Dreaming of a White Christmas

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

Growing together

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.

September 2010

October 2010

November 2010

December 2010

January 2011

February 2011

March 2011

April 2011

May 2011

June 2011

July 2011

August 2011

September 2011

October 2011

November 2011

December 2011

January 2012

February 2012

March 2012

April 2012

May 2012

June 2012

July 2012

August 2012

September 2012

October 2012

November 2012

Jerome Le Jeune

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.

D-Day reblog…it’s that time again

D-Day is fast approaching. Is this a day we should celebrate? Like a second birthday each year? Or is it a day that will eventually fade in significance for me? Time will tell.

My first reblog… Here are my thoughts on D-Day last year.

Claire Matilda

Today is D-Day. Diagnosis Day. On this day last year, we were given the news that our beautiful, perfect baby girl had a rare genetic disorder called Cri Du Chat Syndrome. I have actually been dreading this day for a while, wondering how I might feel about it, and what memories might be brought to the surface. Particularly after I found the month leading up to The Bear’s birthday quite confronting. Anxiety would kick in whenever I reflected on what it was like waiting for her arrival, not knowing what might happen at or after her delivery, and secretly being terrified that things might not turn out ‘fine’ as I had predicted to everyone who had continued to offer their prayers, support and concern regarding her delayed development in utero.

Now we are here. One year on. A friend who is only a little way ahead of us in this…

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Not quite right yet, Senator McLucas

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….;)

Full is way better than empty

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!

A note from Claire’s Nanna on her 2nd birthday

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!!

Hanging out with Ronald

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