My Favourite Christmas Presents

I started blogging in order to share updates about Claire’s progress. I think I’ve gone off track a little, but for where this has taken me, I am thankful. During the last two months, I have been able to reflect somewhat publicly on what has been a complicated time in my life. It has been really therapeutic for me. If no one was reading, I still think that writing this down would have helped me a lot. I recommend this process to others too.

Turns out though, that people are reading my blog. In fact, it has had over 4000 views in the past two months. I am pretty amazed really! I figure some of these views are by repeat visitors, so perhaps 1000 people have visited? Even so, that is 1000 people who have heard part of our story, and who now know a little about Cri du Chat Syndrome. Also, if you keep coming back, I must be doing something right!!

So I plan to continue to share our story.  I plan to celebrate my daughter and her achievements. I plan to let others in a little as to what life is like living with genetic difference. I hope to break down some of the fears I know that exist in relation to disability and dispel some of the misconceptions. I think the fears exist mostly because of the ‘unknown’. I know that fear can exist, because I used to be very afraid…now I’m a little bit braver 😉

As for The Bear, well, I have to share her achievements of late because she is doing really, really well. I am so proud of what she can do, and thought that all my Christmases had come at once, when yesterday she sat unaided for about 30 seconds, lifted her hands up and began to clap, without falling over. We tried to catch it again on film. See the clip here on YouTube. Too cute! I’m a very proud mummy.

Over the last few months Claire has made amazing progress with her body. We have been attending hydrotherapy with Toni Fuller from Aqua-Moves. Toni uses principles of the Feldenkrais Method, a person-centred method which focusses on awareness of movement. I think that the hydrotherapy has made a significant difference in Claire’s ability to make her own body move in the way she wants it to. Claire’s sitting has improved immensely. After her first lesson with Toni she began rolling over multiple times. After two months, she will lay on her back and kick and arch, and she now is trying to lift her legs under her body. All good signs that one day she should be able to crawl and walk.

While I don’t believe that it has solely been the hydrotherapy that has seen such massive improvements in Claire lately (sorry, Toni!), I do think that it has certainly awakened something in her and given her a real awareness of her body. I also love that it is a therapy which Claire enjoys. She tolerates all of her therapies, but during hydro, in the warm pool, she smiles and giggles and makes all sorts of signing gestures and sounds. She often vocalises more in those sessions than she sometimes does in a whole day.

We have an amazing physiotherapist, Luke Newland (Physio4Kids), who has been working with Claire in our home since she was just 7 weeks old. Luke has shared a wealth of knowledge with us this year and has really helped us out in navigating our way through this new experience. Claire might not enjoy physio quite as much as she does hydro (sorry, Luke!), but she tolerates it and has made wonderful improvements from these sessions too. We really look forward to appointments with Luke, who is always so positive about Claire’s achievements and notices the tiniest differences, that sometimes we even miss. We really value Luke’s opinion and suggestions, and I know that his dedication to a high standard of care has been a very positive influence on Claire’s development. I credit Claire’s improved sitting to his work also.

While I’m praising Claire’s sitting and movement abilities, I have to give Conductive Education Queensland a plug again. When we first started, what I liked most  about CEQ was the classroom setting and educative model with which I was familiar and comfortable. Therapy was really a foreign concept to me this time last year, but in the conductive education classroom I felt a little more at home. I have noticed over the past few weeks, as Claire’s sitting has really improved, that when she begins to get wobbly, if I sing the conductive education tunes (or other sitting songs), she really seems to stop, think and correct her position, therefore sitting a little longer before crashing to the ground. Note: there is still a LOT of crashing! The songs and repetition are core principles of conductive education and are obviously something to which Claire is responding well.

It would also be remiss not to thank my gorgeous hubby Matt and our neighbour Stan for creating Claire’s custom built corner seat, allowing more comfortable sitting pra

ctice for Claire and helping her to sustain a sitting position for much longer. Thanks Cheryl and Mckenzie for loaning us your corner seat until ours was made!

So, in summary, you should know three things:

1. The Bear is AMAZING, and is getting closer and closer to independent sitting each day.
2. We really value the wonderful therapists and educators who work tirelessly with our little girl.
3. I’d like you to continue sharing our story, raising the awareness of Cri du Chat Syndrome, Claire and our fundraising event.

Oh yeah, I said presents… Callum bought me the bird cage necklace that he had wanted to get for me for my birthday in June. Matt had worked really hard to talk him out of it, and steered him to something he considered might be a little more ‘me’. As Callum was still going on about it last week, Matt gave in, and I just LOVE it. Purely because my boy picked it out! The earrings that he bought me have also been getting a workout – ice-cream cones, donuts, watermelons, strawberries, slurpees… I hope his tastes change a little as he ages, or he may not hold onto his girlfriends very long!! xox

I hope your Christmas presents were as happily received as mine 🙂

Callum

I am so grateful to have Callum in my life. This boy is an absolute handful at times, but he is so full of fun and life, that it is impossible not to smile when I reflect on his antics.

I’ve said before that we had concerns as to how having Claire in our family may affect Callum. This is something of which we really need to remain conscious. It is a tough gig getting a baby sister anyway (I imagine!), but add to that all of the attention she requires, and the amount of travelling and waiting, and keeping himself busy that Callum has had to do in order to cater to her special needs. Then throw in her picture on 400 recipe books seen everywhere, and now her picture on brochures and posters and it could be a certain recipe for sibling rivalry. For the most part, Cal has handled that all pretty well.

When I was working part-time last year, Callum was in daycare. To be truthful, he was never a big fan of daycare, though did have a fair bit of fun while he was there, and was always given lots of care and attention. My original plan was for Callum to continue in care for a couple of days a week this year, because I thought it unfair to drag him around to various therapies. I had grand plans that Claire’s appointments would line up with his days and on our other three days mid-week, we would be able to relax at home.

Like many of our plans, this one came undone. Very early in the year I realised that more often than not, if we were lucky enough to have an appointment-free day, it would fall on Callum’s daycare day, and I would feel horribly guilty for leaving him (I always have and possibly always will!) and would have picked him up after a very short day. I really, really missed him when he wasn’t with me. Then I would be dragging him out and about on the other days, and frankly, we’d all be exhausted.

The daycare providers’ summaries at the end of each day about the cute things Callum had said really made me think. ‘What if Claire never speaks?’, ‘Why am I letting someone else enjoy these moments when they could be mine?’.

It really was a waste of money that we didn’t have when I wasn’t at work, and while I was concerned I would lose our ‘place’ and have no hope getting him into care if I needed it, I took a punt and took him out. BEST. DECISION. EVER!

Callum has been my breath of fresh air. Sure, he has driven every one of Claire’s service providers nuts on at least one of their appointments, and at times I have needed to enlist the help of friends and family to help me out. Especially when I have attempted to work from home at times to earn some extra cash. But for the most part, we’ve had a lot of fun and he has been a gift to Claire.

As an infant, Claire took a long time to respond to anything. Trying to get a smile out of her was about as laborious as washing windows (I hate that job ;)). When Callum was around, Claire would light up. She would follow him around the room with her eyes and he was the first of our family to get her regular, glorious smiles. Claire just loves him, and his presence made everything easier to deal with.

With Callum around, it felt more natural reading books and singing songs and doing all the silly things we did to stimulate Claire’s little mind. It was fun! Any parent will know how important it is to read to your baby, and how strange that feels in the beginning when there might be no response at all. With Claire, it took soooo much longer for her to react to any of that stuff, and it would have been really easy to be complacent (or to sit on the computer googling Cri du Chat all day rather than getting in and interacting with my girl). Being complacent, or computer-bound, was impossible with Callum around, and I am grateful for that.

There were certainly times when I would see other special needs mums managing a whole lot more therapy with their kids than what I could with Callum at home. We made a decision that I didn’t want to constantly drag him around or dump him at friends’ places, and there are only so many days in a week. We are lucky for supportive therapists and teachers who have tried to include Callum as much as possible. Where that hasn’t been practical or possible, we have tried to enlist help of others, such as during hydrotherapy. I like to take Callum to these appointments and invite a playmate (and their parent to watch the kids!) so that Callum can see this as a special treat too. Thank you Maz, Laura and Sally for these occasions, and to the other friends who have offered to help out next year.

Callum says what he thinks. He is cute. He is a free spirit and he has a wicked sense of humour. He has an amazing imagination and loves to play make believe games. He had Claire lined up as Tinkerbell for his game of Peter Pan by the time she was a few weeks old!

As parents, we would admit that we have been a bit liberal and free-range at times over the past two years. Perhaps Callum could benefit from tighter reins… but, if the last year has taught me anything it is to avoid placing limitations on my children and their potential. I marvel at everything my kids can do. At times I cringe at what comes out of Callum’s mouth, but mostly I just smile, and hope that one day Claire will be amazing us with words too.

It has been a busy year for our family and no doubt life will get busier. I learnt too, to surround myself with people who love and accept my babies who BOTH are very unique :). I am excited about Callum starting in Kindergarten next year, and nervous about how much I am going to miss him. Maybe that is why he seems to have the most gifts under the tree!

Merry Christmas!!

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Stella the Star

For the last few days I have really had a hard time sticking to my 365 Grateful project. I’ve been almost sulking inside and feeling angry at the world since I heard that our gorgeous little friend from Conductive Education Queensland, Stella Grace Marshall, was given her angel wings way too soon. Stella was just 23 months old when she passed away in her Mummy and Daddy’s arms on Thursday night.

Stella was a fairly typically developing little princess until a couple of months after her first birthday. In April this year, she was rushed by ambulance to hospital and fought against the odds right from this point. Stella was diagnosed with a rare, debilitating mitochondrial disease. Her mum, Chelsea, tells the whole story in detail on her blog, and I would LOVE for you to take some time to read it and to send a message of support to their family at this very difficult time.

We met Stella at CEQ earlier this year, and as difficult as it has been to say goodbye, I am so very thankful to have had an opportunity to meet this little angel and her beautiful family. I have admired Chelsea’s positivity and determination in the face of an awfully difficult diagnosis. She was really determined to help Stella to be the best little girl that she could be, just as we plan to do for Claire. I also enjoyed seeing Stella smiling so beautifully with her eyes during these sessions. I loved watching her progress.

While Stella’s story is very different from Claire’s and we can’t begin to fathom how Chelsea and Scott and their families are feeling, we have shared part of the girls’ journeys and for that I will be forever grateful. Like Claire, Stella has touched so many people. Just as we are trying to raise awareness of Cri du Chat Syndrome, Chelsea and Scott have been trying to raise awareness of mitochondrial disease. Both of us had chatted about our strong little girls and the hopes we had for their future. We had also shared thoughts about how having these special sisters might affect our precious sons, Callum and Jett. It is grossly unfair that Stella had to leave so soon. It is so difficult to make meaning from a loss such as this.

Today, I attended Stella’s funeral. It was a beautiful service. Stella’s favorite music was played, treasured photographs were shared, the most amazing eulogies were read, doves were released and balloons bearing Stella’s name were given out to be released in Stella’s memory. Claire and Callum each released a balloon in our backyard this afternoon. When Callum showed disappointment at the balloon flying away, I told him it was a gift for one of God’s newest angels, Stella the star. We smiled.

I am grateful for that moment.

This sweet little girl will be missed by so many. xox

 

You can help to support Stella’s family and to raise awareness of Mitochondrial Disease by:

• Visiting Stella’s Facebook page and leaving a message of condolence.

• Making a donation to the Australian Mitochondrial Disease Foundation via Chelsea’s fundraising page.

• Reading Chelsea’s blog and sharing the link so that more awareness is raised.

• Donating to, or bidding on items in the Peekaboo Magazine Brisbane’s Auction for Stella.

Coming out of the genetic closet

Claire is tiny. I mean, yesterday, her GP asked if she was there for her 2 month or 4 month needles…she’s 13 months. Then I took her home and after a play in the sand pit, I bathed her in the kitchen sink. She could straighten her legs out in there! We notice her size the most when we undress her for a shower each night and she curls up onto Matt like a little frog. Nearly every day, we marvel at how small she is. She is currently under 7kg, a milestone her brother Callum met at about 5 months of age.

We are often asked if Claire was born premature, and there was a time when I used to just say yes, even though she was at least a week overdue. The constant barrage of questions in the early days was really draining, and some days I just didn’t have the energy and I wasn’t emotionally strong enough to be able to explain to people about Cri du Chat Syndrome.

When Claire was about 2 months old, I went to a local craft market. A kind stallholder offered me a seat when she realised that I needed to feed Claire. She tried to engage in some conversation while I was there, but between her and the lady at the next stall, and all the questions about whether Claire was premature, how early she had arrived, how much she had weighed, I was becoming flustered. I shut down the conversation, finished what I was doing and moved on. Later that evening a CDC mum from Melbourne with whom I had connected through Facebook responded to my check-in at the market, saying that her close friend owned a stall there. Wouldn’t you know it, it was the lady I had lied to about Claire being early! If I had been honest, this would have been one of the first real-life connections that I could have had with someone who really knew about CDC.

Like I said in my post about ‘D-Day’, the first time I shared that Claire has Cri du Chat Syndrome was REALLY difficult. I mean, like someone-ripped-out-my-heart-and-stood-on-it difficult. It was like that for quite a while. On that day at the market, I was feeling quite low. The crowds were overwhelming and the stress of my tiny girl not wanting to eat amidst the noise made things difficult to handle. It was like this a lot at the beginning, and still gets like that sometimes now.

Many times I was frustrated that I had to become an expert on something I knew nothing about, so that I could give random strangers in the street a genetics lesson. It bugged me immensely when people asked “Is it genetic?”, and clearly thought that the affirmative answer meant it was something I had knowingly given to my daughter. This honestly and truly could happen to ANYONE!!!

Slowly, Claire’s diagnosis has gotten easier to share. I sometimes felt as if lying about Claire was devaluing her as a person, but I think really I was just trying to protect us both. I still don’t feel it is always necessary to announce that she has Cri du Chat Syndrome either. CDC is not who Claire is, it is just something that she has.

Today however, I walked from shop to shop telling complete strangers about my beautiful little girl and asking if they could please help our family. Talk about swallowing pride. Talk about coming out of the genetic closet. This was a big step for me. The first few shops were hard, but after chatting with a few people and explaining to them a little about the syndrome, and getting encouragement and support from total strangers, I realised how much good is actually coming from this. This is really a chance to educate people; about Cri du Chat Syndrome and about disability in general.

We have learnt so much this year and it has been a lot to take in. I liked to think of myself as quite an accepting person, aware of diversity, but in many ways I think that in the past I have been quite naïve. I don’t think it has to take becoming a parent of a child with a disability to become aware either. While it hasn’t been quite as intense for my family and friends as it has for us, I am confident that most of them

would also admit to facing a somewhat steep learning curve this year in regards to disability. It really can happen to anyone at anytime.

Today, I was asking for assistance for Claire, but I was quite clear also about how important it is to us that this event also be about raising awareness of Cri du Chat Syndrome. I told people that if they could do one thing to help, it was to tell at least one other person about CDCS. Raising awareness could ultimately encourage the government to extend funding to reach all developmentally delayed children, in an equitable manner. The Rubenstein-Taybi Support Group produced a fantastic clip that explains why The Better Start Initiative represents exclusion, rather than inclusion. If you haven’t seen this, I would really appreciate you taking a look.

I have had to let go of the notion that I can change the world. For now, I have to focus on changing our situation. We need to embrace the amazing opportunity that we have been given, and work to prepare an amazing fundraiser that will support Claire’s effective early intervention.

Sharing Claire’s story several times a day is no longer difficult (most days). It can be emotionally exhausting, but the encouragement of others and their willingness to share with me some of their own life experiences in return has been refreshing and rewarding.

If anyone would like to help spread the word about this event and ask local businesses for assistance, I would love the company. 🙂

Thank You Conductive Education Queensland

Yesterday we had our final day for this year at Conductive Education Queensland. After our Early Intervention session, there was an assembly and awards ceremony for all of the children who have been involved with CEQ this year. After singing the national anthem and a few other songs played by Ros on the guitar, each of the children received an award for their hard work at CEQ in 2011.

We also enjoyed a shared lunch and the opportunity to talk with other families who are finding this program so beneficial. The whole vibe of the day was very special and we are so glad to have been able to be involved in the first year of what I am sure will be many in this successful educational setting.

I am really grateful that we were told about Conductive Education Queensland. The whole approach of conductive education fits nicely with my own background as a teacher. I like the holistic approach to therapies and know that the repetition is of great benefit to our special children. We sing songs and do lots of movement. Claire practises her sitting, rolling and standing. In fact, I would say her best sitting is done at CEQ. I think she likes to do what the other children are doing. If you would like to find out more about Conductive Education at CEQ, I suggest you read here.

When asked if it is worth driving to Brisbane for this program (which is not available on the Gold Coast), my answer is always a strong yes. In fact, I am looking forward to taking Claire once a week next year rather than once a fortnight, and I would love for her to be able to attend even more often. The program in itself is beneficial, and being able to regularly meet with another child with Cri du Chat Syndrome and his Mum has also been invaluable. I really treasure the friendship that has blossomed. I am sure that Claire’s teacher, Mrs Demack, has enjoyed this too, but would probably have preferred us to chat a little less during class time! 😛

After yesterday’s celebration, I am even more adamant that this is a place with which I would like Claire to remain connected. The older children all seemed so happy, and it was very evident that the managing director and teacher, Annette Demack, and the other directors, Jody Florance and Angela Polkinghorne, were so very proud of each of these children, and of what they have achieved in the first year of CEQ also; and very rightly so. Thank you so much for your vision and hard work. I believe that Conductive Education is going to be of great benefit to Claire and many other children with special needs. I look forward to the 2012 program and Claire’s regular attendance.

I also want to say a big thank you here to Annette and Adrian (and Amy yesterday!) for catering so effectively to Callum’s needs through his individualised siblings group. He has really enjoyed his time at CEQ in 2011 too. To Natalie and Laura, thank you also for all you have done. Thank you to Zoe and Cathy for sharing your knowledge of CEQ with our family.

See you all in January!

PS. To beautiful Stella and Chelsea… we missed you very much yesterday and hope to see you back at CEQ in the new year. oxoxoxo

PPS. It is wonderful that Conductive Education is recognised by the federal government as a worthwhile therapy so that children eligible for The Better Start funding (not Claire 😦 ) can access support for this program. Now we just have to work on getting our private health insurance to recognise it…

Saltbar Lunch

We are extremely excited to announce that Saltbar in Salt Village, Kingscliff have heard about Claire and will be hosting a fundraiser in February to raise money to help support her special needs. Saltbar will be ringing in celebrity guests, comedians and maybe even a very special keynote speaker (still to be finalised so we have to keep identity a secret) but most importantly regardless of celebrity, this is a day for Claire. Tickets will include a delicious seafood buffet, a three hour drinks package, entertainment, and most importantly money from every ticket will go to helping our very special little girl.

There will be auctions and raffles to help raise even more funds, so if you or your business have something to donate that we can raffle or auction please contact us at clairematilda@me.com or contact Katrina Dudley, Marketing Manager at kdudley@saltbar.com.au. Any item or service can make a real difference so please dig deep.

The event will be held on a Friday Lunch (most likely the 17th of February, though this will be confirmed by December 9th so please keep watching this blog and www.saltbar.com.au for more information). Tickets would make a great Christmas present – a great day out while helping Claire! Mantra on Salt will be offering accommodation packages to ticket holders who wish to stay over night.

We thank you for your support and look forward to seeing you there!

Hopes and Dreams

From the moment we knew Claire’s brain was developmentally delayed, we started to begin a lot of sentences and thoughts with ‘what if…’.

What if our baby doesn’t survive?
What if our relationship doesn’t survive?
What if Callum misses out on opportunities because he has a sister with special needs?
What if our baby needs around the clock attention and care?

What if we can never go camping?

When Matt threw that one in, I laughed. Then, when I realised that camping was his image of us as a family, I cried. Who was I to laugh at his dream? What if….

Before Claire, I wasn’t aware that I had the lives of my children pretty much plotted out for them from the minute I knew they were on their way (and possibly even before). It wasn’t until that dream was well and truly ‘rocked’ that I even knew it existed.

I didn’t realise that I had already pictured my then-non-existent daughter’s wedding day. Not until my colleagues shared photos of their daughters’ weddings, or until I listened to my aunt give a speech at my cousin’s wedding, and I cried.

I didn’t realise that I must have had some image formed of my daughter singing in school musicals or performing on stage, because every time a kid opened their mouth to sing, or did something of which I felt their parents should be really proud, I cried!

Without even knowing it, I had formed images and expectations, hopes and dreams, of what life was going to be like for my children, and for us as a family. I still have hopes and dreams, but I have just had to alter them a little, and I have been served up a big slice of reality which has made me realise that planning out anyone’s life, even in your mind, is somewhat delusional! I certainly would never have expected that Matt and I would be parents to a child with Cri du Chat Syndrome. There was no family history to suggest it might happen. How could we ever have predicted this?

There is a sense of grief and loss associated with becoming parents of a child with a disability. There is plenty of documented evidence around to let me know that it is not just me losing my marbles over here, and that is encouraging!

For me, the sadness for our ‘loss’ is totally separate from Claire. I am not at all sad that she has come into my life. I have NEVER been sad that Claire is here. It is really difficult emotionally to acknowledge a loss and to grieve something that is not tangible. It seems wrong to mourn a ‘dream’, something that never existed. I have found this exceptionally difficult for two main reasons: Firstly, what right do I have to cry when my gorgeous girl is here, alive and thriving in her own way? We have met so many people on our journey who have not been so fortunate. Secondly, I know it is so hard for anyone who has not experienced this sense of loss to understand that I am NOT sad about Claire. This is absolutely separate from her, and I never want anyone to misread the tears of grief and believe them to be for any reason other than the loss of those dreams.

As for the ‘what ifs’:

Claire did survive and is going to thrive.
Our relationship has been strengthened and we’ve learnt not to sweat the small stuff.
Callum has had so many wonderful opportunities already just because of his sister and her condition.
We are managing to get some much-needed sleep.
And most importantly, we have been able to enjoy a number of family camping trips since Claire’s arrival.

Another area of progress is that my eyes stayed dry at the last wedding we attended (except for the tears of joy when I saw my beautiful friend looking adoringly at her new husband). I also managed to sit through most of a local ‘talent’ show on the weekend, and I was suitably unmoved. Lol.

I will not put limits on my daughter. Cri du Chat Syndrome has already done enough of that. It is my job to help her to be the best person that she can ever be. I also know that we want Callum to be the best person he can be too, and we will guide him as best we can and and hope that he makes good decisions and choices throughout his life. Of course I still have hopes and dreams for my children and my family, but now I know that they are just that; hopes and dreams. I can not predict the future, but I can enjoy the journey.