This week we have started the process of pre-surgery testing. It is overwhelming, mind blowing and scary. Despite the fact we have been gearing ourselves up for this, doesn’t make it any easier!
I was taken a bit off guard when my heart broke a little bit the other day as I watched my eldest neuro typical child break down after a running race at school. Not just any old running race, but the race she has been gearing herself up for since last year. Because now she is at the ripe old age of 10! she is able to compete in Districts for running, if she placed in the top 3 (no pressure!).
MrD’s eldest sister has done a few fun runs to raise awareness and funds for the CPL. She has loved doing them and is competitive by nature, just like her dad.
Unfortunately, today something went wrong. She ran off the course by mistake, and had to be geared back on track and subsequently, did not make the top 3. She was heartbroken as she had set her sights high.
The irony of her running for her brother in the past couple of years, hasn’t been lost on us. A lot of siblings do tend to push themselves to want to be ‘perfect’ to compensate for what they see that their sibling with a disability is unable to do for themselves. Physical sports is one of them. I have read a lot about this over the years.
Both of us were there and we saw the disappointment and we felt her emotional pain and frustration. The thing is, and I am sad to say this, it never entered my mind that this would happen. Because she is so strong willed, capable and driven, I didn’t think anything would go wrong. But it did, and I was heartbroken for her.
It made me realise, that despite what we do as a family together and what we’ve been through and will continue to go through, there are times when we go off track – and which we can’t stop from happening. It was one of those times, that from the mistakes, we have to learn a hard lesson from and move on.
With MrD’s experiences, we can explain them to a point to our girls, as there is some rhyme and reason to why things are difficult for him and challenging. He teaches me as a mum, more often than what I teach him, that’s for sure.
Now watching Jaz’ run was a totally different experience again. My eyes filled with happy tears, we saw Jaz in a group at the back of the runners. Jaz was beaming and proud as punch to be running. Mikey was thrilled for her and loved seeing all the kids. He sat in his chair, waving his bag of popcorn as Jaz ran past us, holding hands with a girl older than her, guiding her along the course.
After the race, Jaz was full of the thrills of it all – telling us how fast she had run and that it was so much fun. It didn’t occur to her that because she was at the back of the race, it wasn’t as special. Jaz was genuinely happy to have been apart of it.
The thing is, I personally don’t think life is meant to be on track. But it’s hard to tell a 10 year old that, when it’s taken my 40 years to figure that one out! We are almost always told, we have to have some kind of plan, knowledge of where we are going. A clear cut path.
Try telling a bunch of adults that it’s ok to go off track and listen to the pin drop! Some of the best things in life happen when we go off track and that is when our lessons come to us. Apparently, the pressure on our kids (NT kids) to have clear cut ideas on where they are going, and where they are headed to from after school – are pretty real. To not have a clear idea, is apparently, not ok (??!!)
I don’t really know how the next few months are going to pan out for us, it is going to be hard work and many times we are going to find ourselves going off track, and having to readjust our priorities. But that is what we must do for now.
And you know what, that is ok! A lot of people are no longer ticking boxes and conforming to outdated ideas that no longer suit their situation. Disability and the life that goes with it, from what we are experiencing, certainly doesn’t have a clear cut road. It is fraught with many challenges and it constantly challenges US to think of new ways to do things – let alone MrD who lives with it!
Of course, our little big girl learnt another life lesson and bounced back excellently. I think her ability in her resilience is being tested all the time. And that is one life skill that is earned, not taught.