Tuesday, 23 February 2016

I have never felt so Vulnerable

I have never felt as vulnerable as a disabled parent as I did recently.
If you follow our adventurous you will know that we visited the London Transport Museum recently. It was a great and educational day out for the Boys; I, however, didn’t revel in the enjoyment of it as much as they did.

Seriously, what was I thinking?
By the time we got home that night I sat on the sofa and cried. The impact the day had on me left muscles sore, burning hot and in pain.

To accompany the pain I was in I was also nursing my broken pride whilst also trying to put on a brave face to the world of social media. How wrong were they to congratulate me on being a great Dad and an inspiration for all parents? The sheer comparison to them sitting at home doing the “basic parenting” whilst a disabled Dad was off, by himself, taking his children on an adventure.
As I sat there I didn’t take pride in what I achieved that day; I sat and felt like a fool for trying.

When will I learn?
I logically thought and planned the day ahead.

I have visited London by myself hundreds of times and knew the route and subsequently I knew how to do it. I rationalised that the journey with the Boys wouldn’t make much difference; what would really be that different from a train ride, a small walk in the station and in and out of a taxi?
Obviously I didn’t put any safeguards in place. Hundreds of things could have gone wrong and it didn’t occur to me until I was caught in the middle of the day.

Getting to the station and then on to the train was fine. The boys held hands every step of the way and didn’t blink when the guard placed the ramp onto the train.
On arrival to Charing Cross the boys, once again, were brilliant. They held hands and kept a metre in front of me at all times. They waited at the Taxi rank with me like little prince's; I really couldn’t have been prouder.

Then everything went wrong.
I didn’t realise that the day we chose to go was the same day the London taxi drivers were on strike (for a period of time) in protest of the Uber App. So what should we do?

Well I grabbed my phone, Googled the Museum (which I had done previously) and saw the route; according to my map it was only a 10 minute walk!
Not once, not even for a single second did I think that I have Muscular Dystrophy! We just went off and headed towards the museum.

The problem is that if anyone has ever seen my walking or is aware of how my walking is deteriorating then they would know that what would be a 10 minute walk for any able bodied person would, in reality,  take me a lot longer. When I say it took me a lot longer this is me negating from the truth; it took me 45 minutes to walk between people, to combat pavement that I have never walked before and avoid any obstacles that were in my way.  
The Boys were fantastic, nothing but little diamonds. William walked hand in hand with me and was constantly reassuring me that I was okay, that there was an obstacle ahead and that we’ve been walking a while now so we must be close.  James, well James was good. With the suspected and undiagnosed additional needs he was in his own little world but sticking to the rules of staying pretty close.

We reached the museum. We sat and had our lunch and then proceeded to walk around the museum and see its wonders.
On leaving we had to recreate the journey.

This time we have to take into account that I have walked and walked some more. Not only to the museum but then around it with only a few breaks to sit down. Then I had to walk back.

The journey back was tough. Every single step was strained. I could see the worry on William’s face despite him being my knight in shining armour but he shouldn’t have been in that situation.
We got to the train station in one peace and made it on the train heading home.

The journey got me thinking though:
What if I had fallen over? What if my leg gave way? What would I have done, especially with the Boys with me? Why didn’t I have another adult with me?

The thoughts just went on and on.
I know I am stubborn and proud and I also know that I am fighting the idea that I am getting worse and need a wheelchair but this has definitely been a wakeup call.

This day left me feeling vulnerable as a parent. This day broke any pride in what I do and has just made me feel broken. I know I will still do amazing things with the Boys and they won’t notice I just hate that it had to hit me like this.


Anonymous said...

Hi Martyn. @rubyjezabelred from IG.
I'm so sorry to read about the emotions you're going through but please don't feel alone. I'm a disabled parent with failing mobility to and like you i pour myself into making my boys world magical. I am often housebound with them due to my EDS and i put a huge pressure on myself to go above and beyond, probably to overcomensate that i can't do all the other things lots of able bodied parents take for granted.
I know it's a mixture of emotions when children show compassion towards ill health.Half proud and half sadness.
I also know how it feels tohave a child with their own different abilities as my eldest has seemingly inherited 2 of my gebetic conditions (i have a few syndromes that are all common in EDS) and he's motor skills are effected.
I want you to know that crying is healthy and it's much better to come out. It only makes you human to feel and a brilliant Dad to care. You're doing a smashing job Martyn xx

Plutonium Sox said...

Such a difficult situation and I totally understand why you felt so vulnerable. But now with hindsight and the benefit of time, perhaps you can look at the day and be proud. Be proud of yourself as a dad who made sure that his children had an amazing day out. Be proud of William for looking after you and be proud of James for understanding that it was a difficult situation and he had to behave. Then dig out the wheelchair and run over some taxi drivers for making things unnecessarily difficult. I'll gladly help!

Tracey Abrahams said...

Martyn, I can understand your feelings about what happened that day, the fear, sadness and anger at yourself, but I still think you are being very hard on yourself. You did not suddnely take off on the spare of the moment to take the boys to London. You did your planning. You cant blame yourself for things not going exactly to plan. But because you are a great dad and have bought your boys up to be sensible lads it wasn't a catastrophy.
You will use what you have learnt from that experience to make sure that situation doesnt happen again because thats the type of smart, good dad you are. Your not in anyway a fake or a fraud for accepting our praise for taking the boys out that day. You are a bloody good dad and you will continue to be so in the future. Xx

Kim Carberry said...

You did so well! The kids had a great day and everyone made it home...Try not to be too hard on yourself...I can understand why you feel vulnerable it must be so hard at times. Sending big hugs x

Becster said...

Oh Martyn I'm so sorry that you're going through the this emotional turmoil. But in all honesty, what you did amazes me! I'm not sure I would've tried this on my own even without the added health problems thrown in. You really should take pride in it! And your boys are amazing! :) x

Bear and Cardigan said...

Oh Martyn you are so hard on yourself. You have lovely boys, they are caring and well behaved. It's exhausting walking around London and museums and you did it.
We all have limitations and find our limits in similar ways. It's what we do next time that matters.
Look back at the great bits of the day and look forward to more days out.