Why blog?

Yesterday I responded to an invitation to speak to a class at the Indiana University of Pennsylvania, USA. While I wish I was there in person, it was via Skype :).

Over ten years ago, I spent a semester at IUP on student exchange. I lived on campus and made some truly beautiful and long-lasting friends. One friend from that time was Nancy, who was actually the supervising teacher at my pre-service teaching placement at the university school. We had a lot of fun teaching her kindergarten students about Australia, particularly through Aussie picture books. I just loved the accents on those cute little four and five year olds!!

Nancy now works with the college students since the closure of the university school. She is currently teaching a class about children with disabilities in pre-school classrooms. My understanding is that many of the students are disability services majors, studying social services degrees or similar. In short, my role was to give them the perspective of a parent in this group and to share some of my initial experiences with them. They had been following my blog and those of other special needs parents as part of the course work in lieu of a textbook.

Prior to the chat, Nancy sent me a list of questions – 35 of them! They covered all sorts of areas, some about routines and therapies, and others more personal. One question that got me thinking was surrounding my motivations for blogging.

Honestly, when I set up the WordPress site as a launch pad for our friends and family to Claire’s fundraising account and the information on the Cri du Chat Support Group of Australia website, I explicitly told Matt that I had no plans to ‘blog’ other than to perhaps provide semi-regular updates of Claire’s progress. I was already feeling overwhelmed by the feeling of never having enough time to do everything I needed and wanted to do.

A couple of established blogging CDC mums (OK, moms) contacted me when I set up the site and let me know how great they thought it was that I was blogging. One shared my site with her followers and I thought….oh dear…I must make their trip worthwhile!! I shared a little bit about Claire, then my plans to start the 365 gratefuls project on her first birthday, then news of the celebration, then…. D-Day. I think this was about the time I started to feel the therapeutic benefits of the blogging experience. I really shared what to me was by far one of the most intimate moments of our journey so far. The response of support I got from this, was extremely uplifting.

I often feel bad/dishonest saying that this is ‘Claire’s blog’, because in reality, it is more about me! It is certainly about the ‘me’ I have become since having Claire in our lives, and about the new perspectives I have gained on life and love and motherhood and humankind and gratefulness and EVERYTHING!

There are a few reasons why I really want to keep blogging and sharing our story. Firstly of course, is to celebrate Claire Matilda, our amazing and inspiring daughter. Secondly, is that I think that blogging is about the cheapest therapy for me that I am ever going to get! I mean, I share a few thoughts, come to a few conclusions, make a few plans – then, I get feedback by way of likes, comments, emails and phone calls that provide encouragement, support, empathy and perspective. All from the comfort of my own home! Thirdly, perhaps my blog could help another parent new to their journey with special needs. I was and am so encouraged by the posts of other blogging parents and I hope perhaps my words might one day comfort, encourage and support another family.

When I pondered the question of my blogging motivation, fear was also something that came to mind. I believe that our life experiences change us. I believe that it is impossible for events in our lives to not impact how we view ourselves, others and the world around us. As much as I love Claire with all of my heart and soul, and want nothing more than to be her mother, having her in my life has certainly presented me with new challenges. I have said on a number of occasions that the last 18 or so months have been the most difficult of my life so far, but they have also been the most fulfilling. I have felt myself begin to change, and my fear is of any distance coming between myself and others.

Before I was Claire’s mum, I was quite hesitant about asking people about differences and disabilities. I was most certainly tolerant, but just naïve to so much and I would say a little ignorant too. I wasn’t going to ask questions, perhaps for a fear of exposing my own lack of experience and knowledge about disability. Perhaps it is just me that feels this way, but in case it is not, I want to make sure that other people know it is ok to ask me questions, and to read about new things (such as Cri du Chat Syndrome!) to further your own knowledge and understanding.

At the moment, I am hoping that much of my blog audience is people just like me – 2 years ago. People whose lives haven’t been directly effected by disability, but that might now learn a bit more about the challenges individuals and families experience, and the amazing contributions these individuals and families can make to their communities. I don’t think that as yet I have much to offer to special needs parents as I really lack experience in this position! However, one day it will come :).

If you want to know something, please ask. If you can, please talk to other people about Claire and the other children whose sites I share on her Facebook community. We want to raise awareness, improve services, and avoid isolation!

Yesterday, I got to spread Claire’s story even further. Thank you Nancy, and thank you also to your very welcoming students. I hope that the visit was beneficial for you all and that the accent wasn’t too tricky to follow (at lightning speed!). I am fairly sure there were a number of blank faces when Callum chimed in too! He was very excited to tell Matt last night that we had been to America. Another busy day 😉

PS. Nancy…I think those who commented on Claire’s Community should get extra credit ;).

Paying It Forward

This evening on the wall of the Community of Claire Matilda, I shared a link to a status update from Isla’s Fight with High Risk ALL. Many of you might recall voting for Claire to win a bunny last Easter from Jo at The Faraway Tree (which she did by the way – thanks!)? Well, shortly after that, Jo shared the sad news that her gorgeous niece, Isla, had been diagnosed with High Risk Acute Lymphoblastic Leukemia. I have been following their difficult journey through chemo and in and out of hospitals ever since. This beautiful little girl is such a trooper and it has been easy to fall in love with her sweet smile. Her mother Sharon’s openness about their journey is also inspirational.

Today though, Sharon’s post was extra uplifting:

We were touched by the kindness of a man at the shopping centre this afternoon- after seeing Isla and Liv being silly outside of the shoe shop (where I was buying new school shoes) he walked up to me and said he would like to pay for them, asked if Isla was treated at 3b and went on to say his own son had been treated there for two years and he knew the struggle it was, he told me to keep the change and gave me $50 on top of all that! I could see the agony in his face when he said money can’t buy everything and I would have spent a lot more in the store had his son survived this horrible disease. Made me tear up full of happiness and sadness at the same time. Bless your caring soul and your little fighter watching down from heaven. Thank you xxx

Doesn’t that just give you goosebumps?

Claire with her bunny from the Faraway Tree on her first Easter 🙂

While preparing for Claire’s Day on the Deck I was thanking a friend profusely for her very generous donation of a gorgeous photography package (Kylie Maree Photography – divine!). I knew that this donation would involve lots of time on her part as well as the costs involved in production of the photos. Kylie has her own young family and is very busy with her business too. Kylie said to me that she was more than happy to help – she had had a lot of great support from friends lately and wanted to ‘pay it forward’.

I just love that. I think as I have grown as a person, I have realised the importance of paying it forward, rather than just paying it back. I also don’t expect anything in return when I do give of myself to others (most times!). I realise that while we have received so much generosity from family, friends and strangers during our lives, there is no expectation that we pay it all back, and I don’t just mean in the monetary sense. Aussie pride has been a hurdle we have had to tackle in the past two years. We just flat out realised that to give Claire all of the opportunities that we want to, we need help. We have learnt to accept that help in order to be able to enhance her life and the quality of life for our whole family.

I’ve written before about my school staff and close friends cooking meals for us in the darkest hours of our journey with Claire. I talk about it often because it seriously had such a significant impact on our lives at the time. I think also that it was an easier gesture than some to accept, perhaps because it was something I had done for others in need at various times myself. It is also something that I have managed to do since Claire came into our lives. To me, cooking a meal is a small gesture that just means so much. There is something about a home-cooked meal that just oozes love, friendship and support.

After our big event, I have an urge to help others as we have been helped. Truth is, with the busy schedule we have created to support The Bear, my time for enormous gestures and the availability of ‘spare’ money to fund grand schemes is limited. But I do intend to pay it all forward. In this lifetime :).

I hope that if you like this blog you will become a liker of the Community of Claire Matilda on Facebook. In that space, I have enjoyed sharing links to stories of other families we have met along the way who are also facing challenges. I feel like I can pay it forward a little by sharing their stories. We have had the opportunity to meet some amazing and inspiring people because of Claire coming into our lives. In one short year, I have seen determination, strength, and grief beyond my imagination. It has been so difficult to see people suffer in a way I never had cause to acknowledge, purely because I was just pretty much oblivious to it all. But at the same time, my life is so much more fulfilled having met these children and families.

I feel like it is really important for these people to have their stories heard. I’ve become a bit of a serial ‘share button user’ on Facebook of late, but I just love the exponential power of it all. I share it on my wall with maybe 100 views; then maybe 10 share it on their walls with 100 views; then a few more shares…and voila! So many more people have the opportunity to experience the richness of these stories and so many more supporters are reached. The nature of hitting ‘share’ works in a similar fashion to paying it forward, also based on exponential growth. As we meet new families, they also introduce us to more new families and I wonder how on earth I have been so naïve in the past!

So, I’ll continue to share our story and those of others, and hopefully you will continue to share those links too. Our community on Facebook is growing, but the community that has developed around us in the ‘real world’ is remarkable, and we are feeling it. So thank you, and I promise I will pay forward some of the kindness that has been extended to me as the opportunities arise.

Mmm…

This week Claire had a speech therapy appointment. It was an afternoon appointment after we’d already been to music, Claire hadn’t had more than 20 minutes sleep all day, and as we began the appointment I noticed her mouth was bleeding from problematic molars cutting through. Let’s just say it wasn’t the ideal beginning to the session and Claire was acting like a grizzly bear for a while there.

However, Miss Claire is quite used to having to step up to the plate even when she doesn’t feel like it, to complete her sessions of speech, physio, music, hydro and conductive education. I usually try to let her have a little nap and be well-rested, but things don’t always work out ideally when you try to make appointments around a little girl with very irregular day sleep patterns.

She does get tired…just fights sleep!

 

Anne (Claire’s speech therapist) found a toy that Claire had liked on our first visit. The ball rolls down tracks, back and forth, until it rolls over a little xylophone at the end. Claire was so cute as she turned her head side to side to follow the ball.

As each ball finished, we encouraged Claire to ask for ‘more’. Claire does sign for more, but we are really working on adding voice. After several repeats of the action and word, and some hand over mouth prompting, Claire made a tiny ‘mmm’ sound! I was so excited! I clapped and squealed and probably scared Claire (and Anne) half to death!! In fact, I did recall to Matt afterwards how Anne then really stressed the importance of remaining calm and allowing Claire the opportunity to continue with the sound practice. Oops. Lol. Point taken and lesson learnt.

Right now though, I’m still absolutely smiling inside and out at my clever little girl, who so deliberately, with intention, made a ‘mmm’ sound for the first time. She wanted more. And, while I’ve learnt not to scream with excitement (poor Claire was totally stunned and absolutely lost her focus!), I DO reserve the right to make a silent fist pump and to beam from ear to ear when it happens again. And it WILL happen again. I just know it.

Learning about Cri du Chat Syndrome has for us been simultaneously encouraging and heartbreaking. From what we have learnt, it is likely that Claire will eventually stand, crawl, and walk, though it may take quite some time and she will likely always have balance issues. However, speech development is less of a surety. Some people with this condition never speak or manage only a handful of words. Others manage to speak much more. There is heartache involved in pondering whether our little girl will ever talk to us with words. She has been such a quiet baby and barely made any sounds until recently when she has begun to call out a bit more. This seems to take lots of effort and her whole body tenses when sounds are produced.

Sometimes you need extra encouragement and hope to help you think positively. Cue Olivia. A number of months ago, I talked with an American CDC mum on Skype – Tiffany. I had been chatting with her for a while via Facebook and I’d been gaining support from her blog, and I was really keen to talk ‘face to face’.  Her daughter, Olivia, was 10 at the time and for some reason I was quite intrigued by her and felt compelled to chat with them more. Perhaps it was her dark hair and eyes that allowed me to imagine Claire at the same age, or maybe it was just that age ten was just far enough away to feel not so real to us yet. Or maybe it was just a connection I felt from reading the beautiful blogs of this mum who is also a teacher.

Olivia

 

While I was talking with Tiffany on Skype, Olivia came in and said she wanted to talk too. She said hello and I replied with a greeting and asked her how she was. Olivia said, “Wiggles! She sounds like the Wiggles!” This to me was really impressive!! How amazing to connect my accent to the Aussie Wiggles, and better yet, I was able to understand exactly what she was telling me. Olivia then went on to tell me she was watching Looney Tunes and we talked a little about that. She really made me smile :).

This week Olivia’s mum has been blogging about Olivia’s improved fine motor skills and how she has been practicing her ‘autograph’. It is worth sharing the link here because this is a great achievement that is well worth sharing worldwide. Great work, Olivia! Once again, I have been encouraged by your example.

So, we’ll continue to work on speech with Claire and hope we’ll continue to get some intentional sounds. We will also still use Key Word Signing to assist communication and we are trying to add more signs to our repertoire. Choice boards and a Pragmatic Organisation Dynamic Display (PODD) communication book are also methods we are trialling. The iPad will be another resource we will introduce more as Claire develops.

For now, we enjoy our lovely conversations of raspberries and kisses, and our increasing vocalisations of ‘ahhhhhhhh!’. Claire manages to get her message across a lot of the time and we will do all we can to help make this as effortless for her as possible. With Matt, Callum and me in her family, she will certainly have plenty of exposure to all kinds of language, and plenty of it! 😉

Callum helps Claire with her PODD Communication Book

PS. If you could go over and ‘like’ Claire’s Facebook Page, I would really appreciate it. Please share it with your friends and continue to raise awareness of Cri du Chat Syndrome. You don’t have to be our personal friend to like the page, and we can’t see any of your info, but you will see updates of Claire’s progress and this site 🙂

A brief reflection on A Day on the Deck

I’ve made a little promise to myself to pause for a bit and to take a break of a week or so to just spend time with my beautiful family. I have so many thankyous that need to be addressed and I really want to do them justice. I also have spent so much time over the last month getting ready for A Day on the Deck, that I want to just enjoy being with my family.

160 people came along to celebrate our amazing little girl on Friday, and countless others sent their support through kind messages, purchase of tickets, donation of prizes and money through Claire’s Sunshine Butterflies account. While the thankyous will take me a little while, I really want to share a little of what this weekend was like for me and for our family now.

Friday was such a wonderful, happy celebration. After only an hour, my face was hurting so much from beaming… and that was before the auctions! As the guest list for our event built, so did our excitement for what we knew would be a wonderful day. When we realized that we would know so many of our guests, we were so aware that it was really going to be a day of celebration. A celebration of Claire and her achievements so far. A celebration of what we have achieved already as a family. A celebration of the support and encouragement that we are so lucky to have in our lives.

The food was delicious, the drinks flowed freely, Steve Allison was hilarious and kept it (mostly) clean when he realized after a quick survey of the crowd that it wasn’t the boys’ lunch he had expected! Wayne Bennett was as inspirational as I had hoped for. I’ve spoken to many people about his talk, and they all thought he was taking about them and their lives. For me, the whole way through Wayne’s talk I was thinking how much I would appreciate having him as a coach for myself. His football analogies really mirrored much of the challenges we face as a family and he really has a wonderful way of coaching and inspiring others through his well-chosen words.

The atmosphere on the deck was fabulous. It was a constant hive of activity with painting, prize giveaways, auctions, silent auctions and people depositing their multitude of tickets into the cent auction boxes. As the formalities wrapped up, it was so nice to see so many people we know and love walking away with some great prizes and purchases. So lovely to see the smiles too.

With a busy weekend of socialising with the friends and family who had travelled so far and stayed on to show their support, it wasn’t until late Saturday night that I had my first moment alone and the enormity of the whole experience hit me. A few tears rolled down my cheeks, but not of sadness. We are just so fortunate to have such great supporters and we are so lucky to have our beautiful Claire in our lives.

Matt and I have described Friday as like our wedding, only better. Not only did we have so many of our long time friends there, we also had a whole lot of people there that we have met along the way, since we got married.

We know that with Cri du Chat Syndrome will come many challenges for Claire and for us. However, knowing how many people we have by our sides to support and encourage us is what has given us the strength to get on with life and focus on helping Claire to reach her full potential.

We will have a lot more to share about A Day on the Deck once we let the enormity of the day sink in and manage to collate our thoughts effectively to be able to do justice to thanking so many people.

For now, just know that the day was amazing for us, and if you were able to be there, we hope you felt that feeling too 🙂 .

PS. If you were there and took ANY photos, please email me at clairematilda@me.com. We’d love to put together a photo collage or book as a memento from the day.