I haven’t written here for a while. Sometimes I think maybe I only write when something significant has happened, good or bad, but maybe it would be prudent to sometimes just write about daily mundane stuff. Maybe it would take my mind off the difficult decisions I have had to make recently. Not that my mundane trivial stuff would be at all interesting for anyone else – who else wants to know what colour washing I sorted today or whether I caught up with my tail enough to get the Twins’ school trip consent signed. Bore off Haanagh, no one wants to read that.

I’ve often wondered who would read this blog at all, but my dear friend suggests to me that someone, somewhere in the world is experiencing similar things with their children that I have – and therefore these ramblings may just accompany them on that path, reassuring them that they aren’t alone in that travel. Maybe it goes someway to opening others’ eyes to the life that someone with disabled children leads. Maybe it educates. Maybe it accompanies someone’s coffee as a convenient read when there’s no recent edition of ‘Women’s Own’ handy. Maybe it just explains why sometimes I haven’t got my lippy on for the school run.

For me, it’s an outlay. It’s therapy in its cheapest form. The written word can let me say what sometimes the verbal word cannot. Times when I burst with pride and there aren’t enough superlatives to describe the joy I have for the twin’s most recent achievement. Sometimes it’s a way of pouring out the sheer gut aching wrench that I have, when delivered a new challenge to face, when no words seem enough.

So, whether people read or not, I know that come the end of my own verbal reasonings, I shall feel better. Therefore it seems worth doing.

I’m writing this one from the bath. When my husband reads that, I can foresee the shudders he will display knowing I could have dropped my iPhone in said bath water. (Note: if I do, I’m sorry…but I promise I will try my best not to). Writing that, I can see the flaw in this plan – that with one water damaged accident my blog here will be over in one fell swoop and my husband will have a near on coronary that I lived on the edge in this way.

But I shall continue…continue writing as taking risks seems to be something I never do, yet do every day all at once right now.

The days of my taking risks for exciting or beneficial reasons are long gone. I don’t take the risk I’ll be too cold if I don’t wear a coat to a nightclub saturday night. I don’t risk taking a chance on a new job. I don’t risk throwing caution to the wind and making some reckless decision that would possibly be irrational, yet give some spark to my life. Disability took all that from me. No wild nights out or careers for me any longer.

My risks are daily now, but for far different reasons. Risks like:  we shall try that new advised medication in the hope it improves his muscle tone. Risks like: shall we pay out that £600 for an independent opinion, wondering if it will give us a different perspective and hope. Risks like: which school in the future will be best for him…  And I can guarantee in all those risks, there’s no wages or career progression and certainly no prosecco standing at a nightclub bar! But certainly there will be a cold virus in it for you, having picked up some new germ at their most recent hospital appointment.

I probably should get out the bath. I should move my iPhone away from the ever slippery hand from the water. But I’m not sure if the water is that from the taps, or from that that is streaming down my face.

You see, if you read my blogs or have been used to my online ramblings you will know I always fall of the side of positivity. If you know me personally, you will know my outlook is a rosy one; that through the challenges, we face a life based on what we can do and not what we can’t. To see a way around the difficulties. Not live in the ‘why me’ or ‘what if’s’. They are far too consuming. As a general rule, that is me all over. Be grateful for the small things and carry on regardless.

However, we all have that devil on our shoulder. A little voice that casts doubt on the reason you do what you do, and doubt that are you bloody getting this right at all? That devil rears his ugly head at times and instead of letting you face the world in your red lippy and heels with a smile on your face, you face the world with red lippy, heels, a smile…on a backdrop of heartache that no one else sees.

No one sees the times I come home from school and shut the door on a world to have a bloody good cry. Even my closest friends aren’t privy to that. (Note to self: maybe let them?) No one sees the endless battles I have with services on the phone and online to get the twins what they need. (Note to self: maybe publish them?) No one sees the fact I sometimes, like today, just cannot face the pure difficulty it is being the person I have to be.

No one sees me escape to my safe place of the bath. With my ears under water I can’t hear the hoist or the screaming or the confusion or the nursing tasks. I can’t hear or see the cognitive delays or desperation or pain. I can’t hear the postbox drop open with the next hospital appointment. I can’t hear the phone ring from another therapist discussing the most recent of findings.

We all need a sanctuary. Recently my sanctuary seems to be even more inviting as I have so many new decisions to make for the twins that are frankly, massive. Big fat decisions that surely only grown ups can make. But I am not a grown up am I? Just a little girl who has run away to her hiding den to be rid of the big bad wolves. Also known as, a 38 year old mother who’s frightened of getting the big bad decisions wrong and sonetimes has to hide away where no one can find her. In the bath.

Having children is hard. Having children with needs that are additional or special or whatever you want to call it is another layer. You become a warrior (I like to think a warrior princess 😉),  a lioness, a negotiator and sometimes you become a down right stroppy mare. A fighter and voice for two tiny people who actually probably possess more fight than me. But being all those things, ALL OF THE TIME, in itself brings grief, doubt, sadness, anger, exhaustion, worry and loss.

I’ve lost count of the numerous times I’ve  been called ‘strong’ (I hate that) or inspirational or whatever. Sometimes I’m not those things. I lost count of the number of times I’ve thanked people for their complementary words whilst I mentally have to turn off the tear factory as whilst I reply ‘yes we are doing ok’ – actually thinking ‘I’m so struggling right now’. Sometimes I think I must be a hard hearted person as I can put on this front – that my heart actually hasn’t torn in two yet despite feeling it might very well do so soon. Or perhaps it hasn’t, because it’s had to reheal itself so many times over the last 7 years. Sometimes, like right now,  as I’ve left Mike to deal with the most recent violent meltdown downstairs of the teeny terror (aged 6 with a temper of the Hulk), I run my cowardly escape to the bath. Call it a coping mechanism, call it tiredness, call it just getting by. Not often, but just sometimes. When I just don’t know what else to do. These two twins are so adorable, so cute and I love the very bones of them, but by gosh does sometimes being their mummy qualify for being an olympic sport.

Sometimes I talk, it’s easier just to not. But sometimes I talk. I don’t always want advice though. I love the concept of people wanting to help me, and I particularly love the idea that someone somewhere will have the right answers to all these decisions. But sometimes I don’t want advice. I just want, sometimes, the response to be ‘gosh, that is absolutely totally shitty’. And I shall agree. And then we can move on to talking about what happened in Eastenders or what I’ve got in for dinner. Sometimes there are no solutions, only agreement that this occasionally totally and completely SUCKS.

It was just this week I read a blog of another mother who has a child with a disability. She talked about acknowledging her own grief as ‘perpetual grief’. This resonated with me. It means this will not face a conclusion, it will not have an end. The grief of the loss of what should have been will never go. It’s there, all the time. That hit the nail on the head.

Things should have been different. Things shouldn’t be like this. I shouldn’t have to look at special schools or fight wheelchair services or dodge NHS politics or have a meeting about the life expectancy of my son. I should be chasing them up the stairs to make sure he’s done his homework….but oh – that’s not our reality as he can’t run and he can’t write.

So, I shall make sounds of apologies to anyone who came here to read yet another positive spin on life from the Smith house. This one wasn’t so rosy. But I shan’t apologise for my inner thoughts and my current escapism to the bath. We all need time when we escape, eh? It doesn’t mean I love them less, it means I get out this slowly going-cold water to carrying on loving them more. And, to be honest, you’ll never find anyone who COULD love them more, and that’s because of their complexities, not in spite of them.

And cue – knock at the bathroom door – guess that’ll be tea time then. Time to cook them something which their difficult swallows will allow and avoid not wanting to drink excessive amounts of gin when they scream blue murder that there’s something remotely green on their plate. I do my best. Sometimes I balls it up, but I try and I guess that’s all any of us can do.

So less than rosy, but hopefully honest. It’s ok to say you aren’t ok. At the moment, I’m not ok, but tomorrow is another day, and I will be fine. To any other mummy or daddy that finds themselves in a ‘special needs parent’ bracket, I hope you take that message from this. Just that you are doing fine, even if it feels you aren’t, and you shouldn’t be sorry about that.

I am sorry though that maybe I’ve rambled on, in 1900 words with no pictures. Perpetual grief is in your heart and your head and your veins.  There isn’t a picture that depicts ‘perpetual grief’ here – equally there is no picture that displays me in the bath. This isn’t that kind of blog. 😉

Be happy x