Thursday, 24 April 2014

Ten things I've learnt about life with an undiagnosed child

One year ago I started this blog with a post called That boy of mine. It was written to celebrate Undiagnosed Children's Day. Tomorrow is the second awareness day and I am delighted I get to share my blog birthday with such an important occasion. 

Life with a child with an undiagnosed condition means you basically live under a cloud. Some days the sun shines through and other days this cloud is dark, heavy and eclipses everything.

I have learnt such a lot in the past 12 months and as a family we have come a long way. For families starting this journey, getting to a place of acceptance and a semblance of normality feels unattainable.

Gabriel is now three and a half and here are ten things I've learnt in the past few years:

1. You are on an emotional rollercoaster

There are days when this is so painful you'll want to curl into a ball and shut the door on the world. Other days you'll think you are the luckiest person alive. Unfortunately it tends to be your child's current state of health that dictates this. I always find that if Gabe is well, feeding okay and making progress then I am on top of the world. And his health has settled so much now he is older. It doesn't take much to knock you down with a bump - chest infection, horrible negative medical appointment - but we get back up. We are all good at doing that. If you can't please don't be afraid to seek out some professional help.

2. Testing is hell but there is light at the end of the tunnel

It is hard to describe the gut aching feeling of repeatedly holding down your child for blood tests, sedating them for scans and letting doctors poke, prod and pull them on a weekly basis. Waiting on test results after test results is like sustained water torture. You come up for breath only to be plunged under again. Hopefully you have a good team that will do this testing process swiftly and it is over before your child is two years old. Being undiagnosed having exhausted testing is living in limbo - but it is a lot sweeter place then testing hell and the cake goes down better without that lump in your throat.

3. Special schools are lovely sunny places

This one surprised me. When Gabe was little and I'd see the special buses picking up children around town it used to break my heart in two. A doctor had already told us not to expect a mainstream education for him and I couldn't bear it. But as we started creeping through the statementing system and looked around some schools we realised this was a good move. His school is amazing, we are part of their community now and he is flourishing there.

4. You need friends in the same boat
This is why SWAN UK is so important. With a growing membership, there will be people just like you who have children similar to yours. You need people to share gallows humour with - who get it and understand why one minute you are singing the blues and the next giving glory be to the father. I go for drinks with these new friends and it is so good for the soul to drop the mask and be the "you" that you have now become.

5. Don't give up on old friends because they don't understand

If it is early days you are in a state of painful grief for the child you expected. You'll want to lash out and hurt everyone around you. Frustration that no one understands will make you push people away. Pause. Give them a chance. People just don't know what to do and say. When you feel better you'll want that friend who always talks about shoes as you'll feel able to talk about the importance of a good shoe again. You will. Or dresses, politics, football, books, cast of Hollyoaks - whatever floats your boat. Don't let go of the old versions of yourself - let your friends remind you of who you are when you are ready. True friends will wait.

6. Some people will always be bigoted and ignorant

I knew my emotional mindset was getting more controlled when I sat politely and listened to a medical journalist at an obesity press conference dole out uninformed opinions on people with genetic conditions. "If we lived in the animal kingdom, survival of the fittest would mean that these weaker animals would just be eaten then genetic defects would eventually be wiped out." Good to know she is educating the masses. What can you do? Same as people who use words like "mong" and "retard" in chat because they are too lazy to find a different word. I am sure I've used them as a teenager trying to be funny unaware of how hurtful they can be. Let it go. Shrug it off. There are bigger battles to fight.

7. Take control of your medical team

You can. Of course you can. If you hate one of your team, think they are being obstructive - swap them. Go to a different hospital. We travel to see some of Gabe's team and you'll often find the real gems don't work in the big hospitals. Experienced experts of note matter not a jot when you have a child sailing in unchartered waters. It is better to have one willing to go the extra mile and think outside the box.

8. Be selfish - it's crucial

This is so important. I know your child might be very ill and needs you. But he needs you to be mentally fit more. One of my most favourite people I have met on this journey is a mum whose child can stop breathing for no reason at any time. For a long time she lived like a hermit on a knife's edge. Now she accesses a hospice and has time out from the high intensity living to spend time with her husband and other son. She'll be the first to tell you this has saved her. Try and do things for yourself. Please. Something you love. Every now and again. Even if it is train spotting or teapot collecting.

9. Never give up on hope

Just don't. These kids are writing their own books and who cares if it takes them ten years to eat with a fork or take a step. A new medicine could be around the corner that improves that worst symptom and changes their quality of life. Access to better therapists might bring different results. Keep on hoping and dreaming. Who actually knows!!

10. Go and give that child a squeeze

Because they are yours - you made them and they are uniquely fabulous. We might be living a life we never expected but it is our life. The only one we have. Let's celebrate on this special day for our children.

And remember this - together we are stronger.
Happy Undiagnosed Children's Day!

Wednesday, 23 April 2014

How to needle, nag and nudge

Something has happened that I never expected. I didn't plan for it when I was dreaming of wedded bliss nor looking ahead to the magical mummy-dom years. It certainly wasn't one of my life's ambitions.
But I had no choice. It was decreed upon me.

I've become one of them. You might of heard talk of them. They are spoken about in the dead of night in whispered words usually in late night drinking dens. Unpleasant, contemptible creatures.
You might of even come across one or two. Hell you may even be one yourself.

I never expected to become one despite my best endeavours. Never. Not at all. No way.
But I am holding my hands up. I am now one.

I am a nag.

A double whammy nagging, nit-picking wife and a nagging, harassing mummy. It seems I have wholeheartedly adopted a lifestyle that includes besieging, badgering, heckling and hounding.

You may be living in contented domestic bliss thinking smugly I'll never carp and snip at this stud muffin before me. But let me warn you, it doesn't happen overnight. It might take you by surprise. One day you might issue a simple insane no shoes on new carpets rule and before you know it you have the house on lock down until everyone has made their beds and discarded warm undergarments into allocated washing baskets.

Still not sure what this nagging entails. For the poor husband, it usually goes something like this:
  • Telling him to take his shoes off before he has even opened the door
  • Muttering under your breath when he sits down with the paper
  • Sighing loudly when he makes a sandwich (those crumbs don't clean themselves)
  • Waking him in the middle of the night to tell him he is breathing too loudly
  • Commenting on his nappy change technique and Sudocrem application
  • Leaving post it notes on his laptop/car window screen/forehead
  • Telling him just how busy your day is 26 times by text/What's App and Skype (sometimes you even pop into the office to reiterate the point)
  • Commenting on how nice next door looks now it is painted every time you leave the house
  • Shaking your head in a belittling fashion when he comes home without the milk you asked him to get (even though you went to six shops today and still forgot it)
  • Sulking for days before he goes on a stag do/birthday party as a weekend away means you have to put out the bins (and touch them)
  • Hounding him about Christmas ideas in June
  • Casually leaving around holiday brochures in September
  • Telling him about your friend's new kitchen/living room curtains/toilet roll holder repeatedly
  • Doing that melt down thing every time you are about to have people over when the house morphs from a perfectly adequate abode to one that Kim and Aggie would refuse to enter
  • Mentioning something he said he'd do at the weekend 34578 times in the days leading up to it.
So you see. I am a dream of a wife. Bet he is so glad he married me.
Of course I am not that bad - I let him go to the gym and sometimes go out with his chums but only after he has made the bed, painted the house, put the bins out, mowed the grass, plastered the bathroom, grouted the tiles, stained the decking.....
Must go there is nagging to be done as he looks like he is about to sit down with a sandwich.


Friday, 18 April 2014

Word of the week: Hope


I don't look to the future very much anymore. I barely plan next week let alone next year. I can drive friends insane with my vagueness when meet ups or other engagements are attempted to be made. The family calendar is only flicked through if it needs to be.

Gabriel has taught us all to live in the here and now. And worry about tomorrow, well tomorrow.

It has to be that way when you have someone like this dude in your life - because he decided from day one that rulebooks were for losers. Conventional guidelines and typical milestones are just not his bag.

With no diagnosis, Gabe's future is wide open (or not) and everything can be achieved (or lost).

It is not worth dwelling on as who knows where any of us is headed. Instead we celebrate every little moment, every golden nugget of normal.

But in the past few weeks, something has been bubbling inside - gently stirring and energising us as a family.

There is hope.....

It started with some shadows of improvement on his growth hormone treatment - extra strength in his legs, more alertness, fresh motivation to move, all sprinkled with added defiance and cheekiness (but hey ho!). Then school commented on how much more chatting he is doing. Trying to converse with his baby babble and trying out new words. Every day working hard to make himself heard - the child who just sat passively amongst us is very much the centre of attention - making us laugh with his antics and testing our patience with his temper toddler tantrums.

Gabe says: "Now I am big and strong I can duff you up!"

Then we took him to Brainwave this week. This is a neuroplasticity programme that we fundraised for because it is expensive but worth every penny it seems. For two days you have an experienced physiotherapist and play/cognitive expert assess your child and come up with a holistic programme to gently nudge them forward.

To be honest it was just wonderful to have the two days to play with Gabe. Our other two children were still at school and then at a sleepover at their cousins' house. They were very well taken care of so it was guilt-free golden time with the youngest.

Everything he did in those two days was scrutinised by the experts, debated and then fed back to us. It turns out the complicated gorgeous boy is not so complicated afterall.

They had seen his kind before. These delayed divas who are in no rush - thank you missus.

Things were explained that kind of made sense if only we had thought about it before. Missing vital development steps when he was a baby, either because of his low muscle tone or illness, has left him plagued with sensory issues - from forgetting his hands belong to him to not putting anything in his mouth. All of which can be overcome with the right intervention.

In the same way, his body forgot how to instinctively get to the next step. As his peers got busy with their blink and you'll miss it development, he was spending quality time playing "guess my ailments" with doctors and nurses.

We have seen a lot of therapists in the past three years - some better than others - but mostly they like telling you what's wrong and pursing their lips when we tentatively ask about the future. Brainwave is different because they focus on the positive and are not afraid to look ahead.

"There is no reason not to expect normal movement one day.
But you are going to have to show him how."

These are words we thought we would never hear. That is not to say that we are being naive - of course it is obvious that there is some sort of learning or motor planning issue amid it all - but the potential to move normally at some point is a gift to cherish.

It is time for us to get busy with this new programme. Time for us to knuckle down and work hard. We need to coax him to the next steps. Then the steps after that. And after that again. No matter how long the road is. No matter how tired we get.

The journey back from Brainwave


Because right now it feels like we can do this.
Right now we are filled with hope.





The Reading Residence

Tuesday, 8 April 2014

Mummy amnesia

The arrival of my brand new son seven years ago was a shock to the system let me tell you. I was woefully mentally unprepared. My brother was getting married around my due date and our best friends two weeks later. I had brought two little smart outfits for both a girl and a boy baby and a wrap around affair for myself. I didn't care what people said. I was going to those weddings. No matter what. All the bases were covered. How hard could it be. Just you watch me. So there.

Yeah, yeah, you know how this goes. I didn't go to either of those weddings.

I didn't go anywhere for weeks. Towards the end of the husband's paternity leave we decided we must venture out with this child before he was able to drive his own car out of there. It took us an hour to pack a bag, make up milk, put the baby in the car seat, take a wailing baby out of car seat, put baby in car seat, take wailing baby out of car seat, feed baby, change baby, put wailing baby in car seat before we left the house. We headed up to the retail park at the top of our road congratulating ourselves on our awesomeness. You would think we'd mounted Everest.

Smugly we sat down for a brew in M&S with a trolley full of food and essentials beside us. We are so fab I thought as I looked for my purse. We are so stupendous the husband thought as he looked for his wallet. We are so screwed we both thought counting out pennies from pockets before disowning the trolley and heading back to the car in shame.

It didn't end there. This failing to remember stuff has just gotten worse over the years. I can't be alone in this bypassing of vital bits of information. This random forgetfulness. Not sure what I am talking about? I mean stuff like this:
  • Turning up to a doctor's appointment a week late
  • Going to the supermarket, spending enough to justify a remortgage but not buying any actual meals
  • Putting a dirty nappy bag in the fridge instead of the bin
  • Forgetting about the pasta bubbling away until the smoke alarm goes off
  • Spending ten minutes looking for your half eaten chocolate bar before realising you actually ate it
  • Calling all your children by the wrong names
  • Asking someone to mind your pram while you have a word with the teacher then leaving the school playground without the baby
  • Getting weekly texts from school asking for dinner money
  • Ringing your lost phone and hearing it in your pocket
  • Calling your mate for a chinwag and dialling your mum by mistake
  • Promising to pick up a neighbour's children from school and having to run back up the road like Lightening McQueen when you pass their house empty handed
  • Only remembering you are on a diet after you've stuffed two pieces of shortbread in your gob
  • "Sorry it's late" appearing in every birthday card you send
  • "Sorry I'm late" becoming your default greeting to friends
  • Friends wising up and telling you they are meeting up half an hour before they are actually meeting up
  • Feeding the baby, getting distracted and then going back twenty minutes later to a room splattered in orange mush like the lift scene in The Shining
  • Returning library books a year later
  • Leaving your coffee on the car roof as you strap in the baby and then driving off
  • Knowing you are arguing a good point with your husband but forgetting what it is. Damn
  • Pouring orange juice on the cereal
  • Misplacing that piece of paper you cleverly (not cleverly) listed all your passwords on
  • Discovering again how long play dough takes to clean up after the children have played with it for 3.4 minutes
  • Only remembering it is your turn to drive home from the family party after you have finished your wine (oh well in for a penny..)
  • Driving on auto pilot to the supermarket when you wanted to visit a friend who lives in the opposite direction
  • Starting and not finishing 9 conversations with your mate at play group
  • Forgetting what a poo in a nappy smells like when the husband is about the house.

There was supposed to be more on this list but erm.. I've forgotten to remember some of the things I reminded myself to remember about the things I often forget.

Gabe says: "Don't worry guys. I know it's getting dark but it's not been that long.
It has only been an hour. She's been longer than that before looking for the camera."


Brilliant blog posts on HonestMum.com


Sunday, 6 April 2014

Love letters to my heart

I think if I was to become famous I'd be one of those people that forget the loyal fans that get them there.
You know the type who nearly run over their followers as they hang around the stage door hoping for a glance.
I'd sweep past not daring to look at the lowly enthusiasts with my entourage and refuse to sign autographs as it involves touching ordinary people's pens. Gag!

The details of my fame are a moot point. It will probably involve either an X-factor or Strictly Come Dancing win seeing as I am fantastic at both singing and dancing. I am afterall a living example of the hiding your light under a bushel parable.

*sorry excuse me a second - just got to push this sniggering husband out of the room as he reads over my shoulder. He wouldn't know talent if it bit him on the bum. Humpf...*

Anyway soz I digress. The reason why I think I would be an insensitive superstar involves the husband man marching into the house the other morning holding aloft a pile of paper.

What are you doing?

Of course, a swarm of secrets swept through my brain. He's found my stash of shortbread when I'm supposed to be on a diet. Or worse he's found the credit card bill. Yikes!! I knew I should have stayed out of French Connection.

How can you?

What? What? Good god man spit it out. I didn't mean to wash your suit trousers the other day. It was an accident. I'm not even sure how they ended up in the dryer.

You can't recycle these!

Er.. phew. Is that all!



 
 

You see I get a lot of these. My two oldest children are always drawing me pictures or handing me messages. It is gorgeous and cute. And my husband (just this once) is right. These are precious and slivers of magical memories that shouldn't be sent off to be remade into toilet roll.

I now have a special box where I place all these little love notes and letters because in the blink of eyelid they will be no more. I have a feeling that I will open this box time and time again in the teenage years. I'm guessing I'll long for more of these prized memos as the only scripts of note will come via smart phone and involve lifts to parties and brief mentions of where they are headed to that day.

Then, I'll look back and remember a time when their love was so big and so consuming they wanted to tell me ten times a day.






Thursday, 3 April 2014

The wheelchair

Last month we picked up a wheelchair for our little boy. At 19kg it is like lifting a heavy suitcase, but one that keeps bursting open on you. With a house full of equipment and disability living aids, you'd think I'd just welcome this into the jam-packed fold. But no, I haven't.

You see I can't get to grips with this new addition. It feels massive (it is literally huge) and life changing. Why? It is just a chair. A specialised pram no less.

I've surprised myself that I feel this way. It is not denial. That ship has long sailed.
It's just that it feels a lot like admitting defeat and giving up.
This feels final. Like another door slammed shut.

Wheelchair. Wheelchair. Wheelchair.
It makes me sad.
And the reason is simple.
I don't want him to be in a wheelchair.
That is all.

This is one of the hardest posts I've written for a long time on this journey. I've started it so many times and shut it down quickly balking at the thought of penning the words as they sound spoilt, unfeeling and unconsidered. I know my initial thoughts are kneejerk and I will feel differently in a very short space of time.



The wheelchair.
You speak a thousand unspoken words about my boy that I never wanted said.

The wheelchair.
I see it as a badge. A banner over your head. Broken. Not quite right. Damaged.
I didn't want this for you.
I had hoped and prayed that it wouldn't be and longed for the future to be different.
I had wished we'd win the race and you'd get you on your feet long before this was your fate.

The wheelchair.
Despite all the hard work and physical therapy, the time has arrived.
Despite the months of waiting and long assessments, I am not ready for this.
Despite knowing it will protect your spine and your hips, it fills me with dread.
Despite not normally caring, I don't want you (us) standing out amongst the crowd.

The wheelchair.
My family and friends have been kind and sympathetic, sensing the internal struggle.
My newest pals in the same boat assure me this initial feeling will pass and I'll embrace this new stage.

The wheelchair.
It looks like for now you are here to stay.
It has surprised me how this one thing has left me slightly bitter and dejected.

The wheelchair.
Who would have thought we'd need our world to be access all areas.
Who knew this is where we were all headed.
Who can predict, who can say that just because a wheelchair is in our world today, that our hope has gone astray.
Who knows what lies ahead. We are not giving up. Not yet. No way.




Gabe says: "Relax mum. This is the life fandango snoozing in the sun.
I've got the best wheels in town."


*A few wheelchair users have stumbled across this post like Andrew Pulrang who writes the marvellous Disability Thinking blog. My intention in posting this was not to add to the sea of negative literature surrounding wheelchairs, but to highlight the journey of caring for a child who uses a wheelchair. A wheelchair was not what I hoped for when I envisioned Gabe's future but I know I will feel differently next week, next month and next year. When Gabriel has his own voice I am sure he will share his own thoughts on the matter. I thank people like Andrew for trying to change the landscape for disabled people and championing ableism. People like him will make the world a better place for people like my child.






Monday, 31 March 2014

Shamming under the spotlight

It was one of those moments.
You know the one.
Where you've had a huge quarrel with your man and you are winning the sulk stand-off (high five). Then you bump into someone you know and have to pretend you are hunky-dory with the person who has made you a hunk-of-fury.

We were in Pizza Hut at the weekend and I'm not even sure if the long-suffering husband even knew I was in a huff. But I was. Big time.
I pretended that the baby was getting on my nerves grabbing stuff off the table and whining, but really the villain of the piece was my oblivious spouse.

The crime was terrible. Worthy of mediation in the law courts. Nine little words.
What is the orange stuff all around your gob!!
In a nod to the sunny weather, I thought I'd alleviate the coffin look with a smidge of fake tan.
I'd pranced around for hours thinking I looked all golden and gorgeous. When in actual fact, according to the man I married, I'd just looked like I'd been a bit cavalier with the Wotsits.

My vanity was dented but I couldn't admit that. Nor could I get the Nutella effect off my face. So I did what any grown woman would do - I took my sh*t out on everyone else. Hey, if I was going down in a blaze of conceited misery, we all were.



Anyhows, there I was in all my tangerine glory tucking into my grub and growling at my family when another group sat beside us.
It wasn't just any Tom, Dick or Harry. Oh no!
It was someone from the husband's work.
Someone important from the husband's work.
Well that was the end of my fun. We'd now have to pretend to be normal.
So reluctantly rolling the McClaren hood back up off the baby (I'd been practising the out-of-sight out-of-mind method of drowning out his hollering), I plastered a big smile on my face.

Channelling my inner Stepfordness:
I chatted chitty chat to the man.
I coloured in a house with the girl.
I did a round of noughts and crosses with the boy.
I did some couchy coos with the baby.

And do you know what a strange thing happened. The prissy fit lifted and I started to enjoy myself. Soon it wasn't an act to impress. We were having fun. Who knew!

I had an epiphany. All I needed to have a perfect life and a perfect time was to be under someone's scrutiny. I just needed people to be sat in judgement on my incompetent, gauche, brattish ways, and then I'd have to up my game. It was so simple. So obvious. Why hadn't I thought of it before?

I needed to be the star of a documentary.

It was time to ring the BBC. This was going to be life-changing. This would mean:

My house would be immaculate at all times

If the film crews were in I'd have to keep on top of the blinkin' housework. Cushions would appear on beds (who cares if it takes you three hours to remove them before gong to sleep; just don't sleep wimp). The grot from behind the bathroom sink and the top of the fridge would all be eliminated. I'd finally strip and repaint the bedroom doors. There would be no cereal permanently dotted around the floors and toys would be artfully arranged in a manner that would repel small children. And obviously I'd need a little cleaning crew on expenses to help.

I would be immaculate at all times

There is no way I would be a fatty on the telly. I'd have to get in shape. It would also be imperative to rob the husband's credit card and kit myself out in White Company clothes (instead of three-year old Top Shop) and be all demure and eyebrow plucked. I'd prim and preen about the place flashing a pristine set of pins. My hair would be treated to a triple bill of actually being washed, dried and brushed. And I'd never wear yesterday's clothes (not that I ever do this anyway, honest).

We would have interesting witty debates

If people were watching, the husband and I would have to swot up on fascinating facts and be seen to be up to date with current affairs not just Kardashian craic. I'd be lounging around in the evening reading The Canterbury Tales instead of BlogLovin on my phone. No more banter about which are the best oven chips, instead we'll examine the economic consequence of the Network Rail investment and the merits of Babcock and Fluor's nuclear deal.

We would be super parents

I would be a therapy monster mum. I'd be flashing waxed underpits as I hot-housed the delayed one. With one hand I would help him simulate stepping and the other would be waving Makaton flash cards in his face. By jove, he'd be walking and talking by season two. The eldest ones wouldn't have a hope or a prayer. Where once it was CBBC and a biscuit post-school; Mandarin Chinese, oboe and water painting lessons would now await.
 
For sure, a TV company is going to want to commission a series on my life. Not the super noodling, ignoring the children while having a 5-day deadlock about opening the bedroom curtains one. No, the splendid on loop, round the clock impeccable and sublime one.

I am a utter genius. Must dash. Got to go and get the Yellow Pages out and look up documentary crews to make you look wonderful.

Adios obscure ones. Au Revoir unknowns. Addio non-famous folk. Auf Wiedersehen non-documented peeps.

See it's working already. I'll be speaking in tongues soon.


P.S. Anyone got any mates in the telly, give us a text.

    Gabe says: "So let me get this right. You won't pull this hood right over my face
    if I agree to dress like Lord Fauntleroy at all times."


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