDonald House. Two single beds, a trundle for Callum, an ensuite with toilet and shower, and a communal kitchen. We had packed a few sets of clothes each, a handful of books and toys for Callum, and we made ourselves as comfortable as possible in what we fondly referred to as ‘baby prison’.

It was a very strange time. It was almost like a holiday as we had the chance to spend lots of time together, exploring South Bank Parklands, the iMax theatre and the Museum. I recall that my Facebook posts at the time were rather vague, as our journey at that time wasn’t public knowledge, though everyone was waiting to hear about the arrival of our new baby. The kitchen reminded me a lot of my experiences of backpacking hostels in the US and UK, but the mood was significantly different. People don’t head to Ronald McDonald House in the same spirits as they might a backpackers hostel. People are here because of circumstance, and usually the circumstances are not that great.

In the interest of privacy and respect, I obviously can’t share specific details of the people we met during our time at RMH. Mostly they were parents to tiny little babies who were fighting for their lives. Others, like us, were waiting for their babies to arrive, hoping against all hope that the worry had all been for no reason at all. That their babies would be born healthy and ‘normal’ and that they would soon be taking them home.

If nothing else, our time at RMH gave me a healthy dose of perspective. My first real opportunity to meet other parents, from all walks of life, who for no particular reason had been dealt a curveball that would no doubt have a significant impact on their lives. My heart was warmed as new mums told us about their beautiful, tiny babies in the NICU, and I was very honoured to finally be able to meet some of these treasures when Claire finally arrived, and for a brief time, was their roomie. My heart broke as we shared the heartache of a family whose little one didn’t make it to delivery day, and another couple who had only a handful of days with their precious baby boy.

The three weeks we spent at RMH (yes, three weeks, until Claire was INDUCED a week after her due date!), were certainly sobering for me. I had time to reflect on the what ifs, on how I might survive this journey whatever the outcome might be, and to soak up the joy I had already experienced as Claire’s mother, before I had even had the chance to hold her in my arms.

“Baby prison” was less calming for Matt and our terrible two-year-old, though Callum did enjoy the playground, the new toys and some ‘friends’ he found to terrorise. It was less than a holiday in so many ways and the atmosphere was one that we were not used to. Still, we made the best of the situation and had some time to still ourselves before Claire’s arrival. It seemed inappropriate to complain about the situation when there were others who had been staying there for up to a year. We were very relieved when we were able to take Claire home straight from hospital, and were able to cancel the booking that the hospital had arranged from us that extended right up until a month after her birthdate.

Ronald McDonald Houses really do become a home away from home for many families each year. They are reliant on volunteers, and also on public donations to continue to support their communities.

This Saturday, 10^th November, is McHappy Day. McDonald’s stores around Australia will be collecting donations to support these houses. Even since my days making fries and serving Big Macs, I have always tried to support this event in at least some small way (perhaps this was just a good excuse to order a Big Mac!). Little did I know that one day I would be needing the support returned.

If you can help to support Ronald McDonald Houses, know that you are supporting families just like ours. Now there’s a great reason to indulge in fast food!

Donate here

On Claire’s 2nd birthday, her Nanna (my mum, Majella), wrote this piece about what Claire means to her. Thanks, Mum. xo

What does Claire mean to me? 

Claire Matilda Gutke is a precious gift. Like most really special gifts, there is something about the waiting, the expectation, the “unattainableness”, that makes the gift even more deeply longed for and more heartily valued.

Claire is the last of our 9 grandchildren – all wonderful gifts, cherished for their individual charisms. But Claire has made me wait. I had to wait for her to be part of my 60^th birthday family photo. I waited anxiously and impatiently for her to arrive before we left for our holiday in New Zealand 2 years ago. How it broke my heart that I was not there to greet her. I waited for her first cuddle, her first smile, her first glance of recognition, her first whispered word. I wait and watch with pride as I see her develop at her own pace.

Just as Hannah’s arrival completed our family and taught us about sharing (things often come in 4s or 6s, so having to share among 5 posed new challenges), so has Claire’s arrival completed this next generation of our family and has taught us about waiting, about patience, about perseverance, about courage.

But mostly, Claire means love. Her cuddles and raspberries are wonderful. How easily I succumb to her simple charms!

Claire’s arrival into this world has also shown me how amazing her parents and brother are, and how strong and conquering is their love. Hannah has shone with a passion and energy that seem boundless, but which often stretch her to her limits. She would certainly not be able to continue to maintain her current regimen of therapies, advocacy, conference organisation, blogging, etc., etc., without Matt there to provide practical and moral support, and without Callum to provide lots of love and comic relief.

Claire means light. Let her continue to shine for us!

Claire and “Ruby” in their matching birthday outfits What a clever Nanna!

Callum and Nanna, reading stories.

If Claire has had an impact on your life too, and you would like to share how, please email me at clairematilda@me.com.

HAPPY BIRTHDAY, AMAZING GIRL!!

I have always been full of life, enthusiastic, motivated and somewhat confident in many ways. I have tried many things (my attention span tends to see me move to the next rather quickly!), and have been lucky to have the support of my family and friends as I have taken on new challenges and strived to reach varying goals. From their view, it must be exhausting to watch at times, and to stay up to date with what the latest venture might be.

Claire’s journey seemed to increase this passion to try new things, right from the very start. Perhaps it was my perceived notion that the path I was on, particularly career-wise, may no longer be attainable.

Prior to Claire’s birth, I spent some time semi-regularly with a beautiful social worker from the Mater Hospital. “I’d love to be a social worker,” I thought.

As we waited at Ronald McDonald house, we witnessed the work of some generous volunteers. “I could volunteer here,” I thought.

After the first handful of blog posts that received such positive response and suggestions that I could write a book, I was given a new idea. “I COULD write a book,” I thought.

As the Speech Therapists and Occupational Therapist entered our lives, “I should study to be a speechie or OT,” I thought.

As we watched the election campaigns for our local government, “I could run for council,” I thought, and I said it out loud . “And you’d probably win,” droned Matt, with a sense of disbelief, pride and exhaustion all rolled into one. We both laughed. I believe that this was the most ridiculous thought pattern of all! I had no interest in this about 5 seconds after the thought popped through my head.

On and on and on it goes. My parents definitely succeeded in instilling self-confidence and enthusiasm into their children! It is rather liberating to have an “I can do anything” approach to life, and has certainly helped me to take on the new challenges of being a parent, and more recently being a parent of a daughter with special needs. Becoming an advocate for Claire, CDCS, and other families facing disability, has been a huge part of this role, one I have needed the “I can do it” approach to tackle head-on.

In the last year or so, I have had chance to reflect further on how this must look to others. As a whole new raft of people have come into my life, I have noted that they have perceived me as a little ‘manic’, or in the midst of a breakdown, or just having lost my marbles. Many new faces have watched with a worried brow as I have recalled details of our weekly schedule, and the additional projects that I have taken on. It’s like they are waiting with baited breath for me to explode!

I don’t get concerned when the ‘new people’ look like this, but when I see friends and family who know me well wear that same face, I know it’s time to pull back. The acceptable level of enthusiasm and perceived mania is much higher with these people who know that this isn’t “Hannah having a breakdown as the result of having a child with special needs”, but just “Hannah”! It is funny how much of an improved view of myself I have now, and how I can laugh at how my enthusiasm must be absolutely EXHAUSTING for others to watch. Someone asked the other day, “Do you get tired from having an ‘idea a day’?!”.

In short, yes! It is exhausting being me. Another friend commented a few weeks ago, “Your life is so full, Hannah!”. Without much contemplation, I replied, “I’d rather it be full, than empty”. I meant it. Two years ago today we were allowed to bring Claire home from hospital, just four days old. This was such a liberating experience after contemplating that it might never happen at all, and I am sure it upped my enthusiasm for life ten-fold.

Don’t get me wrong, at times I HAVE taken on too much, and even I wonder at what point I will drop the basket and crack all of the eggs I am carrying. I am working on recognising the signs of life being ‘too full’ as opposed to ‘full’ and pulling back where I can, enlisting others help or letting some things go. I’m proud of how I am better managing this now, but still have some way to go. Setting realistic expectations of myself and others will be paramount in managing the load more effectively. As will knowing how and when to ask others to help carry some eggs.

PS. If your basket has space, please let me know!

Claire, Zoe and I attended the launch of the expansion to the Better Start for Children with a Disability Package this afternoon at the Cerebral Palsy League in New Farm, as representatives for Cri Du Chat Syndrome.

As I sat and listened to Senator Jan McLucas talk about the initial roll-out of the package, the difficulty of declining ‘ineligible’ requests for the package, the decision to commission an external review, and the more recent decision to expand the funding package to include another handful of syndromes and conditions, it was easy to imagine how I would be feeling if Cri Du Chat Syndrome had again been excluded from the list.

As Senator McLucas talked about research-based evidence being available to support the benefits of early intervention in children with the included conditions, I wasn’t sure whether to scream or cry. One of the most disheartening things for me since Claire’s diagnosis has been the lack of literature available and the lack of apparent research into Cri Du Chat Syndrome. There have been a few papers of interest that have been found, and minimal interest in the condition from medical researchers is evident. It was difficult enough to find out that Claire’s genetic makeup is atypical. Realising then that there is limited information as to what this actually means for us was even harder. However, we are very fortunate compared to other families. Many syndromes and conditions have a significantly smaller level of incidence than Cri Du Chat Syndrome. Some genetic anomalies are so rare, some unseen ever before, and so of course, there is no research. Many times, there is not even a name.

As I grappled with the emotions brought with Claire’s diagnosis, I found it really upsetting to find out that because there was no research, there was no access to this funding. It made me feel angry and frustrated, and I felt we were being discriminated against. It made me take action, and it gave me a focus for some of the anger and anxiety that was probably more to do with the diagnosis as a whole, than the sense that we were missing out on $12000 worth of therapy. I had letters to write, I had a story to tell, I had an opportunity to make a difference.

I never doubted that if the Better Start Funding were to continue, that it would be extended to include Cri Du Chat Syndrome. While the documented evidence that early intervention is vital is limited, the families that I have connected with across the world, provide evidence enough. If I had to, I was willing to collect and collate data myself to make a significant case to support this fact. Thankfully, the KPMG report found documented evidence for us. When I first read the report, I again was sure that Cri Du Chat Syndrome would be included, but I was extremely disappointed that there were so many other children that would still be excluded. I almost convinced myself that the package would be ceased for new families, due to the expense involved in its expansion, and due to the quite obvious discrimination that was otherwise likely to continue.

When the news of the January 1 expansion was released, I was shocked. I was happy for our family, and for other families affected by Cri Du Chat Syndrome. I was also happy for families affected by other conditions that would now be covered. However, I was frustrated at the continuation of a diagnosis-based eligibility criteria, rather than an assessment of needs.

Before the expansion, many Better Start-eligible families that we met were genuinely shocked when they realised Claire and other children with an obvious need for early intervention were ineligible for the package. They were unintentionally unaware. WE are NOT.

As a family who will now be eligible for this support, I feel that it is only appropriate that I will continue to promote the inequality of this package. I will celebrate this small victory and thank the government for ‘listening’, but I will continue to explain that they didn’t really hear us right. Use of a label to determine eligibility is the problem.

To other families with Prader Willi, Williams, Angelman, Kabuki Make Up, Smith-Magenis, CHARGE, Cornelia de Lange or Cri du Chat syndromes or microcephaly, I hope that you won’t forget the fight either, and that you will continue to do the good work you have done in advocating for children with disabilities. Just think how you would be feeling right now if your minority group was still missing from the new list.

I thank Senator McLucas for taking the time to make an official announcement of this expansion, and for acknowledging that the government haven’t yet got it right. She was certainly correct in saying that we are in dire need of an NDIS, however I do not believe that this is an appropriate answer for those families being excluded at this time. The time for early intervention is NOW. These families and children just cannot wait.

Claire’s early intervention program is certainly working wonders. There were signs aplenty as she showed off at the launch, but the most impressive moment was a timely round of applause (Claire only!) right after the senator listed the names of the syndromes included. The slow clap would have been gold had it been captured by television crews, but there must have been bigger news in Brisbane today as the media were notably absent. At least Claire managed to lighten the mood for the thirty or so people in the room.

If Senator McLucas takes us up on the offer to officially open our Cri Du Chat National Conference and Family Weekend in March, I will ensure we train her up on the correct pronunciation of the condition – Cree doo shar should do it…Repeat after me….;)

I just came across the Wikipedia page about Cri Du Chat Syndrome, a page I have not visited for a long time. Two years ago, I sat outside with Matt, and I read the text in somewhat of a daze, and looked at the images with tears my eyes. We had just arrived home from the doctor’s appointment at which we received the news of Claire’s diagnosis.

On that day, the images distressed me. Today, I expected something more horrific than I was presented with. They are the same images, but all I saw today was a happy little boy. He’s not someone I know, but he is a part of a ‘family’ to which I strangely now feel I am a connected.

It’s funny how perspective changes over time. I never want to forget how lost and hopeless I felt on that day, because on reflection, it is because of that memory that I am able to see how far I have come.

I have shared my disappointment in recent times about the lack of research and information available about Cri Du Chat Syndrome. Today, I read more about Jerome Le Jeune, who reported his discovery of Cri Du Chat Syndrome in 1963 – less than fifty years ago. How fortunate I feel to know that we live in the time post-discovery. I am also so grateful for the connectivity that is possible in this digital era.

As difficult as D-Day was, and as upsetting as the memories of that day may remain for years to come, I can today at least be grateful for this amazing scientist who gave name to this syndrome.

Thanks, Professor Le Jeune.

A picture speaks 1000 words, right? Look at my babies and how they have grown. I love them both more than I could ever express with words.

Cuddles for Claire, in her stroller which the Gold Coast Community Fund helped to fund.

Earlier this year, we were contacted by the Gold Coast Community Fund with the offer of support in covering the gap payment for Claire’s special needs stroller. We have felt supported by the Gold Coast Community Fund all year, with the appeals coordinator contacting us regularly to just check in.

This morning we were invited to Movie World to represent families who have been supported, for the media launch for the White Christmas charity night. Families in need have been invited to the White Christmas event next Sunday. This morning was wonderful and we are really looking forward to the main event! The best part about the evening last year was that our whole family could attend together. Both Callum and Claire enjoyed the light displays immensely, and of course they loved the ‘snow’ too!

The Gold Coast Community Fund are trying to raise their profile. They want Gold Coasters to know about them, to support them, and to be able to contact them for support if they are in need. The White Christmas Charity Night is their biggest event of the year, and in conjunction with this they hold their annual White Stocking Fund Appeal. Details on how to support this local charity, and on how to make a request for support can be found here.

This morning I explained to the Chairman of the Gold Coast Community Fund, Simon Bennett, that just knowing that our local community was enthusiastic about supporting us at a difficult time in our lives made a significant difference. The financial leg up was certainly appreciated, but it was the knowledge that strangers very clearly cared, that helped to give us the motivation to help others and make them feel the same way.

I was interviewed by Gold Coast Bulletin reporters this morning, and Matt did a great job with NBN News, but they seemed to chop his bits out! You can see us all here

Another meeting with Karmichael Hunt, Ambassador for the Gold Coast Community Fund

Cuddles for Tweety

Some serious requesting happening here

Hey, hey, it’s Sunny Ray!

New team photo

The Gutke Family

What would you do if you were the first kid into Movie World for the day, and no rides were open? Find a spot to watch TV was Callum’s solution.

Hanging out at Movie World

As part of the expansion of the Better Start for Children with Disability (Better Start) initiative, the Department of Families, Housing, Community Services and Indigenous Affairs (FaHCSIA), invited me to represent the Cri Du Chat Support Group of Australia at a stakeholder meeting in Sydney on Tuesday.

I was really excited to be given this opportunity, and with help from Mum and Matt I was able to juggle things enough to get down to Sydney in time to have lunch with my brother, to enjoy a little shopping at the QVB, and to enjoy a quiet dinner for one (yes, one!) on Monday night. The only disappointments were not having enough time to see my gorgeous niece and nephews, and having to say goodbye to these beautiful faces at Gold Coast Airport…

Tuesday’s meeting was informative, and I was given further information to pass on the families affected by Cri Du Chat Syndrome, which this morning I added to the group website. I was also able to meet the National President or another representative for each of the support groups for other conditions included in the expansion. This in itself was invaluable.

Led by the FaHCSIA Better Start Team, discussions took place regarding eligibility thresholds for each of the conditions, and I was interested to find out that Cri Du Chat was the most simple to accurately diagnose of each of the conditions covered in the expansion. Through microarray testing, the clinical geneticists present suggested that Cri Du Chat Syndrome could be diagnosed in 99% of cases. One of these geneticists was a familiar face, having given expert opinion of a DVD about Cri Du Chat Syndrome that was put together by one of our parents about 14 years ago.

When discussions turned to the age limits and syndromes for eligibility, I was able to share the disappointment of many of our families who had just missed out, and for our friends with other conditions who have not even had a look in for this package. I was unable to do this without choking up, but it was at that point that I realised that out of the 15 people in the room, I was the only parent who was personally affected by Better Start, both before CDCS was an eligible condition, and now that it is. Each of the other parent representatives had older children (15+) or adult offspring with the newly added conditions. They certainly had a raft of experience and passion to bring to the table. I decided that my contribution needed to be from my perspective as a parent still facing Early Intervention, and being early in my journey with disability.

Senator Jan McLucas was able to attend the meeting for a short time, and again shared some history of this funding package.  I was able to express the emotional upset of being told we were ineligible for funding due to a lack of evidence-based research, and explained that to a parent who is facing a rare diagnosis, this can be like a slap in the face. We discussed the importance of provisions being made to support further research. We also discussed the importance of succession planning for therapists specializing in Early Intervention for children with disabilities.

I am excited at the prospect of being considered to further represent Cri Du Chat Syndrome at future meetings and look forward to further raising awareness of the syndrome, and of the families who are affected by it.

Again, I thank each of you who has helped to raise awareness of Cri Du Chat Syndrome, as I believe that this has certainly contributed to the inclusion of our kids in the expansion of the program.

I know I’ve been AWOL.

When Callum started school, I was unexpectedly taken aback by the awful affliction of anxiety. Serious anxiety. The kind where your heart skips a beat, you breakout in cold sweats, and you curl up in a ball, anxiety.

I was done. I felt beaten. I was finally willing to accept that I was cri-du-f’n-shattered. Exhausted. Withdrawn. Banging my head against a wall (figuratively, not literally! One head-banger at our place is enough!) and needing help. 

…all this, two weeks out from the family weekend and conference that I was planning for 30 Australian and New Zealand families affected by Cri Du Chat Syndrome. At least life was interesting

When Callum started school at the end of January, I was reminded of how easy the whole process for him had been. I had completed his enrolment forms when he was six months old. I knew where he would go to school before he was born. I knew a handful of parents, students and staff at the school, I had his uniforms fitted months before his start date, and I knew he would be able to articulate any concerns that he had. All of a sudden, the uncertainties of Claire’s schooling hit me full force.

Where is Claire going to go? What support is she going to need? If I’m not there, how will I know about her day? How am I going to manage two drop offs and two pick ups, and find time to read two newsletters (perhaps Callum’s first newsletter of 76 pages was what sent me into this spin!!)??? Do I change Callum’s school? Do I try to keep them separated? Do we need to move house? Will I ever again be able to bring in an income? …?..?…?

To top that off, I had more ‘me time’. Time became available to ponder all of these possibilities and queries. While Claire napped each day, my head spun with the ‘what ifs’, the ‘how on earths?’, and the ‘if onlys’, that in the past two years have only had milliseconds to cross my mind, with the perpetually effervescent Callum by my side…in my face…and as the blissful distraction that I had somewhat taken for granted until he was gone….

He’s gone to school.

In what seems like my former life, I was a teacher, and for a couple of years, prior to the introduction of Prep in Queensland, I was a teacher of Year One, which was the first year of formal schooling.  My head says, “He’s just going to school”, but my heart has reacted so differently! Being on the other side of the classroom for the first time (as a parent), is quite remarkable. All of a sudden, the influence of a teacher on their students becomes much more obvious, and I am grateful for the advantageous start to school that my little man has been given. I miss him immensely, but I know he is in fabulous hands, and from the reaction that I have been having to his new situation, I think that school is likely a much-deserved respite from his sister, and his (neurotic) mother!

For Claire, selecting a school will be less simple. Like every step of the way with our gorgeous girl, it will no doubt be a decision that is pondered, and calculated, most likely right up until the few months before she is set to start. We need to consider whether full integration, partial integration, special education, or a combination of a variety of educational settings will be best for her. There are so many factors that need to be considered, including her mobility, her communication skills, whether she is toilet trained, and what is practically possible for our family.

For a mum with a history of logically planning her future wherever possible, and preparing for things well ahead of time, this has caused anxiety. But, symptoms of anxiety can be managed, and with support, finding the strength to push aside these worries for the time being can be possible.

Right now, I am finding my feet, accessing supports, and acknowledging the changes in my life that I haven’t necessarily invited, but I have accepted. My penchant for planning has taken a kick to the teeth, and my love of surprises has been embraced, with a new perspective of “que sera, sera; whatever will be, will be” (a song strongly laced with visions of my mother and I sitting at an organ in Innisfail, circa 1987, singing those very words – was this prophetic?! Perhaps just good advice in general!).

Long story short, I’m doing OK. I’ve missed blogging, I think it might help, and I will try to get back to it in some capacity at least J. I’ve never been short of things to say, but my journey with Claire has certainly shaken my self-confidence, and highlighting personal weaknesses certainly isn’t something that I would previously have chosen to do so publicly.

After sitting on this post for more than a fortnight, I feel that sharing this experience is more an indication of my personal strength than my weakness anyway . That’s my story, and I’m sticking to it!

Our family has recently made a big move, from the Gold Coast to Toowoomba. We have been here for almost a month now, and the change so far seems to have been a positive one.

Matt is thoroughly enjoying a new work opportunity, which has brought with it the chance to learn many new skills and a much needed change of scenery.He’s been spending some time in his old stomping ground, fixing motorbikes, riding them, and fixing them some more .

Callum has taken the change in his stride. The increased opportunities to hit the motocross tracks have no doubt helped him to see the positives . He does miss his old school and his friends and teachers, but has definitely seemed to make some new friendships quite quickly, and has been blessed again with two beautiful teachers. Having my mum in town has meant I have been able to more easily commit to helping in the classroom here too, which I am thoroughly enjoying. I have found the parents, staff and students to be very welcoming too.

Claire’s reaction to the move was initially rather unsettling for us all, with some extreme head banging which resulted in quite a bloody and bruised forehead. She spent the first week or two cuddling up to the drum that she was very generously given by our amazing music therapist, and beautiful friend, on her departure from the Gold Coast. The drum has been instrumental (ha ha) in providing adequate feedback to Claire in her moments of high stress. Ever the optimist, I must say that while I was saddened and stressed that Claire seemed to be so unhappy with the move, I was encouraged by the fact that she could recognise that things were different, and that she was attempting to communicate that she was stressed.

Claire is enjoying her weekly visits to the Early Childhood Development Program, which involve music, sensory activities and outside play. Through this program and through Baby Bridges, we have made some new connections and I am very excited that Claire has her first play date with some new friends next week.

We have met with the disability services team, and are hopeful of accessing some services via the state funded FECS team next term. We have been using our Better Start funding to access physiotherapy and occupational therapy, and have slowly begun making connections with the other medical professionals we need on our team to help care for Claire. It’s a busy time, but it has been refreshing to be able to share how far that Claire has come, when letting our new therapists know about Claire’s capabilities.

Since her adenoid, tonsil and grommet operation in May, Claire’s speech development has been wonderful. She vocalises so much more and is attempting more real words. We are also really excited about the efforts Claire is making to stand upright, pulling herself up at the couch, on her very special borrowed ladder, and on anyone who will stand still near her long enough, especially if you sing ‘Dingle Dangle Scarecrow’. She also now has her own crocodile walker, and has enjoyed opportunities to use this at playgroup, in the parks, and at the shops. I have recently applied for a disability parking permit which will hopefully make it easier to use the walker in more situations. She currently manages only very short distances, and it is a great challenge to carry Claire and her walker from car parks to flat surfaces conducive to the walker use.

For me, having my parents, grandparents, cousins, and school friends close by has been a huge benefit of moving to Toowoomba. I miss the friends I have left behind, but we have already had some lovely visitors and are expecting more in the near future. I’ve had one return visit to the Coast so far, and I took Claire so that we could squeeze in some music, some play dates, and a session at Conductive Education Queensland on the way home. We expect another trip that way soon.

There is just one week to go until school holidays, and I will be looking forward to enjoying the Carnival of Flowers festivities with both the kids. With the cold Winter days becoming few and far between, and the parks exploding with vibrant colour, the move to Toowoomba is continuing to feel like the right thing to do at the right time.

The night before Claire was born, I wish I knew that she was going to be born alive.

The day that we were given Claire’s diagnosis of Cri Du Chat Syndrome, I wish I knew that this diagnosis was going to result in me making some of the most beautiful friends I could ever have hoped to meet in my life.

When Claire was rushed by ambulance to hospital at six weeks old, and was back there again not long after her release, I wish I knew that things were going to get easier, and that hospital visits would soon be few and far between.

When I was weighing Claire on an almost daily basis, and stressing about her low weight, I wish I knew that the worry would soon become less intense, and that growing at her own pace, would be a more realistic expectation!

When I was feeling embarrassed at using sign language with a baby that wouldn’t even make eye contact with her mother, I wish I knew that Claire was taking it all in, and that it wouldn’t be too long before she started signing back to us to express her wants and needs.

When I propped Claire up on cushions for what seemed like the millionth time, I wish I knew, that in what seems now like no time at all, she would eventually be effortlessly pushing herself up into a seated position, and climbing up haphazardly onto our couch.

When everything got too much for one mummy to bear, I wish I knew that there would soon be brighter skies coming my way.

But, if I knew any of those things, at the times when I wished I knew them, my journey would not have been what it has been, and that would be a real shame. For as difficult as some of those moments in time have been, I really believe that they have shaped the person that I am today.

So, right now, while

…I wish I could know the exact moment my girl would walk out of that frame;

…and I wish I could know whether Claire will ever speak the words “I love you”;

…and I wish I could know what educational setting will fit her best;

…and I wish that I could know that there will always be someone looking out for her;

…and I wish that I could know that anxiety will one day be a problem in my past;

…I know that I can’t know these things for sure, and that there are so many other things that I can’t know for sure either.

But, what I DO know, is that all of these questions will be answered at some point along our journey.

And what an incredible journey this has been so far.

This kid has been breathing now for three whole years. And, while at times she has truly taken my breath away, I have managed to breathe in and out for that whole time too, and those breaths are finally becoming easier again.

Here are some birthday shots to celebrate Claire Matilda turning 3.

Our family has recently made a big move, from the Gold Coast to Toowoomba. We have been here for almost a month now, and the change so far seems to have been a positive one.

Matt is thoroughly enjoying a new work opportunity, which has brought with it the chance to learn many new skills and a much needed change of scenery.He’s been spending some time in his old stomping ground, fixing motorbikes, riding them, and fixing them some more :).

Callum has taken the change in his stride. The increased opportunities to hit the motocross tracks have no doubt helped him to see the positives :). He does miss his old school and his friends and teachers, but has definitely seemed to make some new friendships quite quickly, and has been blessed again with two beautiful teachers. Having my mum in town has meant I have been able to more easily commit to helping in the classroom here too, which I am thoroughly enjoying. I have found the parents, staff and students to be very welcoming too.

Claire’s reaction to the move was initially rather unsettling for us all, with some extreme head banging which resulted in quite a bloody and bruised forehead. She spent the first week or two cuddling up to the drum that she was very generously given by our amazing music therapist, and beautiful friend, on her departure from the Gold Coast. The drum has been instrumental (ha ha) in providing adequate feedback to Claire in her moments of high stress. Ever the optimist, I must say that while I was saddened and stressed that Claire seemed to be so unhappy with the move, I was encouraged by the fact that she could recognise that things were different, and that she was attempting to communicate that she was stressed.

Claire is enjoying her weekly visits to the Early Childhood Development Program, which involve music, sensory activities and outside play. Through this program and through Baby Bridges, we have made some new connections and I am very excited that Claire has her first play date with some new friends next week.

We have met with the disability services team, and are hopeful of accessing some services via the state funded FECS team next term. We have been using our Better Start funding to access physiotherapy and occupational therapy, and have slowly begun making connections with the other medical professionals we need on our team to help care for Claire. It’s a busy time, but it has been refreshing to be able to share how far that Claire has come, when letting our new therapists know about Claire’s capabilities.

Since her adenoid, tonsil and grommet operation in May, Claire’s speech development has been wonderful. She vocalises so much more and is attempting more real words. We are also really excited about the efforts Claire is making to stand upright, pulling herself up at the couch, on her very special borrowed ladder, and on anyone who will stand still near her long enough, especially if you sing ‘Dingle Dangle Scarecrow’. She also now has her own crocodile walker, and has enjoyed opportunities to use this at playgroup, in the parks, and at the shops. I have recently applied for a disability parking permit which will hopefully make it easier to use the walker in more situations. She currently manages only very short distances, and it is a great challenge to carry Claire and her walker from car parks to flat surfaces conducive to the walker use.

For me, having my parents, grandparents, cousins, and school friends close by has been a huge benefit of moving to Toowoomba. I miss the friends I have left behind, but we have already had some lovely visitors and are expecting more in the near future. I’ve had one return visit to the Coast so far, and I took Claire so that we could squeeze in some music, some play dates, and a session at Conductive Education Queensland on the way home. We expect another trip that way soon.

There is just one week to go until school holidays, and I will be looking forward to enjoying the Carnival of Flowers festivities with both the kids. With the cold Winter days becoming few and far between, and the parks exploding with vibrant colour, the move to Toowoomba is continuing to feel like the right thing to do at the right time.

I have been cleaning out old files on my computer this evening due to the arrival of that pesky Mac warning, “Your startup disk is nearly full”. I had to delete a significant amount of files to free up some memory. I came across a memory of my own. I have no idea what I have planned for the piece of text, as it was drafted well before I started this (now-very-sporadically-updated) blog, but nevertheless I did draft it, and didn’t delete it in the cleaning frenzy tonight, so I’ll share…

24th June 2011

A year on…

I’m busy, I know, but I’ve had to stop what I’m doing to spare a moment to reflect on the last year of my life.

Today, it is one year since I visited my obstetrician’s office for a routine check up to be told that the results of my 19 week scan were in, and there looked to be some ‘anomalies’ with our baby’s brain. Nothing to worry about, but worth having another scan to just check it out. Tomorrow.

The doctor who was standing in for my regular OBGYN did a quick scan there and then, and told me that my baby’s heartbeat was strong and that bub was moving well. He asked if I knew what I was having, and I told him that we hadn’t wanted to know, but I was fairly sure I did know after the last scan. After the news of her brain, I decided to confirm it, and I knew for sure we were expecting our little girl.

In the waiting room after my appointment, I was paying my bill, and the receptionists were booking me in for the tertiary scan, “just to be sure”. Tomorrow. Tomorrow? Just to be sure?

As I left the appointment, I called Matt to find out where he was working. I wanted to share the news that we were definitely going to have a daughter. A little girl. For sure. But….and there was a but. A little but, but it was still there.

The text ended there, but that day is now a vivid memory again. In typical Callum style, the kid was playing with the electric controls for the check-up chair, adjusting the height and angles as I lay there somewhat dumbfounded by the news of something being ‘not quite right’. I was also trying to process the thought that I would be having a little girl!

After the appointment, I popped in to see Matt at work. He could tell I was worried as soon as he saw my face. He kindly arranged to change his plans for the following morning to come with me to what was an even more difficult appointment. That was the day the walls came crashing down around us and the roller coaster ride well and truly hit a downhill plunge.

More than four years on, it’s funny how the memories come up to the surface every now and then. Sometimes when I see a photo, or remember another event from about the same time. Sometimes when I find a list of appointments, or look through Claire’s not-so-‘little’ red health record, or see an old blog post or letter I have written. Sometimes when other parents share their stories with me, my own memories and experiences bubble up to the surface.

Sometimes I feel my personal ‘startup disk’ is reaching capacity too. There are lots of memories that could probably be discarded to make life more pleasant in my headspace. But, without each and every byte, I would not have arrived right here in this moment.

….Hannah x

PS. Mum and dad, there were 26 memories made on Sunday afternoon that could happily be deleted…Empty Trash!

The crazy kid accompanying me to these appointments!

A photo a couple of days before the journey began. The start of my last week at work before taking some surprisingly well-timed long service leave, but sadly the end of my days at a school I loved.

When Callum turned 4, he started at Kindy. I packed his lunch, labeled all his belongings, and dropped him off after about 15 minutes in the room. He was happy, I was happy, and I knew his needs would be taken care off. If they weren’t, he would soon let me know!

He could walk. He could talk (and did a LOT!). He was toilet-trained. He could feed himself.

She can’t walk without significant support. She really doesn’t talk, but she wants to be heard. She’s in nappies, though she really doesn’t want to be. She tries to feed herself, but makes a huge mess.

It’s different. It’s scary. It’s hard. It’s exhausting.

It’s a totally different experience to the one I shared with Callum in 2012.

In so many ways, we are luckier than any other new kindy family. Claire’s new teachers have been visiting her at her Early Childhood Development Program since Term 2 this year. They have been interested in her arrival and enthusiastic about how they can support her. At the Kindy Open Day, Claire, Matt and I experienced the one on one attention of the Teacher Aide who will work with Claire in 2015. We felt supported, encouraged, and thankful.

But… then came the crunch. Time to talk money. Funding. It’s lacking.

Best case scenario, $6000 is available to support Claire’s inclusion. This is to support aide time, and any additional equipment that can not be hired or adjusted to suit her specific needs. If every cent of this goes to aide time, the most support that Claire could receive would be 3 and a half hours, two days a week. The full program is 6 and a quarter hours, five days a fortnight.

I’m frustrated. I’m not sure I have the energy to go to battle again. But, I know I have to. For Claire, and also for those families who are going to be faced with this journey in the future.

Disability doesn’t discriminate. We aren’t here because we ‘could handle this’. Perhaps we can handle what is thrown our way, and at times I am grateful for the confidence and intelligence that I have that allows me the strength to fight for equality for our daughter. I imagine I have those qualities in more amounts than some others parents who have a child with a disability, and I am thankful for that.

I’m really tired. I am exhausted at the thought of having to write letters and emails and to meet with politicians. I already have the feeding, charades, therapies, and nappy changes to deal with on a daily basis, four years on. On top of all I will need to do to help make Claire’s transition to KIndy a smooth one for her, the Kindy teachers, her peers, her parents, and the parents in the community, it seems unreasonable that I should have to fight for financial support as well.

The Queensland Government have been plugging their “Kindy Counts” campaign since 2009, with the aim being for all children to have access to a quality kindergarten program by 2014. They committed to ‘ensuring all children, no matter where they live or what their circumstances, have access to quality, inclusive early childhood education.’ Claire can not access a kindergarten program in its full capacity without full time support of a teacher aide or another support structure. I also feel strongly that her inclusion in a mainstream program will have significant benefits for the children and families who get to be a part of her story.

Let the battle begin.

People are contacting us asking how to help, and we are very grateful!

The short answer:

1. Share, share, share our posts and links on Social Media (and ask your friends to do the same). This truly has a genuine impact on any campaign. We have already been contacted by the Kindy Counts office regarding our posts to their wall and the interest and discussion that was being generated :). Thanks!!
2. Write an email or a letter. We need to draw attention to the bigger issue, beyond just getting Claire to kindy. Kindy Counts for ALL Queensland children, and we want to remove this obstacle from the path of families who follow a similar journey in the future. ASAP! There are tips on what to include below.
3. Make a financial contribution to the Everyday Hero ‘Help Get Claire to Kindy’ Campaign (Supported by Variety, the Children’s Charity). We are almost a quarter way to the goal, meaning that term 1 is good to go! We are sooooo excited that Claire will have the support she needs. If you know of a business who may also be willing to contribute, please share so that we might meet our goal even sooner.

The longer answer:

Just two days ago, a kind couple from Brisbane established a fundraising page to specifically raise funds through Variety the Children’s Charity to pay the shortfall required to allow Claire to have full access to her 2015 Kindergarten program with a full-time assistant. The cost for the assistant for the year has been estimated at $13662. The support provided by the Queensland Government is $6000. This leaves a shortfall of $7662. To ensure that the everyday hero charges are catered for, and to cover any additional equipment or resources that may not be available for the kindy to hire through Noah’s Ark, the goal has been set for $8500. The funds raised will be transferred directly to the kindergarten for use to support the cost of Claire’s inclusion support aide.

In less than 48 hours, the power of social media has assisted fundraising efforts to be almost enough to cover the entire shortfall for term 1! We are blown way by the financial contributions, and just as importantly, the efforts of our family, friends and community followers to share the link to the Everyday Hero page.

Our dream will be realised and Claire will be able to attend kindy full-time, increasing her opportunity for inclusion, thanks to the generosity of so many people who see the benefits of this for Claire and her wider community.

Our goal beyond Claire’s inclusion, is to change the way that inclusion support is funded for kindergarten programs in Queensland Kindergartens and Long Day Care Centres. The Queensland Government is so right in saying that Kindy Counts. Even more so, for children where a mainstream education could prove to be more difficult as they grow and the gap between them and their peers widens, opportunities for full inclusion at this level should be easy to access.

Petitioning State Parliament

As a family, we will soon meet with our state Member of Parliament, Mr John McVeigh, to request his support in petitioning the Queensland Parliament for change in current practices. Our meeting scheduled last week had to be postponed due to Callum needing unexpected surgery after an accident on his motorbike (he’s on the mend now!). We need the support of others to make this change so that all children can have a suitable level of assistance for their attendance at kindergarten, and that the process is equitable no matter what region of Queensland you live in, whether you attend a program in a branch or affiliate C & K service, or any other approved kindergarten program. We are not the only family facing this challenge.

We would like to encourage families in a similar position, families with children who access kindergarten or will in the future, aunts, uncles, grandparents and friends of anyone who will wish to access a Queensland kindergarten, and anyone else who supports the idea that a more equitable process is required, to write to your state member and also to the ministers listed below. This issue affects all kindy kids and families. The lack of funding is having a direct effect on the resourcing for children without a disability too, when centres are having to use  fundraising dollars and fees to cover shortfalls. Claire and other children with a disability will be using the paints, papers, sun sails, puzzles, etc too!

For those who have asked for the factual information required to include in these letters and emails, here are the key points for our personal situation, and some background information that may be of use.

• In 2015, we want Claire to attend the full kindergarten program (5 days a fortnight) at a local C & K Community Kindergarten (affiliate).
• The program is 32 hours per fortnight, and available funding supports only 14 hours per fortnight of aide time.
• The cost of the aide to be in attendance with Claire for the full program is estimated by the kindy to be $13662 for the year.
• The Queensland Government provides a MAXIMUM of $6000 towards this amount.
• Children with a Health Care Card (most children with a disability) also receive the Kindy Plus Subsidy, which reduces the daily fee cost to our family significantly (I think it costs about $5 per day for Claire to attend and about $30 per day without a HCC). – The irony in this is that they are almost fully subsidising a program that without a full-time aide, Claire is unable to attend. Ouch!
• Currently, any shortfall in funds available to support inclusion need to be met by the centre or organisation managing the kindergarten. This is problematic if centres consistently have children attending who require high levels of support. It is difficult for a kindy to exclude a child, as this of course would be discrimination, but a more systemic approach to funding is required to support kindergartens and day care centres.
• We recommend that the process be modified to support the full inclusion of all Queensland Children who wish to attend kindergarten.
• Disability is extremely varied, and not all children would require full support, however this needs to be looked at on a case by case basis.
• The benefits of attending Kindy will be enormous for Claire. We expect that she will have a significant increase in her communication skills, with constant exposure to peer language and activity. We expect her to be more motivated to participate and interact with others. We expect her motivation to walk to be further increased.
• For her peers and their families, and her teachers, having Claire in their lives and a part of their community is so important in encouraging inclusion, acceptance and respect for people living with a disability and for diversity. We know that so much can be gained and learnt from spending time with this amazing girl.

Please address your letters of support to:

• Minister for Education, Training and Employment – John-Paul Langbroek MP (education@ministerial.qld.gov.au)
• Minister for Communities, Child Safety and Disability Services – Tracy Davis MP (ccsds@ministerial.qld.gov.au).

Thank you again for your continued support!

We would not change Claire for the world,
but we will change the world for her!

People often tell me how amazing I am, and how well I ‘handle’ all of the responsibilities that come with being mum to Claire. They ask how on earth I find the time to advocate for her needs, but the truth is that I just don’t see it as a choice.

I don’t want ‘being a special needs mum’ to define me, anymore than I want ‘having Cri du Chat Syndrome’ to define Claire. It certainly is a part of who I am, but I have so much more to be and give.

When people comment about how well I take it ‘all in my stride’, I smile politely as I realise they haven’t popped in to our house unexpectedly, to find the chaos that ensues. Housework around here comes second (or third, fourth, fifth…). I feel so lazy and berate the boys for being so as well, but there really is so little time left each day to attend to thorough cleaning!

When people tell me how amazing Callum is with his sister (mostly in response to photos shared via Facebook), I agree wholeheartedly, but am reminded that they are definitely only seeing the highlights of this relationship!

When people comment on how far that Claire has come, I am always proud and encouraged. She truly has made great progress. I record her standing near a wall, and cut the clip the second before she spills awkwardly to the floor. We celebrate each tiny achievement and work to extend the duration of her efforts more and more each time.

Sometimes I look in the mirror and am met with a frightful image of myself. I wear bags underneath my eyes and my hair might be greasy and unkempt. These are not images I photograph to update my Facebook profile :). I save those updates for the days when I manage to find time to shower, apply makeup and get out of my PJs before lunch!

I have become a master at editing. I share our highlights and hide the moments where things don’t go quite as planned, and believe me, there are many. The meltdowns, the sleepless nights and the ‘toileting’ debacles that are too hideous to share with untrained eyes and ears, are saved for the out-takes roll, usually shared only with those I know will truly understand and not judge! Those who won’t relate these experiences to the person Claire is as a whole.

In my first year as a mum, I was very grateful to share the experience with a number of other friends who were novices too. The support was incredible. This time around, the friends who had newborns when Claire was new were almost immediately tracing a different path to mine. This was just the reality of the developmental delays we faced. It’s been bittersweet to watch her peers grow and achieve milestones so much faster than Claire.

I can’t edit everything, and sometimes I need to seek support. There are parts of the journey that we can’t manage alone, and that’s when we will share a little more depth of our story. Thanks for trying to help us navigate these obstacles.

The hardest part of this journey by far has been having our eyes opened wide to the fact that life is not always fair. There is nothing fair about illness that debilitates a child, or that takes their life.

Three years ago today, a gorgeous girl was taken way too soon from her beautiful family. Stella had suffered for almost a year from hideous seizures as a result of Mitochondrial Disease that presented shortly after her first birthday. Claire and I were lucky enough to cross paths with Stella’s journey through therapy the girls attended together. Once I met Stella’s mum, Chelsea, it was impossible not to become her friend.

Chelsea is a model of strength, composure and determination to me. She epitomised what I see as an incredible example of being a mother, and continues to do so with her two gorgeous boys and the precious bump on its way.

I have learnt so much about everyone’s problems being relative to their own situation. I have learnt how we all use the experiences of others to help us to feel more at peace with our own journeys. It’s natural to compare your existence with that of those around you. Chelsea once told me how much easier her journey has been than mine, because there was an end to the care-giving phase. I was astounded that that was her observation, as I could not have disagreed more. How blessed I felt to have our precious Claire with us, and how much my heart ached for Chelsea when she had to say goodbye. It still aches for her each time I think of Stella. I imagine her comments were more about finding justifications that would help her to move forward.

Beautiful Stella has had such an impact on my life. I couldn’t help but watch the grief unfold without feeling that it could have been us. Despite the false suggestions that Claire would likely not survive beyond four, until I followed the journey with my own eyes, I was unable to process the way that journey would play out. Stella’s story helped me to be at peace with the diagnosis of Cri du Chat Syndrome, and to become so very grateful for what this diagnosis would not mean for our family.

Stella has been such a gift to my life. Today I’ll do something special to remember this sweet girl. I’ll hold my kids just a little tighter. I’ll share the story of this precious family. I will send kisses and hugs to the stars.

Twinkle twinkle, Stella Grace,
We know you’re in a special place.
You’re missed each day by friends who know,
How hard it was for you to go.

XOXO