There’s no hiding now

Chiara turns 2 next month (strong Taurean!) it’s going to be a different kind of birthday celebration for us, there will be joy and laughter but equally a slight pang of worry. Mainly that her little body isn’t catching up to her chronological age and what this may mean for the years ahead…

Life is so different with a special needs child, it literally pushes you way out of your comfort zone. I’ve sky-dived without tandem, I’ve ridden motorbike’s down highways, I’ve travelled solo through Greece, Turkey and India for a year, I’ve started my own Yoga business, I’ve done many powerpoint presentations whilst working in National Sales & Marketing in the corporate world (not a fan of public speaking), I’ve scuba-dived to great depths, I’ve given birth – twice, I’ve rock-climbed up crazily steep mountains, I’ve ski’d as fast as I can down mountains and over water… yet nothing quite prepared me for this…

There really is no hiding now, Chiara’s brain injury is more and more evident as soon as we leave home. Simple things like putting your child into the car, is a massive effort for this almost 2 year old who’s experience of a car seat is more like a torture chamber, than a place to chill until the next destination. Travelling with Chiara is just not an option, unless another adult is sitting in the back seat to help reposition her body when it gets all jammed up from the cerebal palsy and to help protect her from any episodes where her jaw may lock down on her hyer-extended fingers…

We may pop into a café for a drink, friendly staff offer highchairs to which we politely say no, as her body cannot hold itself up and those times when we did chance it, she ended up getting so stiff in the high-chair that it took a team of us to pull her body out! We look around to see parents happily enjoying a meal, their children playing, drawing, sitting in a pram of highchair (I’m so used to Chiara not being able to go in any of these common contraptions – that I almost get shocked when I see a relaxed baby in a pram or car-seat, or chewing on their fingers without drawing blood). I’ve almost forgotten was normal is, was, or should be!!

We visited friends for lunch last week, we had a laugh on debrief. Only at the fact of how different life really is for us. Our beautiful friends were able to entertain, enjoy a wine or two and also attend to their little girl who was happily walking around independently and exploring the world around her. Meanwhile, Maur and I took turns in holding Chiara, or sitting next to her to help in case her body started to cause her issues. She’s not the kind of baby that happily chill’s out solo, playing with toys for long periods of time, she finds the floor a place of discomfort and Mauro and I can only assume that she is in pain so we help her as much as possible.

Life rolls on though – we are a strong lot here – on a massive mission! We are human too, and some days are tough, watching Chiara suffer in those moments where her body just doesn’t work breaks our hearts… we float the “why’s” out into the universe and sometimes they get answered, other times there is just a resounding silence.

We had a priest come to visit us for dinner last week (Father Chris who married us), as you can imagine I was asking all the big questions… do miracles exist, why does God bring children to the world with special needs, what should we do etc etc? I didn’t get the answers I was seeking that night, but today as I opened the mail I noticed a card from Father Chris…

“As to the question – what should I do? I have to ask myself the same question: What should I do?? When we look at the death of Jesus on the cross, we see a combination of human endeavour and divine help. From a human viewpoint – He did a much as was humanly possible. Then he safely and confidently left everything to God. Do your human best, and leave the rest to God”….

How beautifully poignant..

Bless! Onwards and upwards (& a little bit sideways) x


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  • Oneinamillion March 11, 2015   Reply →

    I love that quote.

    It’s no joke this special needs parenting gig. Thinking of you.

  • Lee March 11, 2015   Reply →

    Honey you know how I feel you are amazing and so are your family ?????????????

  • janetvague March 12, 2015   Reply →

    You are all Amazing and continue to inspire those of us who have no idea what effort and energy go into each of your days. Know we think of you often, keep you in our prayers and wish for the continuing smiles on all your faces. xxxxxxxxx 🙂 🙂 🙂 🙂

  • Love what your priest said! I completely agree. I came over to your site from a special needs blog. I too, have special needs daughter who is turning 10 in a few days.

    I used to ask those questions all the time until I realized why God sent her my way. It really all makes sense now. This doesn’t mean I don’t have rough days, but it really makes sense.

    I’m glad to connect. Will be following your journey.

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