A picture paints a 1000 words?

fullsizeoutput_31a9

When you look a this picture, what do you see?

A smiling girl (admittedly that’s probably stretching the use of the word ‘girl’) and her dog? A woman who looks tired, definitely in need of a bit of slap (literally and figuratively?!) and probably some air brushing?

This picture is so bittersweet in so many ways that I *almost* can’t bear to even share it.  My beautiful dog Buddy is in it and he’s no longer with us, departed over the rainbow bridge to be with other furry friends. It makes my heart ache all over again but he still brings warm thoughts and a semi smile to my face nonetheless. The power of canine love.

But what this picture represents is so much more than the image at face value.

Just over one year ago this picture was taken in the reception area of a psychiatric hospital. I was suicidal and had been admitted two days previously having reached crisis point and having made the decision to end my life.

Even trying to write that phrase feels unreal and melodramatic.  Like a bad soap opera or overly prosaic novel.   This stuff doesn’t happen in the ‘real’ world. Except it does.

I don’t know if it was a surprise when I eventually confided in some of my closest friends about what I had done and what at times, it feels like I still intend to do. In some ways reaching that point was a huge shock, even for me.

If there is such a thing as a poster girl for depression, I’m not certain mine would have been the picture used (hopefully not this one anyway…it’s not my best side!) I was and still am (usually) a glass half full type person – I’ve said it before and I’ll say it again – a glass half full means there’s still plenty of room for more wine!

See, I crack jokes, talk a lot, especially when nervous, I smile, put make up on, clean clothes, prepare meals, answer phone calls etc etc so how can I be depressed? And therein I think lies the crux of it: what does a depressed person look like? What image does someone who has reached the end of their coping skills project?

I wouldn’t dream of speaking for others who have gone through and continue to battle their own demons. But in my experience, depression is such an insidious thing. So even if you seem to be the life and soul of the party, the one that is strong and capable, dependable and reliable, it doesn’t mean you can’t experience the gnawing, dragging, emptiness. The feeling that it’s all too much, no way out, nowhere else to run to.

Too much effort, too much expectation, everything from getting up, dressed, one foot in front of the other a herculean effort. But it doesn’t mean you don’t keep DOING all those things. Sometimes the doing of all those very things is one of the ways you keep some kind of a handle on it, albeit a wonky one.

So it doesn’t in any way seem surprising to me when I read accounts of how someone has gone about their day-to-day life, seemingly taking it on the chin, even appearing to have a great time attending events, get togethers, nights out….and then they end it all.

The shock and grief to their nearest and dearest must be bitter, unpalatable and shrouded in disbelief.  There must be soul-searching. What did they miss? What clues didn’t they pick up on? How could they let their friend/partner/family member down so unreservedly? Why couldn’t they be stopped from choosing this final absolution?

And anger, only natural too. Rage at their selfishness; that they left everyone in this mess, they stopped trying. Took the ‘easy’ way out.

All these things run through my mind regularly, over and over, like a fuzzy old-fashioned film negative.

I feel burdened by the weight of other people’s expectations of me and the damage that would ricochet through our family unit if I achieve my objective. I once had a crisis mental health worker give me the statistics of how many young people go on to take their own lives in the event that a parent ‘chooses’ to commit suicide. Harsh and horrifying and heaping on the guilt. Crafty, effective move that was.

Perhaps because so often my every day life involves meetings with professionals in relation to the needs of our 4 children, it is so important (to me) that my armour is in place. Keeping up appearances, stopping them from defining me as *that* mother, that weak, special snow flake.

The vast majority of professionals we deal with have been nothing but supportive and helpful, even sympathetic but there are always a few, (ironically the ones who in my view have most failed our wider family), who would like to define our ASD child’s difficulties by my ‘shortcomings.’

The fact of course that respite care was proffered but never organised, dangled like a mesmerising carrot for so long, just out of reach; the fact that our child required appropriate specialist schooling and wrap around care, the inevitable self harm, suicidal idealisations, violence against myself and our other children, the regular police involvement, ambulance call outs, CAMHS care and so forth, all accumulated into some persistent, momentous ball of hell unravelling at lightning speed had nothing to do with my break down at all. I’m *just* that sad and pathetic and attention seeking……

Mental health is still, despite the (much-needed) increase in awareness and highlighting by people like the Duke and Duchess of Cambridge, Prince Harry and high-profile celebrities, radio presenters and such like, a taboo, a dirty little secret.

Admitting that you have mental health difficulties, at least to me, feels a bit like shouting out the word VAGINA (or other awkward word of your choosing that doesn’t tend to come up in day-to-day conversation!) on a megaphone, naked on stage to a silently packed out Wembley arena, being globally transmitted by multiple satellites……

I can only speak for myself but having chatted to other friends going through similar concerns, I know they too feel a sense of shame, being perceived as somehow weak and feeble, lessened.

One of the most crucifying  experiences I had in the latter months of last year related to the ill-health of our youngest son. Due to severe gastrointestinal difficulties culminating in losing 5 Kilos in a 4 month period, an extended hospital stay and the insertion of a naso-gastric feeding tube, the lead paediatrician (also our regular consultant for both G-Man and Minx) called a multi-disciplinary meeting to discuss both children’s health concerns (they share many similar aspects) and a plan going forward.

Present at the meeting (in addition to the consultant) were an Occupational Therapist, Physiotherapist, Dietician, Speech and Language Therapist, Community Nurse, Student nurse, Ward Sister, Disability Children’s Team Social Worker, Paediatrician, myself and Mr DNTW’s and a few others I can’t recall. I think the only person who wasn’t there was Uncle Tom Cobley*

The consultant outlined the various medical difficulties, asked professionals for observations and then having brief knowledge of our background family situation asked for us parents to outline relevant events over the year.

It’s trite but during that account, it did feel like time stopped. There seemed to be a palpable and  collective withholding of breath as I relayed the events of significance. I did my best to remain factual, honest, hiding nothing but not (at least I don’t think) boring them to slumber and derailing the topic with a pity party for one.

I couldn’t make eye contact. I didn’t dare look up. My attempt to be detached failed. I cried; big, fat, salty tears of shame. And of course that always brings on the snot. So as I crumpled tissues and wiped and snorted my way through this hideousness, it brought with it crippling anxiety; the awareness that I had laid myself especially vulnerable to the people I need to work with for my children’s sake on a regular basis and I was in their eyes, at least to my thinking, diminished, fallible.

I must take pains to clarify that not for one moment do I think the consultant was doing this to be unkind or humiliate me. His request came from a genuine place: to what impact psychologically were (are) G-Man’s difficulties related to what is going on in his life and how as a collective could we address this for the best patient care.

It’s an ongoing situation. G doesn’t have an eating disorder; his medical ‘foibles’ are complex and require further investigation (even as I type a referral to Minx’s gastro team at GOSH is on its way), interwoven with understandable anxiety around food , the pain it causes and the bigger picture. He’s also under CAMHS.

That there has been a fall out from my ‘situation’ on all the children, there can be no doubt. Even now, if I am unwell physically or seem low the children are hypersensitive to me, like little meerkats on guard.  It will take time for that to subside and what I am beginning to realise, it may never go away entirely.

I’m still recovering if that’s the right word to use. I feel frustrated with myself and angry. There are too many should’s/would’s/could’s (which my mental health team would rap me over the wrists for) – unhelpful words those – and I suppose like the layers of an onion, or perhaps the facets of a diamond, (definitely preferable to root vegetables in my eyes!) are to be evolved and discovered in time.

Therefore, just as the 4 c’s in diamond terms are all important – cut, colour, clarity, carat weight –  we know there is no such thing as a flawless diamond; technically speaking even those given a flawless classification have the tiniest of blemishes or imperfections – (bet you will sleep better knowing that hey 😉)  Having a love of all things sparkly and glittery, I’ll happily compare myself to a flawed diamond (less of the rough diamond please).

Perfectly imperfect. Needing a bit of a spit and polish.

fullsizeoutput_342a

  • Uncle Tom Cobley origin:
    “Uncle Tom Cobley and all” is a well used British expression to define (in slight derision) a lot of people. It’s akin to the expression “the world and its wife” and  comes from from a Devon folk ballad (Widdicombe Fair in case you are really interested!)  Uncle Tom Cobley (and all) is named as the last of a long (long!) list of men with a chorus ending Bill Brewer, Jan Stewer, Peter Gurney, Peter Davy, Dan’l Whiddon, Harry Hawke, Old Uncle Tom Cobley and all.
Advertisements

The Thing……

IMG_4792

There is a thing in my house.

Strictly speaking, it is things plural. They seem to be arriving by the truck load on a weekly basis and they are lurking in my house bathroom, staring at me benevolently every time I go in. If I’m feeling cross and argumentative (me – mardy? pah!) I might even argue they are glaring at me malevolently but this would be a bit of a stretch.

Of course, the presence of the things may explain my sudden swerve of the family laundry basket, (rather than just pure laziness of course!) such is my desire to avoid the things. I have adopted the ostrich principle – if I cannot see the things, they do not exist and all is tickety boo. Except that is false logic on many counts, especially when the tribe are shouting that they have no clean school shirts or pants. Meh.

The thing about the things is they cannot be avoided. Their very presence means they are the elephant in the room and we all know that elephants take up quite a lot of space….and they can make a lot of noise and mess too.

I have dealt with “the things” before and some of the things we have said goodbye to, I confess to feeling a tad nostalgic about since they reminded me that my children are growing up and gaining new skills. But now the things are leading us on a very different path and one that however much I read about, empathise with and nod sagely about, it’s one that I didn’t really expect to travel.

I know ultimately we will become friends with the things; that they will blend into the background unobtrusively and only every now and then will I have a little jolt that they inhabit our lives. In fact, they will make our lives, more specifically, the Minx’s life much, much easier. They “things” are not the stuff of nightmares but they are certainly not the “things” I day-dreamed of in a Mulberry style handbag kind of a way either. (Hint hubby, I have a birthday coming up in November and e-bay have some great second-hand ones if you need any clues….#just saying#)

So what are these “things” I am being so wordy about? Adaptions, aids, specifically contraptions and devices designed to help and support the Minx and us a family when she is fatigued and unable to do all the typical things that an almost 7-year-old can do.

Don’t get me wrong, I’m more than grateful that we have been offered these things, all free too (yes my US friends – FREE!!) and without any kind of fuss, fight or drama. Some might say, I’m all about THE DRAMA (an outrage, natch!) but when your occupational therapist reads the reports from the professionals and chats to you about every day life and the impact it has on pain, fatigue and energy levels and agrees without a murmur that various devices are needed, it’s a bit of kick in the head…with a stiletto.

By (almost) 7, most typical children are independently able to dress themselves, feed themselves, attend to toileting and bathing issues, albeit at times grudgingly but with minimal input from the wider family. They race up and down stairs with nary a care and their energy is boundless. In fact, having 3 older children, I have been that parent plenty of times, begging for mercy at the end of the day: “WHY won’t you got to bed you little sh*ts, sweeties??”  “What do you mean you are not tired?” #weeps#

But with the Minx the lines are blurred, the boundaries not so clear and every day is a draining juggle (for her and for us)  of energy levels, a battle of wills, of do’s and don’t’s. Hubby and I are very clear that we do not want to disable her in any way and it’s hard to be the baddy and call time on a fun activity when she is enjoying herself, especially with her friends. Nonetheless, we are also mindful that we are the ones that pick up the pieces, (literally) that see her struggling with pain and wobbliness of limbs, lying on the floor crying because she’s just done too much, unable to eat/drink or sit up properly. So the “things” will help us in supporting that and I have no doubt that in just the same way as I initially felt about her wheelchair, we will learn to embrace the things presence and welcome the support they will give her for her fight in independence.

Minx already has a specialist supportive chair for eating at the table and we have adaptive cutlery, numerous beakers, straws and items to make eating and drinking generally as easy as possible. We have used all these for a while with great success.

Recently we have collected a little frame for the toilet that she can hold on to, to support herself and balance. She will require less assistance with getting on and off and my back will thank me for sure. We have some nifty bath steps to make climbing in and out easier as well as a bath-board so she can slide herself straight across. All more or less manageable in my brain processing since they are not too far removed from the bits and bobs you use with little ones for their independence.

Then it steps up a gear and there is a bath contraption/harness/thingy  (technical terms obvs) for days when she is really weak and fatigued and can’t manage to get in/out unaided. At the moment, it’s sitting unceremoniously in my hall way waiting to be unpacked and assembled. It’s debatable how long it will take me to get my head round that one. I think I will look at it like lego building with my children – a necessary evil but sometimes productive and fun….especially if you follow the instructions straight out of the box.

As we will shortly be buying the house we moved into, we have been able to meet with the community Occupational Therapist (OT) to look at the stairs. Whilst at times, Minx can gambol up and down them like a goat, at other times, she is unable to even make it up the first step. When really fatigued, or in pain from hyper-mobility, it’s incredibly difficult to carry her because she is like a rag doll, unable to support herself or assist by wrapping her legs round you, or grip for support. Not only does this play havoc with my back and shoulders, I’m terrified of dropping her.

We also know that as she gets bigger it will only get harder if she continues to have episodic weakness or in the worse case scenario, progressively deteriorates  – another unknown when living with an undiagnosed child  – and since nothing about any of Amelia’s medical issues makes any sense, it is something we have to consider future proofing against.

IMG_4570

Lying on the floor IS THE new vogue you know…..

We have been asked to consider both a stair lift and a through floor lift which would go directly into her bedroom since our ground floor accommodation at this point would require major alteration works to offer her a bedroom/bathroom facility at ground level. Plus since Amelia is on overnight feeds and monitering, it’s much easier for her to be closer to us if we need to get up in the night for her. Trust me it’s hellish enough dealing with the beeping (not a euphemism) pump without factoring stairs in a sleep deprived (or should that read depraved!) state into the equation!

I had vaguely got my head around the stair lift idea, largely because I am really struggling with lifting her but ridiculous as it sounds, the through floor lift somehow makes Minx seem “more” disabled. It’s like the time I first heard only of my children talking about his sister to a friend “she’s disabled you know.” It was gut punching.

One dictionary definition of the word disable reads thus:

verb (used with object)disabled, disabling.

1.

to make unable or unfit; weaken or destroy the capability of;incapacitate

He was disabled by the accident.

2.

to make legally incapable; disqualify.

We don’t think of the Minx like this at all.

We remember the words of consultant and Doctors telling us she might never walk, run, hold a pen and we look at how far she has come. We look at what she has achieved  and continues to do, every day, amazing us with her beautiful drawings and feistiness, her jumping and climbing and we recognise how truly lucky and blessed both she and we are.

We are privileged to be part of the special needs community that celebrates children’s every achievement no matter how big or small and it is not benchmarked alongside their typical peers. Even so, we are acutely aware of feeling fraudulent within that community at times, knowing how incredibly capable Minx is alongside many of her special needs friends.

She even calls attention to herself at her mainstream school. The well-meaning shy smiles of sympathy as I wait with her wheelchair after school followed by the utter incredulity as she on many days bounds out and then leaps on the climbing frame waiting for her brother.

IMG_4783

yes, yes nothing to see her……move along please…..feed the monkey at your own risk….

Of course we know the truth and I shouldn’t need or have to justify ourselves to anyone but it’s hard at times not to feel a bit of a lemon. Nonetheless, from bounding around one minute to being slumped and unable to get up another is a regular occurrence in this house and so we need to encourage Amelia’s abilities and achievements whilst balancing them with the mundane every day requirements such as bathing, toileting and eating. Any way that we are her parents can support her in doing that, be that with physiotherapy, strengthening exercises, or the use of specialist equipment, then that we will do.

As the OT explained to us, a through floor lift would ultimately offer Amelia even more independence since she would not have to wait for someone to strap her into the stair lift seat safely, accompany her up the stairs and help her disembark afterwards. She would be able to use her wheelchair straight into the lift and in her bedroom when needed or just use the lift by itself to go up and down when stairs are too tiring so it’s certainly something to think about when our wish at all costs is to encourage Minx to maintain and be proud of her independence.

I guess her independence is one of the greatest gifts we can give her. Nevermore so was this illustrated to me than in her sheer delight when we talked about the self-cleaning washer/dryer toilet option. She has very weak hands and her contractures of the joints in her arms, wrists and fingers means toileting issues are very difficult for her.

I won’t go into gory details but suffice to say, her little face when told about this amazing possible adaption and her incredulousness that she wouldn’t have to call anyone for assistance when she had “performed” was fabulous to behold. Her reaction when we told all the children last week that we had sold our house in Jersey said it all: “Yey mummy, now we can buy the new house and I can have a magic toilet!!”

So I’m off to wrangle with the “things” and re-arrange the bathroom. Knowing the Minx she will want to bling up the various bits of kit anyway and by thinking positively, drawing inspiration from her, I can stop regarding them as public enemy number one and start touting them to Home & Life style magazines as up-cycled life style adaptions. (Tongue firmly in cheek.)

#counting our blessings#

Until next time……..