It seems like forever since I have made the time to sit down with my obligatory glass of red to type some thoughts to share with the world. Perhaps you have missed me…I’ve missed blogging.
Life around here seems to have stepped up a notch to even more chaotic than ever. Life is wonderful, but I never feel like I have even close to enough minutes, hours, days, weeks…to get through all I WANT to do. I very clearly say want rather than need, as I am again becoming aware of how important it is to prioritise, and of how bad I am at doing it at times.
For those who have met me and joined our community since Claire’s arrival, I know that I seem somewhat insane at times. I see the looks I get from those who know the warning signs of a breakdown, and I see them bite their lips when I explain my schedule for the day, my plans for that week, my ideas for the future.
I have never in my life felt as invigorated as I do now that Claire is a part of it. I can’t really explain it, and I have at times wondered if it is me on the brink of a breakdown. I definitely feel things more intensely that I ever did before, and I have been exposed to a new world that I feel I have a lot to offer. My only regret is that I don’t have the time I need to bring all that I hope to do to fruition to the high standard I set for myself.
For those who have known me since the BC Era (Before Claire 🙂 ), and for those who have met other members of my family, it would take a lot more warning signs to convince you that I am anywhere near breaking point! My way of coping with any challenge or obstacle in life has always been the same. Is that a speed bump up ahead? A mountain to climb? Well, put the pedal to the metal and fly! Don’t stop! Don’t even slow down! I’m thinking this may be a trait I gleaned from both of my parents, and my siblings seem to take the same approach.
The difference for me now, is that while I see all of these amazing and inspiring opportunities to induce change and to create a better future for Claire and her friends, and for others in need, I have to brake. There are many roads to travel on this journey, and I just can’t be in two places at once. I have to choose carefully which paths are right for me, for Claire, for our family, right now. Caring for Claire and providing her with best practice early intervention, as well as caring for Callum, and for Matt, and for ME, have to be given top priority. I want our little Bear to be the most amazing person that she can be, and so many people have invested in us, giving us the opportunity to make that possible.
At the same time, I feel an enormous need and desire to help others to know the experience and benefits of a community of support. I want to strengthen our communities too, and I have taken on two major projects to help this happen.
The first is a Family Weekend and Conference for the Cri Du Chat Support Group of Australia. Following on from the success of the family days we held here, and the responses to the updated website and Facebook pages, we decided we should attempt something a little more spectacular. When we first got Claire’s diagnosis and read about the conferences in the US and family weekends in the UK that are held each year, we seriously discussed a trip within the first two years (before we would have to pay for Claire’s flights). We soon realised that that expense might be out of our reach, but also that it would be much more economical to just bring the conference to us. Again, those who know me will be grinning that, “I told you so” smile.
I am really excited by the enthusiasm with which families have approached the idea of a get together in Australia, and really hope we reach the goal of 30 registered families. We already have two families coming from as far as New Zealand, and almost every state is represented.
As full on as the planning phases have been at times, and as much of a learning curve as planning an event of this size has also been, I can honestly say that the whole process is bringing me so much joy. I am so happy to have been able to connect with so many other families who are facing similar challenges to us. I am so excited at the prospect of a whole weekend to learn together, celebrate our kids, and just be in each other’s company! Quietly, I am also SO excited that some very dear friends and family have jumped in to help ease the load in the planning and preparation phases! THANK YOU!!
Information about the weekend is available on the group webpage, and hopefully I will get back to share a little more about it in another post soon.
A second project I have been working on has been coined “The GIG Project” (for Get It Going) by a new friend and therapist of Claire. The motives behind this project are quite selfish, but also very sensible. The biggest challenge I face at the moment in keeping up with Claire’s therapies and appointments is the travel each week and the coordination of activities. Again, I want it all: quality, quantity, convenience, inclusion, specialised services, and to be a part of our local community. I feel that as we travel between Palm Beach and Brisbane to access quality services, we are removing ourselves from our community, which is a community of which I really would like us all to be a part.
The minute we saw the new community centre being erected in our suburb, complete with a library, pool, playgrounds and parklands, and meeting rooms and halls, our minds started ticking over with how we could make this a hub of activity for Claire and our family. Imagine how much easier life could be if we could have a one-stop-shop for many of our needs and activities.
You could describe me as a talker or a big mouth, or you could choose to embrace this ‘gift’ as I have and give it a more positive spin. I can’t quite find the words to describe it, but I felt the success of it when I sat with twelve service providers in one place last month to discuss realistic possibilities of connecting services in our local area. They were there because I opened my big mouth J.
Again, I will attempt a post dedicated to GIG in the near future, but right now I am feeling guilty that the minutes from the meeting have not been circulated and the date for the follow on has not been set. I obviously need to delegate a little better in this regard too, as while I have the ball rolling and know there is amazing potential, I don’t imagine I have time for leadership of this until after our March weekend. Any support with this project would also be very welcomed! I am so thankful for the conversations that have been started and I hope that there is someone who can help to keep them flowing.
Before children, I remember waking up on the weekend after a sleep in and looking forward to an afternoon nap. Now, I go to bed reluctantly each night thinking that there is so much I WANT to do, and some things that really need to be done.
I want to blog more. It makes me feel good as I feel like I get the opportunity to connect with people that of late I haven’t had the opportunity to even converse with. I want to find the time to share our Bear and thank everyone who has made an effort to be a part of her life.
I want the weekend in March to be AMAZING! I have never been one to settle for mediocre, and I know already that it is going to be so worthwhile for so many families, but I want it to be accessible to as many as possible and I want it to be worthwhile. I want those who travel great distances to be glad that they did. I want to create a buzz that sees the event replicated in future years
I want to enjoy my family. I want to have more time to spend together, just hanging out and enjoying the unique little unit that we are. I want to ensure that what we give to each other above all else is love and joy.
I want to DECLUTTER my life. My physical environment, my virtual environment, my mind! I need more fridge-cleaning friends and a visit from a sister who has no sentimental attachment to my belongings. I need to be able to verbalise an idea and have someone else take on the challenge of making it a reality….any takers?
I want more time with my husband, more cuddles with my kids, more visits with my family, and more days with my friends.
While Callum tries to race through life, celebrating his ‘fake 9th birthday’ a couple of weeks ago (he will be 5 in January), I am desperately trying to s l o w t i m e d o w n….
I want more time. But as that’s not going to happen, maybe I should make more time. Prioritise…
For now, I will leave you with the reminder that Claire Bear is amazing. Still attempting to crawl but with no luck as yet. Making lots of different noises and…drumroll please… twinkling her fingers for Twinkle Twinkle, Little Star, making a diamond shape and singing the word “are!!!!!”. Love that kid. xox