With, and without.


Those ‘with’.  Those ‘without’. 

Sometimes I think we’re ‘without’ – half empty if you want to put it that way.  A life that 3 years ago got turned upside down and hasn’t yet landed on it’s feet, a crap hand of cards dealt in a cruel way with a little boy as the loser and the other people around him seeking to pick up the pieces.  Three years of bouncing from one appointment, one bit of devastating news, to the next bit of devastating news without so much chance as to draw breath after the previous one.  A future that still has more questions than answers, and that can’t be planned or even sometimes faced.  A family that looks from the outside like it has enough, but from the inside feels isolated and different. A boy who has no idea what life with a voice, being able to walk, being able to live without 24 hour care has ever been like and probably never will despite the hopes and dreams of his parents. Friends that say ‘it must be hard’ and who you say ‘we’re fine’ to when you’re not.  People who say ‘I know what it’s like for you’ when frankly they have no more idea of how it feels than I have of what it is like to not have our life.  The anger, the frustration, the ‘why us’ feelings that come and go sometimes. The feeling that you’re a crap dad because if you were any good then people around you would be happier. The guilty ‘look at them, it’s ok for them’ feelings you get when seeing other people do what you would want to do.  Gloomy thoughts is how therapists put it – because it’s easier to pathologise the negative ones isn’t it than accept that anyone put through this particular wringer would come out with a set of thoughts that reflect that the world is a hostile and (pardon my french) shit place. The ‘this isn’t how it’s supposed to be’ thoughts and the chaser that comes with it ‘but it f*cking well is so get on with it’.  The feeling that you’ve been cheated of a ‘normal life’ then feeling guilty for thinking that because one little perfect boy has got things immeasurably worse.  The times when a social event feels like the last thing you want because no other person there has got the cloud of stress hanging over them that you have.  The knowledge that the likelihood of the little boys brother’s growing up without any negative impact of having a brother with disabilities are remote nomatter what you do as parents. The bad times.

Then there’s days where I think we’re ‘with’ – full up of optimism.  The smiles from the three kids, the giggles caused by a tickle or a moment where you can see the bond you’ve created.  The times where you realise that it’s not all for nothing and that the future is there to be made and melded to how you want it to be both as a family and individually.  The time that you realise that you’ve helped someone understand or learn something that you know will influence how they think about children and families with disabilities in future and how they do their job.  The times you realise that you’re not locked on a sat-nav that is progressing towards a full on breakdown.  The times you meet great people, who see past the veneer and know what it’s like.  The people who know that you may not be able to do the same as them, that you may not be able to  reciprocate their invites to their house / party / them taking one of your kids somewhere with their kid but are inclusive and supportive.  The people who step forward to support what you believe in. The people who bring you a brew when you get into work having had 2 hours sleep but don’t ask questions because they know you really DONT want to talk about it.  The times when things go right.

The thing is, my head is always a set of scales between ‘with’ and ‘without’.  For 3 years the without was pushed, crammed into a small room with a tight but bulging door – to open it a crack would have been to open pandora’s box, and what if, what if you can’t get the door shut again? If that happened then surely you’d go under.  So each piece of bad news, each vivid and visceral trauma (and my god there’s been some bad one’s, from seeing your perfect boy resuscitated twice in intensive care through to Doctor’s saying he will never walk), each nightmare gets crammed quickly as possible into the room.  Quicker the better, same day delivery.  Get it in there and shut the door and go and do something to distract you, play the xbox, watch TV, ANYTHING other than look at it before it does in the room.  

3 years is long enough to fill the room though, and stuff starts coming under the door and through the keyhole.  But as this crap comes out you either push it back in under the door or it starts to pollute the healthy ‘with’ part of the head and chip away at it.  This went on for 3 or 4 months, the sense of foreboding, of thinking things were out of control and having more ‘without’ days than ‘with’s.  Eventually, and this is the saving grace, you realise that you need to give yourself a kick up the arse before things go severely wrong.  So, arse kicked I have started to accept support.  Hopefully it will either open the bulging door in a way that means I can shut it again, or it will reinforce, concrete up and send to the bottom of the sea that room so it never rises (but i’ve seen Transformers and I know that does’nt really work!).  In the meantime, the people who help the ‘with’s’ will get me through, and one thing that is central is that I know that by doing what I do with my free time with the charity (like that’s a lot of time!) is making a difference to my perfect little boy’s future and other children like him.  Hardest blog ever, dont know whether to hit ‘post’ but well, I’ve sat here long enough writing it so I suppose I owe it to myself to see a product for my time…

5 thoughts on “With, and without.

  1. I’m going to share this Rick , specifically with my friend Marianne who has a son who I think is about 30 now. he has signiicant additional needs- his twin has none. Maz is and always has been, his main carer ( she’ also a single mum) i know she would completely identify with what you say – she really is someone who would understand and empathise completely . I think you have done exactly the right thing in hitting the “post” button – too many people are araid of sharing their hurt with others in the fear that somehow that isnt the “done thing” why shouldnt you be angry, helpless, feel guilty and all those other raw emotions? Equally why shouldnt you celebrate the times when life is good ! Well done , much love to you all xxx

  2. Thank you for sharing. We have a similar story and can definitely relate to the with’s/without’s. This journey is not an easy one, it’s certainly not fair and to put it mildly it just plain sucks. Saying that though I love my little man so much, he’s a fighter and amazes me daily.

  3. You can read so many contrived and cliched verses, quotes and poems trying to convey how life is when your child’s mortality is ever present in your daily life but this post (which i just stumbled across on twitter) is the most honest and elequent I’ve ever read. All the very best to you all!

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