Steps …

There has been a lot going on in my paid work/voluntary work/motherhood/wife/duchenne mum life over the past couple of months. It is not that I haven’t wanted to blog about how I feel; but that I just haven’t had the time….and that is something I need to re-address; me time, my fitness and my health.

Our house developments are getting there, but when your architect goes awol and hasn’t finished half the work set for him it puts a delay on the whole thing & added stress we just don’t need! I have visited a couple of kitchen show rooms but my energy has been put into finding the right through floor lift, hoist systems & appliances for the wet-room and getting the necessary quotes. Not quite the ‘dream build’ I had in mind. Fingers crossed this really develops early in the new year, my back and shoulders are feeling the strain of carrying my boy up stairs now.

William attended Addenbrookes again yesterday (Wednesday) for his big 6 monthly check up with the neuromuscular team. It is a long day for me and daddy but when you think of him as a 5 year old and ALL the tests he has to go through, well, I don’t know how he does it. And still has a smile on his face.

I find it emotionally draining with all appointments – but this one is the ‘test’. Has he improved or got worse over the past 6 months? It is apprehensive as you await his results, watch him be scored for his abilities and then grasp what is really going on. Is his spine ok? Is his bone density ok? Is his heart ok? Are his lungs ok?

I was never really into biology at school, but I have been forced to understand the whole body and how it works and how duchenne then wrecks it. I ask the consultant questions on what the bone density numbers actually mean! I ask about heart prevention drugs. Is his dosage for steroids ok? I ask about clinical trials out there for William.

What on earth has my life become?

He did so well. He has improved in some areas, but what I can’t stop thinking about is that his little legs seem to have got worse in strength for stairs. It scared me watching him struggle in the step test, unable to get up one step on his own. It was heart wrenching.

To then watch him do the 6 minute walk test – walking up and down 25 metres between cones for 6 minutes non-stop as fast as you can – is just heart wrenching again. His little face, his body visibly getting more and more tired. My soul trying to fight back the tears as daddy high 5’s him each time he passes us.

We post the positives on his page to highlight just how amazing he is, and I think to keep ourselves positive. It’s only the next day when someone asks you how it went (his teachers) that the enormity hits me. I look at him happily going into class and my heart breaks. His friend said he missed him. He is such an inspirational child, well human being really. But I find it so emotional I cannot hold back my tears. Why him, why me, why us?

People call me strong and inspirational.

I am not.

Believe me, I am a mum who has ‘come to terms’ with her son’s diagnosis on the surface.

But I will never really be ok.

Another stage to get through, another cry and carry on being mummy.

#keepthatsmileonhisface

2 thoughts on “Steps …

  1. Sounds a bit overboard but my heart aches for you, for William and all your family! I cannot imagine your daily struggle to cope with the knowledge you hold – You may not feel strong but believe me you are! Xxx

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