Cri-du-Shattered…in a good way!

If you asked me how I was feeling last Sunday, the answer was “Cri-du-Shattered”. The inaugural International Cri du Chat Awareness Week was busy and exhausting! It was also very uplifting and inspiring. I talked about CDCS even more than usual and caught up with 12 families in person, 2 more over the phone, and lots more on Facebook. I shared our brochures at kindy and at therapies, and made key rings for families affected by CDCS. “Cri-du-Shattered” just popped out when I tried to describe how I was feeling. I like it and I think I’m going to be using it more often! As a group, we were certainly successful in attaining the support of newspapers across Australia, and all around the world, due to the hard work and persistence of many families. It was wonderful to see so many families sharing their personal stories, many for the first time, to raise awareness and to give our kids a voice. It would have been wonderful to secure some TV or radio time too, but these can just be goals for next year :). On Saturday, we celebrated at Paradise Country with SIXTY-SIX PEOPLE who are directly affected by Cri du Chat Syndrome. 13 people with Cri du Chat, ranging in age from 10 months to 27 years, were a part of this number. The rest were parents, grandparents, siblings, aunts, uncles, cousins, friends and carers. This number in itself reminds me that we are not alone. Something to really celebrate was the family who attended from the Tweed who contacted me after reading the Sunday Mail news article. Saturday was their first meeting with any other families with CDCS. Their son is 14.

The Gold Coast put on some beautiful weather for our day out. Paradise Country staff members were very accommodating and most guests enjoyed the barbecue lunch after a morning tea that was generously donated by Brumby’s at Upper Coomera. I was so busy chatting that I didn’t see any of the shows and only took a quick stroll with Claire through the animal farm on the way out. I’m sure this was the case for many of our families! Perhaps the most positive part of the whole week for me, was seeing the enthusiasm with which families approached the task of raising awareness, and seeing the unity that is growing in the global Cri du Chat (5P-) family. Once again, I am thankful for Facebook in assisting these connections to be developed and maintained. I am now even more enthusiastic about the planned family weekend for May 2013. I am a little concerned that with the growing interest, we may soon outgrow the venue that had been selected! This of course is wonderful news and I look forward to sharing updates as our plans become more concrete. We want the weekend next year to be a valuable and rewarding experience for all families involved, and we want as many families to be able to attend as possible. For our day on Saturday, we had two families travel significant distances from interstate to join the celebrations. Our youngest new friend was the beautiful Miss Ella, who had travelled by car for three days to meet us all! I was fortunate enough to share some time with her family on Friday too. It was nice to pass on the torch to a new tiny person who is the first person with CDCS that we have met who is younger than Claire…Claire is growing up! 😉 Ella is adorable and we wish they lived closer!

 

Thank you so much to all of the friends and family who changed their profile picture to reflect that they were raising awareness. Thank you to those who shared links promoting CDCS. Thank you to those who spoke about CDCS (or Claire) during the week to someone who may not have been aware that this disorder even existed. Thank you also to those who donated to the Cri du Chat Support Group of Australia.

So…while I was “Cri-du-Shattered” by Sunday, it was an amazing week and I was really proud to be a part of it. I hope you were too :).

A Happy Mothers’ Day

This week is International Cri du Chat Awareness Week, and I will be trying hard to spread the word about Claire’s syndrome with the support of family, friends and the rest of you! Thank you in advance 🙂

Today was Mothers’ Day. Making the choice to forgo “gifts” and enjoy a night away from home with my family instead, was great medicine. Lately I have been feeling a little overwhelmed, and I could feel that spending some time just concentrating on ‘us’, away from all of the distractions and never-ending to-do lists was much needed.

Funnily enough, I have been back at the to-do list from the moment I got home, and as such, I am exhausted. However, I wanted to share some photos from our weekend.

I love being a mother and have learnt to appreciate that role so much more in the past two years. I was desperate to be a mum when we were trying to fall pregnant with Callum, and wasn’t sure it was ever going to happen. I was so excited to be expecting a baby and couldn’t wait to meet him or her. He arrived and brought such love and fun into our whole family. Callum is truly a character and while boisterous, cheeky and sometimes just plain wild, he manages to charm (almost) everyone in his wake. I love him to bits, with all my heart. Before bed, he told me he loved me with all of his toys…that’s A LOT!

Miss Claire Matilda has awakened in me an even deeper love than I had even known existed. It did exist, and I do feel the same for Callum, but Claire has just slowed my pace in many ways and I now notice just how deeply this love runs. We are just so aware of how fortunate we are to have her in our lives. While some might think we got a raw deal, I know that we just got really lucky. I have learnt so much already from this tiny little person, and I know that there is so much more ahead. I shared the most amazing cuddle with my girl on the couch after Matt and Callum had both headed off to bed. We locked eyes for a long time and I just soaked up her whole being. Her innocence, her sweetness; and she’s mine.

Becoming a mother gave me a whole new understanding of being a daughter. On my first Mothers’ Day, I had a ‘wow’ moment. I realised why my mum was so mum-like 🙂 . Since news of Claire’s challenges, I have also realised how difficult being grandparents has been for our parents. Not only because they were worried about Claire and how she might be affected by her differences, but because they also had to shoulder the worry of how all of this was affecting us, their children. They couldn’t ‘fix’ this as they had done with my problems in the past. Thank you Mum (and Dad) for supporting in the ways you can.

I am a very lucky lady to be in my (very) early thirties and to still have ALL four of my grandparents alive and relatively well. I send much love to my Grandma and Nanna today too. Perhaps for them, the challenges are even greater – they have had Claire to think about, and me, and their own children. I was able to spend lunch today with Nanna and hope to visit Grandma again very soon. Xxx

Happy Mothers’ Day to all mothers out there. I hope you were celebrated today. Special hugs to my friends who faced challenges today remembering mothers and children who were unable to celebrate together.

Parallel Lives

I often thank my lucky stars that particular people have come into my life, some just right on cue. I have had the privilege and pleasure of meeting many mums in the last two years who also have a child with a disability. I am lucky to be able to call a few of them close friends. Finding Zoe, mum to Jimmy, has been a true blessing and something for which I will always be grateful.

Today, the Sunday Mail U Magazine shared a story about Zoe and me in their ‘parallel lives’ feature. While our families’ stories are very different, we certainly share commonalities. This story came about due to the media release that we put out to promote the upcoming inaugural International Cri du Chat Awareness Week. The article is meant to raise awareness, but also to let existing and new families affected by Cri du Chat Syndrome know that the support group is once again very active.

In the past year, with the support and encouragement of each other, we have managed to establish an active Facebook group for Australian and New Zealand families as well as giving the old website a very new face. This month we will also host our second Queensland Family Day, and we have big plans for a family weekend and conference on the Gold Coast next year. Without Zoe, I am sure that I would not have had the enthusiasm to keep going with what have sometimes been time-consuming and tedious tasks.

While I would love you to read the article here if you haven’t already, I would also love to further share a little about a friendship for which I am truly grateful. In fact, it was Zoe who suggested that we start the 365 Grateful Project.

Zoe first made contact with me via a Facebook message in February last year, when Claire was 3 months old and Jimmy was 7 months old. We sent a few messages back and forth before meeting at the house of another family affected by CDCS a week later. This was to be my first face to face meeting with anyone else with Claire’s condition, and there were going to be a few families there. I was nervous to say the least. Zoe’s messages helped to put my mind at ease and she assured me that if I did fall apart, it wouldn’t be unexpected (I didn’t, by the way!)!

When we did meet face to face, I was encouraged by Zoe’s positivity and happy nature. We got along quite well and had lots to talk about. I also fell in love with Jimmy almost immediately! His vibrant little personality shone through in his cheeky smile and cute little noises that day. It gave me hope that The Bear might soon be interacting similarly with us. At this time she was still fairly non-responsive in many ways.

Not long after this meeting, Zoe and Jimmy came to visit us at home. Jimmy rolled all about our lounge room while Zoe and I talked…and talked…and talked J. Jimmy pulled Callum’s hair, something for which I don’t think he’s ever been forgiven! Callum roared like a lion at Jimmy, who cried, and I’m pretty sure he has never forgiven Callum for that! For several meetings after that he cried at the very sight of Callum! We spent a lovely afternoon chatting and I was really happy that Zoe and Jimmy were still there to meet Matt on his arrival home from work. Matt had not met any other ‘special’ families or children by this point and it was great to see him to be able to chat so candidly about the syndrome and Jimmy’s progress with Zoe.

 

I can’t explain the strange feeling of seeing other children who look so much like your own, but who aren’t related. Claire and Callum definitely looked similar, but so did Claire and Jimmy. Even Callum got confused by photos at times! Zoe and I have had Claire and Jimmy out together and have been asked if they are twins. I found it very difficult at the start to see the faces of many kids with CDCS who bore resemblance to my girl, but with Jimmy, as I got to know him, I found it quite sweet. I don’t notice the similarities as much anymore, but that may just be me. They definitely still look a little alike, but I think I see past the features of the syndrome now and appreciate more their own unique personalities.

As I previously mentioned, it is really nice to have had Zoe involved in the reinvigoration of the Cri du Chat Support Group of Australia.  While at times I was full steam ahead on web development, Facebook groups, and meeting new families, there have been times when my enthusiasm has waned and I have had neither the energy or inclination to do any of it. Zoe has taken control at these times and given me the push I have needed to get back at it. It helps that we have fun together too and have both found it rewarding to interact with other families.

Another wonderful thing about my friendship with Zoe is that her husband, Rob, and Matt also get along well and have lots of common interests. We have had the pleasure of a family camping trip together, birthday celebrations and recently Zoe and Rob attended A Day on the Deck for Claire. This was a significant gesture in itself when they too face similar financial challenges.

The distance between our houses would be about an hour and a half on a good run, but we meet weekly at Conductive Education Queensland for early intervention. Most weeks, it is just Jimmy and Claire in their session, which is really lovely for us! We also try to catch up after the class for a cuppa and a chat when other appointments and cranky children don’t inhibit this plan.

Jimmy is an amazing kid. He is making remarkable progress with his ability to move, crawling at break-neck speeds and walking like a little old man behind the walker at CEQ J. It is wonderful to watch. His progress reminds me of Claire’s potential. Even more amazing, is his developing vocabulary. I’d be guessing, but I think I have heard Jimmy say at least ten words. He babbles a lot too and Claire loves listening to him. They really do seem to adore each other…they’re besties of course 😉

I look forward to watching Claire and Jimmy grow together. I am really grateful that against the odds, we have found a family with a child very close in age to Claire, and that we all get along so well.

Claire’s new wheels

Yesterday we were very fortunate to pick up Claire’s much anticipated new set of wheels from Special Needs Solutions. The girls there have been a real pleasure to deal with and yesterday was no exception.

We took Claire’s ‘Stingray’ for its first proper test drive today while visiting a little friend at the Mater Hospital. Callum was very intent on pushing for quite some time and was really very successful at taking control. This demonstrated the ease with which it moves. I think it might take a little longer for him to learn how to collapse it and to fit it effectively into the boot of my car! It took me just a few minutes to remember the last step 😉

Callum’s driving was being heavily supervised, not only with the safety of his sister in mind, but also with the safety of the stroller being high on the list of priorities. I wasn’t even willing to take the stroller out of the house until I got confirmation it was covered on our home insurance policy – the piece of equipment is possibly worth more than my car! The final cost of Claire’s new stroller was $7620. While we expected a gap of between $2000 and $3000, a thorough application by our physiotherapist saw the Queensland Government Medical Aids Subsidy Scheme (MASS) cover $6764 of this, leaving the gap at ‘only’ $856. We were also very fortunate to have the support of the Gold Coast Community Fund who met that entire gap.

In January, we were contacted by the Gold Coast Community Fund who had heard about our efforts to raise funds to cover the cost of some of Claire’s current equipment and therapy needs. The Appeals Coordinator, Col Torrington, came to our house to meet Claire and our family and to determine how this group could help. He suggested that the Gold Coast Community Fund might be able to help us to cover the cost of the gap for Claire’s stroller.

I accepted an invitation to speak about Claire, her condition, and the affects on our family at the breakfast launch of their 2012 Art Union. I was humbled by the invitation, and a little nervous…particularly to find out I would speak following The Gold Coast Suns (ex-Broncos) player Karmichael Hunt!

At the breakfast on 14 March, we met some inspirational people and also heard first hand how the Gold Coast Community Fund had helped so many individuals and families already. I spoke about some of the challenges that we face and about the difference that the new stroller will make to Claire’s ability to be out and about and part of her community. I shared our hopes to raise awareness of Cri du Chat Syndrome and reflected on all of the things that Claire CAN do. I felt honoured to have another opportunity to tell more people about this amazing child that we have been lucky enough to bring into the world.

We were very surprised to receive an iPad for Claire that day, something we were very keen to acquire to support her speech acquisition and development of her motor skills. The $100 iTunes card that was also gifted to us that morning was used towards the $200 App, Proloquo2go. We have started to use this with Claire and I am sure I will have some news of its success to share with you soon. A fuel card The Gold Coast Community Fund was another generous gift that we truly appreciate and that has significantly assisted covering the costs of our regular travel to Brisbane and around the Gold Coast.

The Gold Coast Community Fund has significant sponsorship from Harvey Norman Bundall, The Gold Coast Bulletin, 92.5 Gold FM, Grand Motors Toyota, Surfers Inkspot Printers, and OMB Solicitors. We were also very pleased to hear of the connections being made with the Gold Coast Suns. Matt and I enjoyed chatting with Karmichael Hunt and his girlfriend after the formalities. An explanation of this link can be viewed here, on Suns TV. Karmichael is sure to be a great ambassador for the group.

If you are given the opportunity to buy tickets in the art union, you will have the chance of winning some amazing prizes. You can also know that the money goes back into helping families like ours and many others. The Gold Coast Community Fund support charities, community organisations and individuals in need.

Thank you Gold Coast Community Fund for assisting our family and for helping to get Claire out and about, into hers.