Saturday, 14 July 2012

Dear Alex, and it strikes again...

Little Mitzi-first day at school, first ever uniform...

July 14th 2012

Dear Alex,

And again it strikes. Fists clench, teeth clench, tears cannot flow. I have to gulp it all back, force it in, slam that iron lid back on the emotions I need to expend to cope with what has just happened.

This morning I feel like we’re going places, all week I have felt the same, we march on, and I feel like we’ve had it easy (well, relatively) and this is the other side. I have spent a week in relief, safety, praising the Most High. Now again, it strikes.

Even Monty this morning makes the comment he’s excited to be going to see you. It feels too good to be true…it is.

You are frustrated, so hungry you’re driven to biting hard my arm; crying and I have to deal with it in front of four kids looking on. You left teeth marks.

Yes I know it’s not the real you, but the consolation of that? It’s worthless, because where is the real you then? You bit me hard. I suck in the pain and get you a yoghurt, four kids with cabin fever wanting drinks, treats, attention, me.

Then the most part is spent with you in tears, angry. I have to call it a day, it’s too much for everyone. I cannot cope; the kids don’t understand and demand more of me. You need me to help you, I can’t do it all. I feel like screaming ‘I CAN”T DO THIS!!!!’ oh for a minute of a different life, a happy family life…why not us? Why can’t we be a ‘happy family’?

You get so worked up you shout, and you lash out, head butting me and grabbing me hard. Panic attack arises in me, but I HAVE to deal with this, with four kids, on my own…

And today, I feel the anger as a result. Why us? Why? Where are you God? Can’t you help?

Awakening my heart to beat again this week, I felt the security of letting go, thinking ‘it’s all alright now, on the up’ and then the visit I have been telling the kids to be excited for as they’d see such a difference in you, turns into this.

It was a stifling experience, and after it all, I just have no choice, I have to walk out, being OK for the kids, feeling the pressure. Feeling like I should be there with you, for you. And I take them to a party, I can’t look the other parents’ in the eye, I’m so choked up.

Why do I have to keep on ‘just being alright?’ keep on slamming the lid shut on how I am? Where do I actually come in on all of this, when do I have space?

A monster of anger has got a grip of my throat; I make it through the party, switching off in their conversations, trying to appear as though I am ok, that I am with it. But I am desperate.

Then getting in, with tired muddy kids, who have picked up on how I have been, who have seen daddy being the way you have been. There’s nowhere to park where I live, I feel like ramming cars out of the way, smashing my way through the front door. I reach the sofa, having got the kids into the bath, I need to scream, to let it out, I have my fists so tightly clenched I can hardly breathe. I pray to God to give me the strength to get through bedtime. It's tiring being alone at these points...

No, tonight, today, none of this is OK, none of it is alright. I am angry I have to do all this, how can I possibly? How is it actually possible for one human of little strength to keep battling like this?

My feet drag, my legs pull, my weight, exhaustion swamp me. Entangle me…

Lola spills my cup of tea all down the back of the computer-I stay calm, there’s cat vomit on her freshly washed, put back on this morning, bed sheets, I quietly pull them off and shove them in the machine again. Naming blessings, but not really feeling it. Someone’s put a party popper in the tumble drier, it explodes. I smell burning plastic, forgetting I’d left dinner in the oven to cool along with plastic plate and plastic spatula, it’s all melted, I lift the frying pan out, my only frying pan, the handle cracks and dinner falls all over…well, at least the dog has his dinner prepared, on the floor.

Thank you I can make another cup of tea. Thank you I have the ability to get bed sheets off, and a washing machine to re-wash them. Thank you for the abandoned cat Monty found. Thank you for rice cakes and butter and hunks of cucumber for the kids’ quick tea.

But I don’t really feel any of it.

Then the kids want a puppet show before bed. They love this. It’s become a way of safely talking about you, how they feel, of play, of banter, of fun and hysterics. Of me spending time with them, curled up on their beds.

I do it. We laugh; I push the panic to one side.

My frown is deep, my hands tremble, and I write all this. I feel calmer, but tonight I feel like I can’t go on much longer.

And how can this be after just this morning feeling the calmest I ever have felt, the hope, the beauty of our son’s words at looking forward to seeing you, after the heartache he’s been and is (as they all are) going through.

How can a cavern so deep have been opened up and sucked me in so hard that I am lost, deeply covered, feeling unable to scramble out…

This is so volatile this path. I need strength, but I cannot get it from me…

Maybe tomorrow will be different…And the party popper in the tumble drier actually did make me laugh...

Me xxxxxxxx

Thursday, 12 July 2012

Dear Alex, healing...

You swore SO much putting this tent up!

12th July 2012

Dear Alex,

Red kites soar, wrapping themselves around the wind, the sky…exuding tranquillity, peace. I stare, and try not to swerve the car….!

Somehow, I cannot understand, why now, it’s as if a huge fog has lifted, as though months of drifting, unaware for the most part, a veil has been lifted, blown down. You gain strength, I feel a presence in you, around you…it’s as though I can feel the healing…

 Following a migraine, a friend catches me this morning, eyes like the proverbial p holes in the snow, squinting, staggering, late on the school run. She offers to look after Esmie, who did not want to come into hospital today. Biting down on my initial ‘oh, we’ll be fine, thanks’  reaction, I gratefully accept the offer of help. I know for Esmie, for me, it’s the best solution. Esmie is happy.

I get to hospital, there is a problem, you have pulled out your feeding peg in the night, they cannot get it back in without surgery. Gulping back fear at the thought you are ‘nil by mouth’ and of the medical procedure, I am anxious, as are they all, you have to have it put it back in to hydrate you and top up your intake of food. The speech therapist (who surveys your progress and is responsible for swallow tests, feeding and so on) is called. She has been, yet again, floored by your progress. Last week you were moved on a stage again, single cream consistency drinks. Two weeks prior to this it was double cream, weeks before the swallow test she had done was the most dangerous she had ever done she said…and was therefore extremely hesitant to try again. When she did, she was astonished, and double-thickened drinks came shortly after. Today, she says honestly, she’s not overly concerned. She thinks they will be able to get enough fluid and food into you naturally…! There may be no need to put a feeding peg back in- AND free fluids, no thickener!

She cannot put her finger on your astounding inexplicable progress in medical realms…

Prayer heavily follows your progress, many pray, send thoughts, energy, asking for more healing, holding you up…

Therapy today is a room, a bed, lavender oil, music, set up for you and me to just ‘be’…I have often requested some physical freedom for you. Always strapped into your chair, held, surrounded and hemmed in, I have asked for some ‘space’ time for you, even on mats on the floor where you cannot go anywhere, or do any harm! Today, my request is here…

We listen to music, you are transferred onto the bed, I lie next to you. Window next to us, I lie, I give in, I laugh and ask you if you mind if I cry for a bit? You smile and stroke my hair…that’s just tipped me over the edge! And I do, I cry. I cry relief, healing, witnessing your progress, at not squinting quite so hard to see the light at the end. Out of the window I watch the clouds pass by- a kingdom of energies, tracing, racing patterns out, still, ballooning. Skies that speak a myriad words, express emotions in their grandeur, eloquence.

What a time we passed, happy in each other’s arms, your eyes are open, your touch never ceasing, your skin’s smell. Your smile, which does not leave your lips. We lie together in heaven…and again, I feel it. All the longing and the heartache for you to progress, it feels like it is here, the healing.

Afterwards, a comment is made ‘Alex, the muscles on the left hand side of your face-they look like they’re working! I have never seen that before’…

You smile, your eyes shine, glisten, as do mine with tears as I have to leave…

How can I show you my love for you? My hopes, my fears that have crushed me at times, suffocated me…now I feel differently, I feel (almost!) an inner peace, a hope so furiously ignited that I breathe it with ecstasy…you’re coming back…

Me xxxxxxxxxxxxxx

Wednesday, 11 July 2012

Dear Alex, a humbling day...

July 11th 2012

Dear Alex,

Boy tears now fall, he’s thrashed, let out, blamed, slammed, now I’ve approached. I rest, he turns furiously away, voice hardly working, I can hear the anger, the grief in his throat. I try to reach out, console, my hand is whacked away. I stay; still, crossed legged, waiting. Taking his own time, trying not to push, just making sure he knows I am there. He gives in, it’s bubbled frantically over, he throws himself into me, ‘I miss my dad’. There, he’s said it, acknowledged. ‘So do I’ I whisper and cuddle my boy hard, and tears roll.

He now has his turn in my bed, mummy’s nest! He traces the patterns in the bed head, humming ‘paradise’ by Coldplay- possibly THE worst ever written song, sorry Coldplay, but there’s nothing significant about him humming ‘para para para para para para dise….’ My bed is certainly not. But he hums, and I listen, our boy soothed, and I write to you, Alex, as he does. Girls asleep, the day’s almost done.

Hail stones pound, shaking the ground awake. Our girls' summer dresses held up tight, socks, shoes scattered, the kids chase through the ankle high puddles, little bottoms bared, freedom, their feet find. Luckily other mums did not frown too hard, although I do not know it made them smile as broadly and laugh as loudly as me! 

You miss all this...

It’s been a disjointed day. You were asleep in your chair almost the whole time I was in, quiet. I did get a smile. I therefore spent the morning holding your hand, chatting to others, Esmie on my knee.

I ache now, shoulders, head. No you to give me a massage, or tell me to shut up whinging! Just, as usual, no you…

So many people are involved now, on board, trying to ‘make waves’ for you. If you knew how many have done things, how many people intend to. It’s astonishing; I am surprised regularly by the kindness of others. Just today, after an initial brief chance encounter, people who don’t know me, you, the kids, sit with me, planning, offering help, organising. Their energy, kindness, I cannot put into words. I am truly humbled by these guys*, and others who want to, and have, helped.

My head continues to pound, despite tablets, I am going to have to go.

Be awake tomorrow…I need you to talk to.

I miss you, more every day…

Me xxxxxxxxxxx

*(You guys know who you are and as I haven’t checked with you, I am putting no names up!)

Monday, 9 July 2012

Dear Alex, if there are a few things I've learned...

July 9th 2012

Dear Alex,

Autumn scorched leaves in early July; Summer has not yet graced us with its warmth…

Yet I have found, through the bulging rain filled skies, divine scenes and promise... Clouds lined darkest grey, giving rise to lighter grey, strikes of white light penetrate with a sun striving to pierce the threats of rain.

It hasn’t (or has rarely!) succeeded. Occasional sun, but seemingly months of rain. Reflecting the tears I have shed, I think my tears alone have resulted in the final lifting of the hosepipe ban!

The frustrated gardener in me has finally got hold of pots, to grow my own take away garden. Always renting, I have never had the motivation to plant flowers, grow beautiful gardens in places I may move from. But now settling, feeling some ‘space’ some slowing, I plant and grow, and relish the buds developing.

You are so low when I visit today, feeling the cold of the food they put through the stomach peg, you hold onto me as the nurse does her duties. All the invasion, all the different people, having to try and compute and understand your surroundings, not being at home, waking up on a normal day with me and the kids, all be it at stupid o’clock…I think you’d chew your right arm off to have that instead.

So much to realise, understand, so slowly it happens as the neurons in your brain fight to find new pathways, fight to be revived and take on new life.

Regenerating dormant brain cells to find new pathways through and winding around damaged areas. It is truly incredible what the brain can do, given the right stimuli and time.

But this is just it, time…

Time, which races by, snatches years of lives, has children growing, moves us all on. And yet you, I, wait for rehabilitation, re-educating your brain. You start from scratch, the brain has never done this before!

If there are a few things I have learned from this, it’s patience, endurance, tolerance, re-shaping expectations, seeking hope where none can be found.

This is an excruciatingly painful phase, I believe you are aware now of your situation, you are aware of how you used to be, and have no idea what to expect. And honestly, no one can tell us. Which is why a consoling ‘don’t worry, babes, it’ll all be fine’ is not a truth.

All I can tell you is that we are together in this. I will never give up, and I know neither will you.

It’s just learning strength, finding more strength than you ever imagined possible. Love through one of the toughest strains that can be slung carelessly at someone; ‘here, deal with that one’.

No one can tell us how far you’ll get, but we just have to trust. Believe and fight. Forever maybe, but rather an eternity of that than to have lost you altogether…

Fight on my lion heart!

Me xxxxxxxx

Sunday, 8 July 2012

Dear Alex, slowing down the race of life...

Leaving France, 5 months ago...

July 7th 2012

Dear Alex,

Cupcakes cool on the racks, the smell of baking fills the house. I (geekily) truly delight in the fact I can do this, (not well, 25 sank) but the appreciation of baking, mixing, cooking, rising, cooling then icing…I can get my head round it, I enjoy it, and I am capable of doing it. These days even drinking a cup of tea I am grateful for, I should always have been, and I have learned to be grateful for the simplest of things.

It makes me realise the pleasures in the moment. Challenging my focus, not 'oh, man, I only have 5 minutes for a cuppa’ But, ‘wow, I have 5 whole minutes to down a cup of tea, which I am able to make, drink’ and in appreciating it as a much bigger thing than I did in the past, I am drawn to the moment I live in, enjoying simple pleasures, offering thanks for all these gifts…

I have calmed, once always frantic, hence my ‘manic mum’ name, mopping floors, cooking, doing children, animals, well, all sorts, and in making myself take these deep breaths of gratitude for it all, I see more, I appreciate all, I feel hugely blessed and balanced. No need to frantically go at everything, never appreciating, always performing with such speed, life was a race.

I sit and eat an ice lolly with the kids in the garden, we chat, I dwell, I delight in their stories, smiles, niggles, all of it, and time has slowed, because I appreciate the moment in a very real way, by being thankful for each second, and each thing I have to do. I do not do any less, I guess I do a lot more, now! But my eyes and breathing are open to gratitude speak, and it’s slowed me down internally.

Today you hear the kids voices, each time they come in, your serene smile never leaves your face, you close your eyes in peace, you reach out continually to touch one of them, stroking their hair, feeling my watch on my wrist, my arm, enjoying, basking in family time.

You are different when they are there, so peaceful, relaxed, absorbing them, their love, their chatter, it is so powerful the energy kids bring in their innocence and chat, twirling in too big dresses, falling to the floor, sitting on your lap drawing. Asking you questions, checking you’re not too cold, too hot. Looking after you.

I go to bed late at the moment, I do not sleep well, can’t get to sleep, it must be a phase. I am just unable to wind down.

But my head is filled with thoughts of you, your incredible progress, the fact that today I said I’d be back soon and you replied ‘you’d better be’! you have made a few jokes this week, your character seems to be bubbling on up to the surface a bit. Gently breaking through at times, and it’s as miraculous as watching a baby take its first steps.

I am content; I love how you seem to have stepped up another level. I chatted to you today about how I felt that at the moment you needed to pause, take in fully where you had got to, rather than getting frustrated with the rest you still have to do, I felt that I should tell you that you need to look back, and not forward for a while, to stake an ‘Alex has done this part’ flag in the mountainous journey of achievements you have made so far. Time to look at where you have come from, not where you still need to get to.

You nod, understand, and squeeze me so tight and tell me ‘I love you’ when I tell you I love you, you say ‘not as much as I love you…’ something you used to say to me before!

I am on cloud nine at the moment with your improvements, although I now have to go and ice precisely the 30 cup cakes that did not sink, and it’s already 10.30 pm…!

I do love you Alex, I am so overwhelmed by you, and although we have so much further to go, we have come so very, very far…remember that…

me xxxxxxxxxxxxxxxx