Wake Me Up When It's All Over

Apologies for the length of time since I last blogged, but life has thrown us a few curveballs and I have been up to my armpits in uni stuff. Studying psychology is fab, and the actual work itself is manageable; it’s the juggling act I have to keep doing with everything else which makes life a little more than tricky. I can’t afford to take my eye off any one of the countless balls for fear it all comes crashing loudly down.

As you are probably aware Children In Need happened this past Friday. This is an amazing event highlighting the plight of many families up and down the country who, for varying reasons, find themselves struggling. This year’s theme was Superheroes, and I wanted to focus this blog on the superheroes in our world that help keep our lifeboat afloat in this crazy storm we call life.

The last few months have significantly changed our outlook. B has been struggling with epilepsy on top of all his other conditions, and the stress this causes is immense. First up, no parent can watch his or her child suffer day in, day out without it taking its toll. Honestly, there are days I find myself dreading spending time with him because I don’t know how many tugs my heartstrings can take before my whole heart comes unstitched. Twice daily we need to administer meds, which constantly change depending on what we think is being effective, and what we think really isn’t. B is highly uncooperative when it comes to this, and I can literally feel the adrenaline coursing through my body as we approach him with the drugs each day. It’s like a sick, twisted version of Russian roulette, except there’s so much more at stake than simply money. Then there’s the guessing. Why is B suddenly chewing on everything? Why is he falling over constantly? Is the crying because he feels rough from drug side effects or rough from seizures? How long do we try with meds before giving up? Will any medication actually work? Are we effectively recording all his seizure activity? Are school on the same page? Have we trained his carers appropriately? And the list goes on, a myriad of questions we have to ask, but often aren’t ever likely to know the answers to.

The charity single came on in the car this afternoon and I cried because it summed up exactly how I felt. ‘Wake me up when it’s all over, when I’m wiser and I’m older.’ I feel too small, too little, and frankly not at all equipped to manage my life as it stands. If I could hibernate and wake up when it was all sorted, I would be so tempted to take that option. But unfortunately that isn’t an option, so I’ll crack on, firstly by acknowledging all the current superheroes in my life. Thanks guys.

B, you are a true superhero. You endure more than we could ever know, and still we see you smile. You try your best to communicate, sorry when we just can’t seem to get it. Amazing job buddy, you rock.

Siblings, what can we say. Your life, unlike so many other children, centres on not you, but your beautiful brother. You show no resentment, you display endless compassionate understanding, you help out and D, you even let me cry on your shoulder on Friday with the utmost empathy. Wow. Superheroes all the way.

Carers, you put up with so much, and still you come back again and again to spend time with our boy. To you, it’s so much more than a job. B has won a place in your hearts and you treat him with the dignity and respect he deserves. You see beyond the biting and scratching, beyond the frustration, beyond the seizures to the little boy who melts your heart in the school corridor when he runs over and recognises you. You love him. You are superheroes to us.

Real friends, you are superheroes. You know who you are. You are the ones who cry with us when we’re too exhausted to put words to how we feel. You walk with us, even when it’s messy and it’d be so much easier to just step back. You listen without judgement and you keep on loving, knowing you’ll never ‘get it’ but wanting to at least try. You understand when we bail last minute on arrangements… again and again. You wait in the wings, ready to spring into action should we need dinner, or a drink, or someone to be with us while we rant about how unfair it is, how we’re tired, how the system utterly sucks.

As I sobbed my way through Children in Need on Friday night I realised I’d hit an all time low. I’m angry that my boy has to suffer; angry at the impact it has on him. I’m stressed to the point of feeling physically sick, I can’t sleep, and I HATE the impact B’s condition has on our entire family. EVERYTHING is difficult. It’s all encompassing, and coldly isolating. Tiny routine tasks are consistently mountains to be conquered every single day. The unpredictability is unnerving to the point of constant fight-or-flight, which in turn physically drains every ounce of energy from our bodies. Sleep is flighty when it comes at all-our brains constantly processing our crazy life.

As the stories unfolded I noticed a definite theme emerging. For kids who suddenly become ill, there is a lot of support out there. Probably never enough, but there are networks designed to connect families with others going through similar situations. The social gatherings at hospices for children with terminal cancer, and the support groups for families who have tragically lost a child. I’d just like to add in at this point I am fully supportive of such groups, believing them to be of infinite importance in the health and wellbeing of such families. I can’t even imagine that journey, and I hope I never have to. As society we support acute occurrences fairly well, maybe because there’s an endpoint, or maybe because they generally need less time and resources overall. But the chronic? That seems to be a different thing entirely. How do we react to the elderly family member diagnosed with dementia, or the child with autism who will be forever tricky? Or in our case, the rare chromosome disorder which brings with it multiple strands of chaos, most of which are not curable and do not have a defined finish.

When B got his chromosome diagnosis around 30 months, most people didn’t know what to say. So they said nothing. Of those who did respond, we had some cracking comments, some which hurt beyond belief at a time we were particularly vulnerable and sensitive. Responses that belittled our pain and spoke of over-reaction. Suggestions of putting B in a home and starting over. People asking if we knew while we were pregnant, as though if we had we could have done something about it. It helps me to think about these reactions as borne out of ignorance, without any malicious intention, but it still hurt.

B was recently assessed by the NHS to need a high amount of care, and as such, we now have a package in place which helps to meet his wide medical needs with extra people power. I got to thinking why I still felt so crap since all this support had been put in place, and it struck me like a thunderbolt. It’s not just the day-to-day chaos of making sure B’s (and the other kids) needs are met. It’s the overall social isolation; the horrible feeling that there is no safety net of support. We can’t go on family outings with other families. The topics on our minds are not exactly conversation starters. Nothing is ever predictable so we spend our lives bailing on the few plans we have made. As far as I know there are no support groups or social gatherings for people in our situation. We aren’t great company, mostly because of constant exhaustion, so regular people tend to give us a miss. Understandably of course, I mean who wants to hang out with a family who come with as many complications as ours? For a natural extravert like me, this shit is tough.

But instead of ending on a sour note, I wanted to give you guys some practical tips. How to be a hero for a family like ours. By the way, I’m not fishing for you to specifically help us, I just reckon the more generic information out there, the better the chances for families living with the chronic, long term instability that disability brings to the very core of our beings. So here they are, my top superhero tips. Enjoy!

1-   Be interested.
We spend our lives trying to get professionals to ‘hear’ us, and contrary to popular belief, we need to know other people understand too. Please ask questions; any opportunity to enlighten people about the whys and hows of B is always grabbed with both hands.
2-   When you don’t have words, do.
If you don’t have any words, that’s fine. In fact making a choice to say nothing rather than roll out some crap cliché is a much better call. In which case, do. A hug while we cry on your shoulder or a hot cuppa can work wonders.
3-   Listen to understand, not to fix.
This is a biggie. So many well-meaning people I talk to try and ‘fix’ my shit. They try and jolly me out of being sad, or they tell me how I never know what will happen in the future, or that things could always be worse. This is something they do to make themselves feel more comfortable, not to help me. I get it; it’s tough listening to the hard bits of someone else’s life knowing there’s not much you can do about it. Imagine LIVING that life. Please just listen without judging or trying to fix us. We know we’re broken, and your attempts to fix us just make it worse.
4-   Offer to do something specific.
This is a super practical tip. ‘Let me know if there’s anything we can do to help,’ is a frequently overused phrase. In amidst the roles of advocate, nurse, driver, trainer, employer, mum, teacher etc etc we don’t have time or effort to think through exactly how it is you could help. Just tell us what you’re happy to do. And be specific, the less thinking we have to do, the more helpful you will be. ‘We’ll leave dinner in the porch on Wednesday’ triumphs over ‘Can we bring you dinner sometime?’
5-   Drop over and take us as you find us.
I personally crave interaction with fellow people, the extravert in me is somewhat crushed by this regimented life. Our door is always open for visitors so please feel free to drop by at any time, just give us a ring first so your trip isn’t wasted if we do happen to be out. And once here, ignore the chaos of dirty nappies or children having meltdowns and just be with us in it. Oh, and make your own cuppa!
6-   Don’t make us feel bad when we forget your birthday or have to cancel plans.
We are all too aware how crap we are in the commitment department, and I promise you it’s not through lack of wanting to. Remember we’re constantly limping through on reserve energy, and annoying as it is for you that we often have to bail, it’s infinitely more frustrating for us to miss out on fun stuff, and be ‘that’ friend/family member who forgot an important date. Again.
7-   Love our kids.
This one’s fairly obvious, but please love ALL our kids, not just the ones that are easy to love. Try and talk to B, even when you get no response back. Try and engage BH even when she throws a wobbly right in your face. Often the kids that get the least attention from outside the home are the ones that need it most (that’s definitely the deal with ours anyway!)

Thanks for letting me share. If it takes a village to raise a child, it takes a city to raise a disabled child.
Cities can be the loneliest places in the world.


Please be a hero to someone this week.

Comments

  1. Heart breaking! I have read your blog several times as we have several F/B friends in common (like Liz Rolleston). I respect your honesty and openness. I'd gladly pop over from Parkstone for a cuppa if you'd like some extrovert interaction. I'll send you a friend request then you can see who I am and either message me or unfriend me if you don't like what you see.......

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