I know, I know…. anger is not the best emotion to admit you have an abundance of,  and if best, you channel it in other ways, but sometimes you need a good rant and to let off steam.  Because if you don’t, then what?

Some days I don’t know what tips me off… it could be an old stupid comment that pops into my head and stirs me up.

But I know what it was the other day.  I met someone.  I met someone new.  Just a wee little thing that was going through something very similar to what Danger did, at the same age.  It stirred up the emotions – and in particular – my anger.  The mother was grieving for the life she knew wasn’t to be for her child but she had not quite reached the stage of starting to see the life that was before her and her little one.

I felt angry for her and for the unfair card they, as a family, had been dealt with.  A lifetime of fighting and advocacy and worrying about the ‘what if’s’ for her child.

Yes it would be hard, I said.  I won’t lie.  And you will ask yourself ‘why’ so many times.  But then one day, you will feel different.  It may take a long time, maybe even years – it’s taken me a few years!

The grief that you feel will come and go in waves, you will learn to live with and acknowledge it (I have learnt this the hard way, as mentioned in my previous post of not wanting to ask for help, or fess up to what I was feeling).  I find my grief hits me most unexpectedly.  Not what you may think – I love seeing other children do incredible things – I have many friends and family that share what their kids are doing and it’s great to see the development of all these kids that have a place in our hearts, whether they live near us, or live far away.

Danger has a very neuro-typical older sister who is very much the Tweenie (when her friends are nearby, anyway!).  A twin sister who rules the roost and although challenged with her delays due to heart surgery, nothing that time won’t heal.

And I guess that is what it is.  It’s TIME.  I know deep down that TIME for Mikey may not mean an increase in certain skills or abilities.  Because for Mikey, it’s not about TIME it’s about something more.  It’s about a different way of living, and that is what we adjust to on a weekly, monthly and sometimes even daily basis. Groundhog day with kids with acquired brain injury, chronic childhood epilepsy is a different ball game.

Sure, we know that over time, things will change in the way he will learn in his own way with how to adapt to certain situations, but the very likelyhood of having the cognitive reasoning of a young child, that will remain over the years, is potentially, at this stage, very much a reality.

It is something I am learning to adjust to.  The meltdowns on the zebra crossings wear me down at times, especially on my hard days, but then the next day, may run more beautifully than a ballet!  You just don’t know what the day will bring.

And I guess that is all any of us can do, on  a daily basis – go with the flow on the day.  So if you feel your anger, let it sit with you – vent, get it out of your system the best way for you – if it’s dropping the F Bomb, then so be it.  If you can go for a run, while pushing the special needs stroller, than do it.  I prefer to walk to the cafe, grab the biggest chocolate cake, eat it at the park, then go home again!

I guess as time goes on, I may feel differently.  But as I meet people along the way and they are new to this world, I feel an array of emotions, and anger just happens to be one of them.  The partner to anger, I guess is pure joy. The pure joy of these incredible little people who fight, and navigate the world on their terms, and teach us about love, patience and acceptance.

If it means that to experience this incredible joy, I may have not known otherwise, I have to allow my anger in at times, then so be it.  

Let my anger run free to allow my joy to return again soon!

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