Woke up to an inspiring message in my inbox today!!
Put the hugest smile on my face, needed the reminder!!! As much as we try and stay positive about this new and adventurous journey, some days are still very challenging. Chiara suffers a lot from pain, her jaw locks down on her fingers causing a lot of stress, so we keep a constant close eye at all times. Her body gets stuck in certain positions also, and unfortunately she hasn’t gained the ability to move freely, so that alone frustrates her.
Aside from that, some days it can feel that there is no light at the end of the tunnel with all her unknowns. Will she ever gain physical independence, will she be able to scratch an itch if she needs to, or run away from danger, or talk and communicate her needs. Let alone the big one, which tears at my heart, will Chiara live beyond her limited life expectancy? It’s all big stuff for a Mama and her tribe.
I still can’t leave the house when I’m at home with the girls, as Chiara reacts so severely to the car seat. It’s way too traumatic for her, Grace (who is equally upset) and myself, even a 5 minute drive is beyond stressful, just to get some milk or bread, and in the winter months, when walking with the pram isn’t as easy due the weather, it can feel very isolating here. She’s getting heavier and carrying her weight is different to carrying other children her age, as we also need to support her balance so she doesn’t flip out of our arms.
There are plans on the horizon to move closer to my parents for much needed support, as well as being walking distance to a community, primary school, public transport, special needs facilities, shops etc. Carrying her up and down the steps will only get more tricky as she gets older. Mum will be able to assist with the some of the pick up’s or drop off’s for Grace at primary school, which will be awesome, and far less stressful as the current car travel situation 😉 One day at a time though, we have our hands full at the moment.
I’ll never give up on the miracle, and we’ll keep working hard on therapies. It really does take a village to raise a special needs child, and Chiara’s needs are going to become more apparent as each day goes by. Often I catch myself thinking ahead, trying to plan ahead for a future I have no real idea about?!
All the aforementioned things twirl around in my mind, how will we mange with wheel-chairs, getting out and about in the world, but when I get a message like the following – I am jolted back into the bigger picture!
So thank you sooooooo much to the divine woman who sent this to me, it’s just the divine reminder that we needed!! ??☀
“You hold a very powerful little being in your hands.
She has so many messages for so many people.
What a huge job for such a little person!
She guides you. To help her facilitate her messages to people. To loved ones. To acquaintances. To strangers.
Your blog. Your videos. Your lessons. They speak her spirit. Her messages.
She’s a great teacher.
And you are a fucking amazing woman!!
Thank you, Chiara x x x”