Monday, 14 July 2014

The Dead Seagull Society

So lovelies. Today life sucks. I’m not asking for pity, or sympathy, or any of that mushy stuff; it is what it is. I think it’s down to a combo of factors; tiredness, getting shredded on a daily basis, missing family and perpetually grieving the life we watch everyone else with kids our age living. By shredded I don’t mean that 30-day shred phenomenon that’s been going round on the app store; purposely putting my body through torment on a daily basis is something I can live without. Funny that. Shredded is perhaps too harsh a word but for the last three months my arms and the arms of my kiddies (particularly the littlest) have been covered in claw marks and small teeth imprints; the physical manifestation of the frustration my boy must feel constantly. We are entering the fifth week of a medicated B, and so far we are still seeing multiple seizures every day, with new types developing on a regular basis. I’m the reincarnation of Scrooge and Christmas when people mention their excited plans for the weekend or the bloody countdown to the summer break, if every day could be a school day that would suit me just fine. I feel a literal dread in the pit of my stomach when I think about the six week summer holiday, hurtling towards us like a thundering train, indiscriminately flattening everything in its path. I don’t want to allow myself the luxury of looking ahead to September in case I don’t make it through August!

So, getting beat up on the daily, being permanently knackered, watching my boy experience the monster that is epilepsy, and undertaking the epic task of booking in enough respite to make sure that everyone in my house is safe over summer does not make for a cheery smiley lady. Sorry folks. I’m also experiencing another wave of grief over my mum, and battling the perpetual grief of losing a life I didn’t realise I’d planned. I know it’s hard for people to understand since grieving commonly refers to the feeling people have after the death of someone important in their lives. For a long time I felt so guilty and unfounded in my use of the term grief, but what we deal with on a daily basis is just that, loss. I felt awkward for feeling loss when my child was right there in front of me. But once I’d delved into the recesses and processes of what I was thinking, I realised it wasn’t B I was grieving, it was the life we could no longer live because of B’s many and complex needs. And that grief is continual. There’s no end point.

After mum’s death I am gradually re-aligning my head to the new reality of a mum-less life, and although that’s tough, I imagine there will be a point where it no longer stings quite as much; when the salt of watching other people with their mums runs off scars rather than inflaming raw open wounds. B, however, is a constant in-your-face reminder of everything we CAN’T do as a family. Don’t get me wrong; I love my kids more than anything, B included. I would go to the ends of the earth and back to ensure their safety and happiness, something that is put to the test on a regular basis with B. Endless appointments, infinite fighting, physical hard work, becoming an expert researcher in meds and side effects and writing enough reports and logs on him to fill a bloody BBC archive. But as most people’s families grow up, their worlds open up too. Things that were impossible with babies morph into fun activities; going to the beach, heading out on a family bike ride, having a picnic, swimming in the sea, fun at the park, visiting friends. Even a freakin’ food shop is doable. Families like mine get left behind. A trip to the beach equates to S and me tag-teaming each other, running round like loons to make sure B doesn’t drown/run away/snatch other people’s food/steal random beach toys/attack strangers with inappropriate crotch-height faceplants. A family bike ride is the biggest gamble-sometimes B is happy in the trailer, other times not at all. If you judge it wrong you’re screwed. Riding six miles with a wailing traumatised child who is pulling his best Houdini escape-artist move is not fun. Neither is it safe. A picnic…. Hmmmm, have you ever played those maze games with the little balls you have to tilt into place? Yeah, that. Swimming in the sea involves attempting to convince B that he is not in fact a fish, and he really can’t swim to France yet. Fun at the park? Last time we went I had lots of fun wrestling a dead seagull from B’s clutches-he had it by the wing and thought it was hilarious to flap it about. Cue instant shrieks from me as I rigorously shook B’s arm (I wasn’t about to touch the bloody thing), aghast onlookers watching in shock until he finally released the poor creature. RIP Mr C Gull. Visiting friends… well, we gave up on that a long time ago. Infinite apologies. Once we visited a (very good) friend and B clumsily knocked over a one-of-a-kind wedding present vase. The friend in question burst into tears, I felt hideous and B was none the wiser. He’s a one-man destruction cyclone- shadowing him around someone else’s house and restraining him from, oh wait, EVERYTHING, is not my idea of a good time. Oh, and food shopping? Don’t even go there.

A family acquaintance said to me a few weeks ago I needed to stop comparing my life to everyone else’s. This acquaintance, might I add, has experienced minimal trauma in his life as far as I am aware, and as such is in a great position to be handing out advice to those of us with the audacity to voice the fact that life is bloody tough. I know it’s not a comfortable topic for people to hear. Imagine how much more uncomfortable it is actually living it. I’m not into the self-pity thing; it’s highly ineffective in making things happen, but when literally every second of your life is consumed by the life-you-never-planned, it’s nigh on impossible to avoid comparisons. It’s hard seeing typically developing kids the same age. It hurts my heart watching typical birthday parties, when B never even gets an invite and definitely couldn’t handle his own. So while, the sentiment of non-comparing is a great ideal to aspire to, the reality is very different. Hence the ongoing nature of the grief surrounding a special kid and the circumstances we find ourselves in.

Let’s look on the bright side; at least with a post like this the only way is up. Bring on the summer holidays. Come on, do your worst. I’ll do some sort of Hakka to get my head in the zone and I will survive. Cos that’s just what we do. We survive.

I’ll leave you with a few lyrics from my favourite Mumford song ‘After the Storm.’ This sums it up nicely.


Night has always pushed up day
You must know life to see decay
But I won't rot, I won't rot
Not this mind and not this heart,
I won't rot.

And I took you by the hand
And we stood tall,
And remembered our own land,
What we lived for.

And there will come a time, you'll see, with no more tears.
And love will not break your heart, but dismiss your fears.
Get over your hill and see what you find there,
With grace in your heart and flowers in your hair.

1 comment:

  1. Oh Lucy I wish l could give you the biggest HUG, to say it will all be ok. But l don't know what its like to live & walk in your shoes. I hope and pray that life will get better for all of you. Don't forget about you & l am here if you want to rant . Brave strong lady xx

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