The Gift of Stella

The hardest part of this journey by far has been having our eyes opened wide to the fact that life is not always fair. There is nothing fair about illness that debilitates a child, or that takes their life.

Three years ago today, a gorgeous girl was taken way too soon from her beautiful family. Stella had suffered for almost a year from hideous seizures as a result of Mitochondrial Disease that presented shortly after her first birthday. Claire and I were lucky enough to cross paths with Stella’s journey through therapy the girls attended together. Once I met Stella’s mum, Chelsea, it was impossible not to become her friend.

Chelsea is a model of strength, composure and determination to me. She epitomised what I see as an incredible example of being a mother, and continues to do so with her two gorgeous boys and the precious bump on its way.

I have learnt so much about everyone’s problems being relative to their own situation. I have learnt how we all use the experiences of others to help us to feel more at peace with our own journeys. It’s natural to compare your existence with that of those around you. Chelsea once told me how much easier her journey has been than mine, because there was an end to the care-giving phase. I was astounded that that was her observation, as I could not have disagreed more. How blessed I felt to have our precious Claire with us, and how much my heart ached for Chelsea when she had to say goodbye. It still aches for her each time I think of Stella. I imagine her comments were more about finding justifications that would help her to move forward.

Beautiful Stella has had such an impact on my life. I couldn’t help but watch the grief unfold without feeling that it could have been us. Despite the false suggestions that Claire would likely not survive beyond four, until I followed the journey with my own eyes, I was unable to process the way that journey would play out. Stella’s story helped me to be at peace with the diagnosis of Cri du Chat Syndrome, and to become so very grateful for what this diagnosis would not mean for our family.

Stella has been such a gift to my life. Today I’ll do something special to remember this sweet girl. I’ll hold my kids just a little tighter. I’ll share the story of this precious family. I will send kisses and hugs to the stars.

Twinkle twinkle, Stella Grace,
We know you’re in a special place.
You’re missed each day by friends who know,
How hard it was for you to go.

XOXO

Editing is Exhausting

People often tell me how amazing I am, and how well I ‘handle’ all of the responsibilities that come with being mum to Claire. They ask how on earth I find the time to advocate for her needs, but the truth is that I just don’t see it as a choice.

I don’t want ‘being a special needs mum’ to define me, anymore than I want ‘having Cri du Chat Syndrome’ to define Claire. It certainly is a part of who I am, but I have so much more to be and give.

When people comment about how well I take it ‘all in my stride’, I smile politely as I realise they haven’t popped in to our house unexpectedly, to find the chaos that ensues. Housework around here comes second (or third, fourth, fifth…). I feel so lazy and berate the boys for being so as well, but there really is so little time left each day to attend to thorough cleaning!

When people tell me how amazing Callum is with his sister (mostly in response to photos shared via Facebook), I agree wholeheartedly, but am reminded that they are definitely only seeing the highlights of this relationship!

When people comment on how far that Claire has come, I am always proud and encouraged. She truly has made great progress. I record her standing near a wall, and cut the clip the second before she spills awkwardly to the floor. We celebrate each tiny achievement and work to extend the duration of her efforts more and more each time.

Sometimes I look in the mirror and am met with a frightful image of myself. I wear bags underneath my eyes and my hair might be greasy and unkempt. These are not images I photograph to update my Facebook profile :). I save those updates for the days when I manage to find time to shower, apply makeup and get out of my PJs before lunch!

I have become a master at editing. I share our highlights and hide the moments where things don’t go quite as planned, and believe me, there are many. The meltdowns, the sleepless nights and the ‘toileting’ debacles that are too hideous to share with untrained eyes and ears, are saved for the out-takes roll, usually shared only with those I know will truly understand and not judge! Those who won’t relate these experiences to the person Claire is as a whole.

In my first year as a mum, I was very grateful to share the experience with a number of other friends who were novices too. The support was incredible. This time around, the friends who had newborns when Claire was new were almost immediately tracing a different path to mine. This was just the reality of the developmental delays we faced. It’s been bittersweet to watch her peers grow and achieve milestones so much faster than Claire.

I can’t edit everything, and sometimes I need to seek support. There are parts of the journey that we can’t manage alone, and that’s when we will share a little more depth of our story. Thanks for trying to help us navigate these obstacles.

How to help get Claire to Kindy

People are contacting us asking how to help, and we are very grateful!

The short answer:

1. Share, share, share our posts and links on Social Media (and ask your friends to do the same). This truly has a genuine impact on any campaign. We have already been contacted by the Kindy Counts office regarding our posts to their wall and the interest and discussion that was being generated :). Thanks!!
2. Write an email or a letter. We need to draw attention to the bigger issue, beyond just getting Claire to kindy. Kindy Counts for ALL Queensland children, and we want to remove this obstacle from the path of families who follow a similar journey in the future. ASAP! There are tips on what to include below.
3. Make a financial contribution to the Everyday Hero ‘Help Get Claire to Kindy’ Campaign (Supported by Variety, the Children’s Charity). We are almost a quarter way to the goal, meaning that term 1 is good to go! We are sooooo excited that Claire will have the support she needs. If you know of a business who may also be willing to contribute, please share so that we might meet our goal even sooner.

The longer answer:

Just two days ago, a kind couple from Brisbane established a fundraising page to specifically raise funds through Variety the Children’s Charity to pay the shortfall required to allow Claire to have full access to her 2015 Kindergarten program with a full-time assistant. The cost for the assistant for the year has been estimated at $13662. The support provided by the Queensland Government is $6000. This leaves a shortfall of $7662. To ensure that the everyday hero charges are catered for, and to cover any additional equipment or resources that may not be available for the kindy to hire through Noah’s Ark, the goal has been set for $8500. The funds raised will be transferred directly to the kindergarten for use to support the cost of Claire’s inclusion support aide.

In less than 48 hours, the power of social media has assisted fundraising efforts to be almost enough to cover the entire shortfall for term 1! We are blown way by the financial contributions, and just as importantly, the efforts of our family, friends and community followers to share the link to the Everyday Hero page.

Our dream will be realised and Claire will be able to attend kindy full-time, increasing her opportunity for inclusion, thanks to the generosity of so many people who see the benefits of this for Claire and her wider community.

Our goal beyond Claire’s inclusion, is to change the way that inclusion support is funded for kindergarten programs in Queensland Kindergartens and Long Day Care Centres. The Queensland Government is so right in saying that Kindy Counts. Even more so, for children where a mainstream education could prove to be more difficult as they grow and the gap between them and their peers widens, opportunities for full inclusion at this level should be easy to access.

Petitioning State Parliament

As a family, we will soon meet with our state Member of Parliament, Mr John McVeigh, to request his support in petitioning the Queensland Parliament for change in current practices. Our meeting scheduled last week had to be postponed due to Callum needing unexpected surgery after an accident on his motorbike (he’s on the mend now!). We need the support of others to make this change so that all children can have a suitable level of assistance for their attendance at kindergarten, and that the process is equitable no matter what region of Queensland you live in, whether you attend a program in a branch or affiliate C & K service, or any other approved kindergarten program. We are not the only family facing this challenge.

We would like to encourage families in a similar position, families with children who access kindergarten or will in the future, aunts, uncles, grandparents and friends of anyone who will wish to access a Queensland kindergarten, and anyone else who supports the idea that a more equitable process is required, to write to your state member and also to the ministers listed below. This issue affects all kindy kids and families. The lack of funding is having a direct effect on the resourcing for children without a disability too, when centres are having to use  fundraising dollars and fees to cover shortfalls. Claire and other children with a disability will be using the paints, papers, sun sails, puzzles, etc too!

For those who have asked for the factual information required to include in these letters and emails, here are the key points for our personal situation, and some background information that may be of use.

• In 2015, we want Claire to attend the full kindergarten program (5 days a fortnight) at a local C & K Community Kindergarten (affiliate).
• The program is 32 hours per fortnight, and available funding supports only 14 hours per fortnight of aide time.
• The cost of the aide to be in attendance with Claire for the full program is estimated by the kindy to be $13662 for the year.
• The Queensland Government provides a MAXIMUM of $6000 towards this amount.
• Children with a Health Care Card (most children with a disability) also receive the Kindy Plus Subsidy, which reduces the daily fee cost to our family significantly (I think it costs about $5 per day for Claire to attend and about $30 per day without a HCC). – The irony in this is that they are almost fully subsidising a program that without a full-time aide, Claire is unable to attend. Ouch!
• Currently, any shortfall in funds available to support inclusion need to be met by the centre or organisation managing the kindergarten. This is problematic if centres consistently have children attending who require high levels of support. It is difficult for a kindy to exclude a child, as this of course would be discrimination, but a more systemic approach to funding is required to support kindergartens and day care centres.
• We recommend that the process be modified to support the full inclusion of all Queensland Children who wish to attend kindergarten.
• Disability is extremely varied, and not all children would require full support, however this needs to be looked at on a case by case basis.
• The benefits of attending Kindy will be enormous for Claire. We expect that she will have a significant increase in her communication skills, with constant exposure to peer language and activity. We expect her to be more motivated to participate and interact with others. We expect her motivation to walk to be further increased.
• For her peers and their families, and her teachers, having Claire in their lives and a part of their community is so important in encouraging inclusion, acceptance and respect for people living with a disability and for diversity. We know that so much can be gained and learnt from spending time with this amazing girl.

Please address your letters of support to:

• Minister for Education, Training and Employment – John-Paul Langbroek MP (education@ministerial.qld.gov.au)
• Minister for Communities, Child Safety and Disability Services – Tracy Davis MP (ccsds@ministerial.qld.gov.au).

Thank you again for your continued support!

We would not change Claire for the world,
but we will change the world for her!