Archive | January, 2012

Growing Our Community

22 Jan

Growing up, the value of community was given importance. My parents have always established and maintained close links with our extended family, their local communities, work communities, church communities and more recently, global networks. In December we celebrated my parents’ 40th wedding anniversary. It was great being at the party and catching up with all of their friends, many of whom have been a part of their life, and in turn my life for a very long time.

Events of recent years have also really reminded me of the importance of family. It has been great having support from immediate family members, but also from my aunts, uncles, cousins and grandparents and extended relatives – some who we have never had much to do with prior to the arrival of Claire.

I have always enjoyed making new friendships, but I also appreciate and value friendships from long ago. One of my oldest friends (from Grade One!) and her husband are making their way all the way down to the Gold Coast to share Claire’s special day with us. A number of friends from primary school and high school have also been working hard to help us to prepare for this event.

At university, I made more friends, including many from the USA and beyond when I studied abroad over ten years ago. I cherish their friendships and love it that they check in on how our family is doing and offer words of encouragement for us all. One kind friend even offers to shop for items that I place on my wish list and an unable to easily obtain in Australia!

When I began teaching, my penchant for making friends was no different. I have had the privilege of calling many of my colleagues my dear friends. I meet regularly with an amazing group of friends who started as my colleagues, but we haven’t worked together for many years. Some of these friends have become our greatest supporters. I have worked in amazing schools where community is central and we have appreciated support from colleagues, as well parents, students and the wider school communities.

Matt also had his own friends from before our days together, and we have strengthened many of these friendships as a couple, and also formed many new friendships, particular with our neighbours past and present. While I often complain about the amount of time spent chatting on the street and the continuous visits we have at our home from the current street crew, I will admit that I enjoy the sense of community that has been formed and I am very grateful for the support that we have had, particularly in times of emergency.

Last year, as our journey into the special needs’ world began, I was amazed at the immediate sense of community that was felt in many of the groups of which we unexpectedly became a part. At a time when we have relied on the support and advice of others, we were able to find people all over the world who were willing to help – some via Facebook, others in local groups, and some through their willingness to share their own experiences and stories through their blogs.

There are many circles of friends in my life. Many friends have come and gone, as often happens. I have been so humbled by friends who have become practically strangers through disconnections over time, who have stepped forward and offered their support to our family through words of encouragement, financial support, the purchase of tickets, and other offers of assistance when they have heard about our beautiful daughter, Claire Matilda.

As we prepare for The Day on the Deck for Claire, we have been introduced to a whole new community of people who want to offer their support. I want to be clear that the support we receive has taken many forms. Posted words of encouragement when we share an update of Claire’s development, a phone call from a friend ‘just checking in’, recommendation of a therapy or service that might be of benefit to our family, and sharing Claire’s story and information about Cri du Chat with even more people are just some of the ways that we have been supported. We realise that not everyone is in the position to attend Claire’s fundraising day or to offer financial assistance. We totally understand what it is like to have limited funds and we would have found it a difficulty to financially support anyone else even before we were unexpectedly down to one income for longer than expected. Your financial support is not something we have ever expected. We are so grateful for the financial support that we have been given, but every bit of support and encouragement that comes our way is very much welcomed.

I have recently had a number of people who are interested in following Claire’s updates and news of her blog updates and have requested to be added as personal friends on Facebook. I’m a fairly open and sharing person, but I also feel that the time has come to separate my personal page a little from the amazingness that is Claire Matilda ☺. When the Day on the Deck is over, our need for support will not be. We are going to need our supporters for many years to come! So…. If you are a Facebook user, we would love for you to visit a new page that I have just created. I’ve called it:

Community of Claire Matilda

Whilst a subtle difference, I have not called it a Community for Claire Matilda. I really thought about this a lot. I want this page to be a space where Claire’s achievements can be followed by those who wish to stay in touch. I want it to be a place through which we can gain messages of support. I also want it to be a place where we can provide support for other people in Claire’s community (therefore our community).

So, please head on over and help us grow our community of support, the Community of Claire Matilda.

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Breathing, Swallowing, Flying High

21 Jan

I am on a high. This week ended so much better than the last.

On Thursday, Callum and I attended his kindy orientation where we met his lovely new teachers, checked out the brand new kindergarten and met some lovely children and parents who will be a part of our community this year. It was really very reassuring to see Callum respond so positively to the staff, surroundings and other children. I am sure there will be some hesitation when the time comes to be left alone, but at least I know he felt happy there and I’m sure that in time he will settle really well. His first official day will be next week.

Kindy Orientation

 

Yesterday, we went to Conductive Education Queensland in the morning. Claire was a little irritable but did some great moving about. What made me smile the most was when her little friend was crawling all about her, I could see her efforts to try and move like him. Her legs came up under her body and she made noises of effort. Claire Bear wants to crawl.

On one hand, this can make me a little sad, in that she is still far away from this milestone that a typical child would have easily reached over 6 months ago. It reminds me of her physical delays and the struggles she will have ahead. On the other hand, it made me feel so wonderful to see that she really wants to do as other children do, and that she was trying with all of her might to do it. Our little girl will crawl one day, and I will be over the moon when she does. She is just so determined (like her mum!).

In the afternoon, we had the fabulous team from Special Needs Solutions, Tiffany and Maureen, come out to our home with our physiotherapist (Luke from Physio4Kids) to trial some specialised equipment for Claire.

First, there was the Jenx Monkey Standing Frame. Claire stood upright in this frame, and it brought a tear to my eye. When Claire was strapped in and was tilted upright, she smiled and waved her arms in excitement. She clapped her hands and giggled. If it weren’t for the crowd of people in the room and the fact I knew a news crew was on its way to interview me, I’m pretty sure I would have just let the tears flow! It was a really amazing moment to see her upright and so happy about it.

This frame gives Claire significant support. It will help to develop her strength and stability, and we hope that it will enable her to learn to stand and walk, even earlier than we ever imagined possible. It should help with her reflux, and also help with her bowel issues. The absolute best part about it is that it has given Claire a whole new perspective on her world. This morning I strapped her in after breakfast and she again laughed and smiled – especially when I moved her in front of our window. Claire’s never been able to just watch out of the window unless she has been in our arms. It was a really special moment.

Neighbourhood Watch

Our house is full of cheeky monkeys!


We were also fortunate enough to have the opportunity to trial two new strollers that might be suitable for Claire. Due to her low tone, Claire requires additional support to sit comfortably and appropriately unaided. She needs to be encouraged to position her body effectively. These strollers assist with the positioning, and provide significantly more support for Claire than a regular stroller. They enable Claire to practice correct sitting whilst getting out and about and exploring the world.

From the two strollers we saw yesterday, we chose the Stingray to trial for one week. We took it out to the shops today to test it out. I wanted to do it when I had Matt around so I wasn’t panicking in the carpark about how to collapse the stroller! I must say it was very impressive in the way it moved around so easily! Even a shop assistant noticed the ease of movement and commented. I was happy with this conversation as it also highlighted to me that it ‘passes the test’ as looking much like a ‘normal’ stroller. Blending in is not my biggest motivator for selection, but I think at times this would certainly have its advantages.

Claire really enjoyed the ride today and we think she appreciated what a great view she had. The Stingray is essentially a chair on wheels and she could see all around herself as we walked through the shopping centre. It also managed to pass the ‘nap test’ as she slept for almost an hour as we walked around.

If we do choose to purchase a Stingray for Claire, it is something that will grow with her for many years to come. While we are hopeful that Claire will walk, and hopefully by around 4 or 5 years old, we are aware that for some time after that she will still most likely require the support of a stroller on occasions when we are out for extended periods of time. Callum, for example, was walking by one, but has used the stroller (or a shopping trolley) as recently as last month when he has tired during shopping excursions, appointments, or day trips and he is almost 4. Claire realistically may require a stroller or a wheelchair for many, many years to come. This one could essentially suit her until her teenage years (with an upgrade to a size 2 seat somewhere along the line). Which is just as well, as the cost is around $7000! Some government funding will be made available, and the gap is estimated to be less than $2000…let’s hope significantly less!

The Stingray

The reason I am on such a high today, is that I realise that it has been through the sharing of our story and the requests that we have made for assistance that we will be able to provide our daughter with these items. They are not life-saving pieces of equipment, but they are certainly life-enhancing. We are determined to give Claire EVERY opportunity that we can manage in order to reach her full potential and we believe that these items will help with her development. After her road tests yesterday and today, we also believe that they can enhance her quality of life – she is so happy! We are so happy! What more could we want?

I was very nervous about the local TV news coverage from our home yesterday. Speaking on TV about Claire and Cri du Chat Syndrome and sharing information about our disappointment in government funding packages that exclude our daughter was very daunting. This time last year, I really didn’t want people to know that we had a child with a disability. I certainly didn’t expect to be advocating for better funding for her needs and those of her new friends. I also didn’t expect that I would be in newspapers and on TV with my gorgeous girl.

However, we have been given such an amazing opportunity here to make a difference in Claire’s life and to encourage other people who are facing challenges in their own lives, whatever they may be, by making them aware that there are people out their who are really willing to help. You just have to take a breath, swallow your pride and be willing to accept the support.

I’m breathing, I’m swallowing, I’m humbled and I’m grateful. Once again, thank you for helping to enhance Claire’s life. It gives me goosebumps when I realise just how very fortunate we are. And while this was never a road I would have ‘chosen’ as my life’s path, it is only because I didn’t know how enriched and blessed I would feel. I just feel so damn lucky today.

Thank you for that xoxox


PS. I am also very excited because we have only two weeks to go until A Day on the Deck for Claire. We are aware of so many who are unable to attend due to work commitments and distance and we wanted to share the love…. soooo stay tuned for some exciting news in the next few days about an online raffle we will be holding. I’ll spread the word on here and on the Facebook event page. We are just sorting through the plethora of prizes and trying to decide which we should use for this raffle (requests will be considered 🙂 – email clairematilda@me.com).

To purchase tickets to A Day on the Deck, click here and fill in the form, and Annette or Katrina will contact you on Monday. For further ticketing options, see the Ticket Order Form.

My Connection to Holland

17 Jan

What seems like a lifetime ago, I was pregnant with Callum. OK, so it was only 4 years ago, but I think it seems like a lifetime ago because my world has changed so absolutely since becoming a mother. Matt and I often question what on Earth we did with ourselves before Callum and Claire entered our world. My guess was lots more sleeping, lots more lazing about and much more of other stuff that I won’t detail on here. Last year, I again questioned what on Earth I did with my time before I took Claire to therapy for seven hours a week. It turns out that no matter what we are faced with, we seem to make the time, and no matter how much time we have, we seem to fill the hours and the days. Anyway, it seems like a lifetime ago when Matt and I were at our antenatal classes, excited and a little anxious too, about the imminent arrival of our first child.

During one of those classes, we were given a print-out of a story to read. This story was called “Welcome to Holland”. I actually just got chills thinking about that night. You see, this story was one that is well-known in Special Needs circles. It is shared often on Facebook groups and blogs, and referred to at seminars and workshops made for people who are…well… just like me.

Thing is, when we were given that piece of pink paper just over four years ago, I never dreamed that one day we would actually be arriving “in Holland” unexpectedly ourselves in the not-to-distant-future. If you have never read this story by Emily Perl Kingsley, you may well be thinking I’ve finally lost my marbles, so I suggest you take a break to read it here, or watch this YouTube version that was shared with me on Facebook yesterday, and then return!

OK, so are you with me now?! 

When Matt and I left that night, I remember talking about that story in the car driving home. It really had struck a chord with us both. I actually thought it was a strange thing to share at that class, when the odds of having a child with special needs were so low (right?).

Weeks later, our healthy baby boy arrived and our holiday in Italy began. We forgot about Holland, and enjoyed watching our little boy develop into the cheeky little sprite that he is :). We agonized over his poor sleeping patterns at times and took him to sleep school to get help to get him into a routine. I laugh about that now, but I know at the time it was awful having a non-sleeper and that I was on the brink of depression should I have been unable to get that help. Problems are truly relative, and this is something I have reminded myself of a number of times this year as I have listened to the woes of others and wanted to ask, “Really????!!”, and also as I have felt guilty for complaining about my own situation when I know that there are other people who would love to be in my shoes (or clogs).

So basically, we forgot all about Holland… that is, until the day we were told about Claire’s underdeveloped brain. Matt said to me late that night “Remember that story…”. I’d already Googled, read and refreshed my memory. “Welcome to Holland” gave us both a glimmer of hope. I am so grateful that our ante-natal class coordinator had thought to include this in their material.

When we received Claire’s diagnosis of Cri du Chat Syndrome, I shared the story with some friends and family. I wanted them to know we were going to be ok, but I also wanted them to know that at times, I wasn’t.

About six months in, another Facebook share uncovered this: Amsterdam International. Dana Neider (blogs at Uncommon Sense) talked so openly and honestly about the difficulties and confusions that face parents when they are first arriving in “Holland”. She uses the metaphor of being stuck in the Amsterdam Airport. She has some valid points. Emily Perl Kingsley really didn’t mention how much it can SUCK (My friend Andrea did 🙂 in her blog, Life with Cri Du Chat, and I applauded her for it!)! Emily didn’t really talk about the pity parties, the terror of marriage breakdown, or the guilt that comes with wondering what if you never arrived in Holland after all.

At around that six month mark I did feel like some days I was totally confused as to how to get out of the airport and to actually move on and begin to enjoy the tulips and windmills and to help to develop my very own Rembrandt. I was beginning to get sick of being strong for everyone else and spending all of my energy holding it together so that I could avoid a pity party or avoid making my friends and family feel sad. I was also already head-over-heels-in-love with the most amazing little girl to EVER enter my life, Claire Matilda.

I am really grateful for both of these authors. I appreciate them sharing a part of their story so that I could come to terms with ours. What I love most about them both, is that while they both clearly describe the feelings of grief and the change of flight plan, they also share a positive message. I do however wonder how the Dutch might feel about all this!

I’m also very grateful for blogs like Elastamom’s Excerpts, Life’s Unexpected BlessingsLife with Cri du Chat and Fools Rush In. These mums (or ‘moms’, as they are all Americans!) also tell it like it is. They balance Emily’s version of Holland with the regressions back to the airport that are talked about by Dana. Through them I gain support, encouragement and the knowledge that it is ok to feel great some days and not so great other days. What we all have in common is that our girls have Cri Du Chat Syndrome, and we love them INTENSELY!

When Claire was only very new, I was talking to my Mum about “Welcome to Holland”. Callum chose that moment to throw a massive tantrum. Mum commented, “If that’s Italy, I choose Holland!”. How true! We love both of our children so much and wouldn’t change them for the world. While we know challenges lie ahead for both of them, we know that both Callum and Claire are exactly who they were meant to be. And, while we never would have predicted it, this is exactly the family that we were destined to have.

Most days now, I feel confident in saying that I have arrived safely at my destination and I am beginning to understand the new language (not just Makaton and therapy talk, but the emotion-laden discussions that you deal with regularly). I am grateful for the guides we have found along the way. I am sure there will be times that I will want to return to the airport and to catch a connecting flight, but I know that those of you who did make it to Italy will at times feel the same way too.

Picture Perfect Postcards from our journey: 

 

Every girl needs a new pair of shoes…right?

14 Jan

Last Monday, we headed to the Mater to have casts taken of Claire’s legs so that her first pair of orthotics can be made. Not really the cute shoes you were expecting, right? 😀 But, these will help give Claire stability as she begins to practise standing. They will go hand in hand with the Jenx Monkey Standing Frame that we are trialling with our physiotherapist next week. We are just so grateful that this piece of equipment will become a reality for Claire if the trial goes well. Sharing her story has made that possible.

We were all there to help with Claire getting her casts made. We thought that our wiggly worm would make this a very difficult process, but surprisingly, she did quite well. There were two of us holding her still while Callum took pictures and entertained himself quietly. The orthopedist did the hard work of applying the plaster to her tiny little legs and then cutting off the moulds.

As big brother, Callum was given the important job of choosing the colour and pattern for Claire’s new ‘shoes’. There were so many choices!! I was quite impressed that he chose a versatile rainbow print that will go with lots of Claire’s little outfits. I was a bit concerned that pirates or cars and trucks might have been selected 😉

After the hospital visit, we treated the kids to the Disney Live stage show at the Convention Centre. Callum really enjoyed the Aladdin story, and was also pleased with The Little Mermaid and the Toy Story scenes. Claire was most impressed with the iridescent sea creatures and also with the ceiling lights at intermission (and having a taste of a lollipop!)! I think that Matt will encourage me to take the children alone should be go again in future years!

We will be sure to share an image of Claire in her rainbow boots when they are completed and in our hands. We are really looking forward to this next phase of Claire’s development, and are excited that a standing frame is going to give her a whole new perspective on the world, while helping her to develop strength and stability. Look out world…she’s going vertical!

PS. If you haven’t checked out the donated prizes page, it is WELL worth a look! We are getting so excited and are so grateful for the generosity surrounding this event.

Two months of gratefuls

8 Jan

Today marks two months since I started the 365 Grateful project. Happy 14 months to Claire! While I will admit I had a slump at one point, and that I had to catch up a little after a week camping without the internet, I must say that it is nice to have a fairly simple task each day that I can quickly tick off my to-do list!

Some of my gratefuls so far have included being thankful for Callum’s imagination and thoughtfulness, being thankful for Claire’s improved sitting and rolling, being thankful for my clever husband, being thankful for good friends and family, being thankful for The Saltbar and for Wayne Bennett, and being thankful for cocktails! Some days, I get in early and find myself being disappointed later in the day when something even better comes up! A couple of times I have even bumped the first photo out of its spot and added the new idea. How nice is it to realise how truly grateful I am more than once in a day?!

Not only do I enjoy updating my grateful for the day, I also really enjoy reading those of my Mum and Dad, and of Shannon and Trevor on Facebook each day. It is one thing to find your own grateful and be able to articulate that, but it is another to be able to share the experience with loved ones and to be able to share the grateful moments of others too. I truly look forward to reading these updates. They also serve as a good reminder on days when I get a bit side-tracked!

I hope that those who are getting to read my daily grateful updates on Facebook are enjoying the project as much as I am. I hope that you are realising just as I am, just how happy I am with my life and how grateful I am for all it entails.

It may just be my own perception that has changed since I have learnt to be more grateful and positive, but I have noticed that friends and family are much more positive around us now. Maybe sharing how great I believe my life to be has helped people to realise that they don’t need to feel sorry for us. I think having friends and family read this blog has helped with this too. Someone commented the other day that I tend to ‘tell it like it is’. I hope that how ‘it is’ is uplifting and inspiring, rather than frightening and upsetting. I hope that I can teach others to love my little family, to accept varied abilities, and to cherish uniqueness. I hope that I can make others smile through the tears I sometimes evoke!

I highly recommend beginning your own grateful project. I am so grateful that I have taken up this challenge ☺.

Celebrating our marriage

6 Jan

Next week, Matt and I will celebrate our 9th wedding anniversary. I just cannot believe how quickly the years have passed.


Our first five years together as husband and wife were without our children. Life was somewhat simpler, and different stuff seemed to matter.

Until Callum arrived, I was unaware that it was possible for me to fall in love with Matt all over again. Matt was totally enamored with his new son, as was I, but I had never imagined he would be such a natural, wonderful, hands-on father.

With Claire, once again, Matt has fallen totally in love, and is such an optimistic influence in all of our lives. We see past what many would feel to be an ‘imperfection’ in our daughter. What we see is our absolutely perfect little family. This is us – who we were all meant to be.

 

 

I’m not making Matt out to be a saint. In fact, I have LOADS of evidence to the contrary, but he probably wouldn’t appreciate me sharing it on here! I will share though that on our first wedding anniversary, Matt was hungover, and rather unpopular with me for having arrived home past the strike of midnight…technically on our day of celebration. He was still so ill that evening that he was unable to eat anything at the intimate dinner we had booked to mark the occasion. It was a big deal to me at the time, but now just seems silly and makes for a good story!

He made up for this misdemeanor on our 2nd anniversary by booking us an amazing Gondola ride in the Gold Coast waterways with delicious seafood platters and desserts. We then took alternating years to plan something a bit special to celebrate our day – Jupiter’s Casino dinner and show, the Bluefire dinner cruise, and the revolving restaurant at Crown Towers were some of the special evenings we shared. Even when money got a little tighter when Callum had arrived and we were down to one wage, we always made an effort to do something together that was just a little bit more extravagant than our day to day living.

Last year, I think we were a little shell-shocked still from not having long become parents to Claire, and having only recently been given her diagnosis of Cri du Chat. It was also the day after the torrential downpour and tragic flash-flooding in Toowoomba, and my sister’s home was facing the rising waters of the Brisbane River. We didn’t have a babysitter and I was still feeding Claire, but Callum was off to daycare for his first day of the year. For some bizarre reason we headed towards Brisbane with a plan to grab a nice lunch together, but the rain was getting heavier, the radio reports threatened flooding, and we grabbed a few sushi rolls and promptly headed back to collect Callum! It was not a great day for romantic interludes!

Next week however, I think we need to make the effort. We are only just over a year into our journey as Special Needs parents, and while Claire is an ‘easy’ baby in many respects, we know that there are difficulties ahead. We know that it is important for us to make time for each other, and we have also realised that a night off every once in a while doesn’t hurt our kids, and it certainly helps our relationship.

I also feel that this year more than ever we should be celebrating our marriage. We have been challenged in many ways, and all it has seemed to do is to strengthen our friendship and our love for each other. Our marriage is about so much more than just Matt and me. It is about Callum and Claire too. It is about our wonderful family.

But I still think Matt and I should get to celebrate alone! So does anyone have a suggestion as to where we could go?

Our plan for our 10th anniversary (combined with someone’s ‘0’ birthday ;)) was to travel to the United States. We wanted to take our kids to Disneyland and visit my old stomping ground in Indiana, Pennsylvania where I spent a semester abroad at IUP during my university days. While this looks to be out of our reach for next year, we hope that maybe one day in the not too distant future we will get to take that trip, and that we will be able to combine it with attendance at the 5P- Society Annual Conference, where we could meet up with over 100 Cri du Chat families and professionals who are experienced in helping these children to reach their full potential.

For now, I wish to publicly declare my love again for my wonderful husband. Matt, when you proposed to me in the back of your ute ten years ago over take-away food, I am sure I had images of how our life might look. I am also fairly sure I hadn’t thought it would look much like this. I never knew how incredibly happy you would make me as my husband and father to my two beautiful and incredibly amazing children. I love you, Matt. Happy Anniversary. xoxo

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