Kicks up the bum from the universe

Ever felt like the universe is constantly giving you little kicks up the bum in the direction you’re supposed to go? It happens to me sometimes. Sometimes it’s playful and other times it really, really hurts.

I notice I get little kicks whenever I think seriously about giving up blogging here. On two occasions now – the most recent being last week – when I’ve been on the verge of giving up this space, I get an email from a parent just like me, coming to terms with having a baby with facial palsy, thanking me for writing about my experiences. The emails are always just so lovely and the tinge of worry, yet glowing love they have for their babies, takes me hurtling back to the time I spent googling for answers with my own special boy feeding away, oblivious to the tears that dropped onto his little head.

In that moment, I know that my almost four years of blogging here is worth it and it inspires me to keep telling my stories of parenting a child with a difference. So, I begin this year with a new resolve to keep telling my stories, the big and the small, the joyous and the painful in the hope that we can all revel in our own differences and that of our children.

This year will be a momentous one here in our household as we prepare J for hopefully beginning big school next year. One of the reasons I haven’t been blogging as regularly is that a lot of my energy has been focused on being completely and utterly present with him and working on his speech, language and physical movement. At the end of last year we went through the process of gaining entry into our local Early Childhood Development Program (ECDP), which prepares kids with special needs for Prep. We had been warned that getting in is sometimes hard for kids with speech/language delay, but when we met with the staff they couldn’t be more accommodating. We started to attend playgroup there while we did all the mountains of paperwork to get in. In the end, they suggested we try to get him in under ‘physical impairment’ due to his facial palsy. Which worked and J started at his ‘new kindy’ this week.

Accessing the ECDP and its services constituted a big kick up the bum from the universe. What I found there was so much support and understanding for Jarvis and for me as his mum. Until this point, the idea that J had ‘special needs’ was something I wasn’t comfortable admitting to even myself. His differences were just him, the challenges we met along the way – the appointments, the tests, the therapy –  was just part of our journey. However, standing in a room with a group of kids, all with different needs, and their parents who were there to help them, I realised that I’d found a place where there was no ‘normal’ and I felt a sense of peace. At that moment, I knew that for four years as I struggled to learn how to be his parent and to show the world how brilliantly I was coping (cough, cough!) that I constantly compared him to other kids his age without his problems, instead of comparing him to his own potential – which although endless, just takes a little longer to shine out of him.

I can’t dwell on the fact that it took me four years to come to this realisation, but I sometimes wonder if I would have cut myself a bit more slack a bit earlier had I known it to be true. The upshot is, I know in my heart of hearts that I never could have loved my boy more if I tried and that I continue to be his advocate and his guide on this sometimes rocky road, despite my personal feelings of inadequacy.

Having said all that, I know that as a family we are up for the challenges this year brings and J is over the moon excited about his ‘new kindy’. And me? I’ll be here, blogging a bit more regularly about our journey thanks to the all the little kicks up the bum that have landed me back here in front of this screen. Where it seems like I belong, after all.

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13 thoughts on “Kicks up the bum from the universe

  1. Pleased to have you back, very inspirational and I am sure your dedicated work with Jarvis will continue to bring ongoing improvements in his life.

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  2. Jarvis is very blessed to have you as his advocate.

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  3. So glad you’re here, and also that you’ve finally found the support you need. I have been meaning to touch base since I saw your post about J starting at ECDP, as we’re just about to have a meeting to start at ECDP playgroup. Funny, I’d just been thinking yesterday that as much as it was difficult to receive Nicholas’ diagnosis, there are bonuses to having such a clearcut tick-the-box diagnosis. You’re so right – no point dwelling on what may have been. What matters is that you’re on the right track – onwards and upwards! So glad J seems happy with his new awesome kindy, and he is lucky to have such a great mum advocating for him xx

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    • Thanks so much, Annie. Nicholas will just love the ECDP playgroup! They have such a lovely support network for parents too. You’re so right about how a clear-cut diagnosis is sometimes a helpful thing. Jarvis’s facial palsy is somehow easier to deal with than his speech and language delay as we are still not sure if it’s just the facial palsy causing it, or if it’s something seperate entirely. But you’re right, regardless of that I think we’re finally on the right track xxx

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  4. Awesome to have you back – B – have missed your blogs and am glad you and Jarvis have found a supportive network. Def need another girls only catch up soon 🙂

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  5. “His differences were just him – the challenges we met along the way.” This, I love. How very true. I’m so glad you’ve found some friendly faces and supporters of your normal. X

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  6. I think the universe put you and that beautiful little boy of yours together for a reason. For him to help you find who you are and to help him find who his way. Your story is inspiring and I can’t wait to hear more xx

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  7. Just saw your blog for the first time. Very inspiring

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