My blog uses the analogy of “taking the special”, choosing from the specials board, being different, embracing something out of the ordinary. Since Charlie’s autism diagnosis at 3 years old we have become his coach/mentor/advocate/supporter/therapist/teacher…. anything that gave/gives him that early intervention. We celebrate his differences, I love his quirks and his special mind. I find the autistic mind fascinating and enjoy learning more and more about it.
This has happened over time and is a choice. I choose to be positive, to celebrate, to never let him be defined by just one aspect of what makes him Charlie.
Don’t get me wrong you have your moments. Those lonely moments, where you worry about their future. Will he live independently? Will he be ok? Will he ‘keep up’ with other kids that inevitably will mature faster? Will he be vulnerable? Will he be bullied for his differences? Its hard to admit but you do think all of these things.
This could overwhelm you, make you sad, and make you isolated – and sometimes it does, sometimes you have to let yourself have those moments to then take a breath and be ready to be strong again and choose to take the special.
So why tell you this?
We have received some news recently which back 4 years ago I would’ve dealt with very differently. I would have fallen apart, felt destroyed, would’ve felt – why us?
But having been on the journey we have for the last 4 years with our Charlie bear, has made me approach this news very differently.
Our little legs, Sofia, has been diagnosed with Di George syndrome. This was found when she had genetic tests following her heart surgery.
Di George syndrome (or 22q11 deletion syndrome) is a rare genetic condition that is linked to heart conditions, learning difficulties, possibly autism and other health complications.
We are at the beginning of this journey for her and are just starting to learn what this will mean for her.
I want to tell others about our life, our learns, the highs and the lows – if it helps one other person, I feel I’ve done something to help others in the same position as us.
One thing I do ask…. please don’t be sorry. Don’t feel sympathy or sadness.
My two special kids are teaching me so much, giving me the chance to take the special – taking nothing for granted, appreciating progress however small, living life in the moment, taking chances, exploring opportunities.
All I do ask is to be kind.
Be kind to others who are different to you.
Be kind to others if they are having a tough day.
This little action can make a huge and lasting impact.
Dan and I feel so lucky to be blessed with two special children that amaze us every day with their strength and resilience.
I look forward to everything they can teach us along the way.
Hi Jane I am with you all the way. Your children are special and so are you. You are one phenomenal lady, it is such a pleasure to know you and see the differences you and the rest of your amazing family make every day.
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Just read this and the only thing I can think to say is.. You are amazing, your family is amazing, Charlie and ‘Little Legs’ smiles light up my feed every day: and whilst I am sure life is tough at times how lucky you all are to have one another. Much love Jane. xx
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Thank you Samantha, what a lovely message to receive, thanks so much for taking the time to send this. Xxx