Archive | November, 2012

Dreaming of a White Christmas

30 Nov
Cuddles for Claire

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

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

Cuddles for Tweety

Cuddles for Tweety

Some serious requesting happening here.

Some serious requesting happening here

Hey, hey, it's Sunny Ray!

Hey, hey, it’s Sunny Ray!

New team photo

New team photo

The Gutke Family

The Gutke Family

What ould 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.

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

Hanging out at Movie World

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Growing together

18 Nov

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.

Jerome Le Jeune

17 Nov

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.

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Thanks, Professor Le Jeune.

D-Day reblog…it’s that time again

15 Nov

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

14 Nov

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….;)

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Full is way better than empty

11 Nov

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

8 Nov

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 60th 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!

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

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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!!

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