I am a mum blogger redefining motherhood

That’s what Mother & Baby magazine says, anyway!

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Before I became a stay-at-home mum/carer, I worked in magazines for 11 years. I edited more than I wrote, but I still get a thrill to see my words on the page, knowing (hoping) people will read them. And obviously, I think the pic of Ted is the cutest in the whole mag.

You can read the piece in the October issue (out now) and check out this piece on the Mother & Baby website for more tips on how to be a successful mum blogger.

The upside to having a child who’s a terrible sleeper…

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Is all those extra cuddles. Granted, I’d prefer they didn’t occur at 11.30pm. And again at 1am. And 2am and 3.30am and 4.15am. And all the other many many times Ted wakes up in the night. But just lately, sitting in the dark of his bedroom, with his warm little body curled into my chest, listening to the snuffling noises and holding him tight, I’ve had some beautiful moments.

It’s not every time. Some nights I could cheerfully turn off the monitor and decamp to the furthest reaches of the house where I won’t hear him cry. I’d sleep in the kitchen if it meant a full eight hours.

That’s just a tired mum’s fantasy though. It would never happen.

When I can set aside the tiredness, the frustration of caring for a nonverbal child who can’t tell me why he keeps waking and the jealousy that Rik is slumbering peacefully without us, I sit there, letting my breath fall into a rhythm with my precious boy’s and am filled with so much peace and such immense love for Ted.

Rik and I been talking about having another baby for a while now. It was always the plan to have more and I think it would go a long way to healing some of the hurt that Ted’s birth brought us.

I want to try again, I really do, but I realise now that for a while I’ve been holding back. Understandably, I have a lot of fear and trepidation over what might happen.

What if something goes wrong again? Birth is dangerous – Ted is living proof of that – and what about genetics? There are so many things that could go a bit haywire. Missing chromosomes. Extra chromosomes. And all the rest…

What if I can’t handle a typical child? What if many of the difficulties I’ve had adjusting to life as Ted’s mum aren’t about brain injury or disability? What if they are about me just not being cut out to be a mum?

These are some of the often irrational fears and feelings that bubble away. They are mostly ignored but they are there. Weirdly, they don’t bother me half as much as the fear of change.

Knowing that I won’t be able to devote myself to Ted as much is hard. I used to want to run away from him, from our life. Now I just want to sit in the dark and snuggle with him forever. Even the thought that a baby bump would get in the way of this saddens me.

So we will try for a second child and I hope we will successfully expand our family. I’m turning 37 tomorrow so I also hope it will be sooner rather than later!

Until then, I will keep savouring* these stolen moments with my beautiful first-born.

*That’s easy for me to say at 10.30pm as I rub my cheek on his head. By 4am I expect I’ll be swearing and trying to work out how much we’d need to fundraise to employ a night nurse

This time last week….

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…I was still green after doing a 5K to raise money for Ted. It was at the very glam (ahem) Bath & West Showground in Shepton Mallet.

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Obligatory post-race selfie

 

Color Me Rad is not the kind race where you aim for a personal best – or even bother timing yourself. In fact, I even missed our allotted start time (very embarrassing) as the roads were bumper-to-bumper with race participants and Shepton Flea Market visitors. But it didn’t matter. You set your own pace and basically try to get as covered in colour as possible. At each kilometre marker there are people who throw coloured powder or squirt coloured liquid at you (hence the enduring Incredible Hulk look I was sporting for all of last Sunday).

It’s the most fun I’ve had running for a while and the best part is we raised over £1,200 for Ted. I’ll say it again: £1,200! For a 5K!

Huge thanks to all who ran – Laura, Paul, Lee, Nic, Michelle and co – and all who donated (several of whom have supported us many times before. Love you guys). That whopping total goes towards vital treatment for our young scamp and for his super-duper new buggy, which we have almost chosen.

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The extra costs of being disabled

Scope, the disability charity, is running an interesting campaign at the moment about the extra costs of being disabled. Its online quiz ‘The price is wrong’ is quite the eye-opener. 

We’re not quite in the realms of having to buy a wheelchair that’s more expensive than an Audi, but I know first-hand how expensive special needs equipment can be. We’re looking at buggies for Ted at the moment and some of the quotes are eye-watering.

Obviously a lot of this is down to the engineering that goes into some of the more specialist equipment, but knowing the reasons doesn’t change the price tag. Unfortunately Ted’s needs are complex and severe so he needs the maximum support from a chair.

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Ted using one of the least expensive special needs aids – a Go-To seat from Firefly, a mere snip at £120 ish

At the moment, he’s in a high street Maclaren, which he loves, but his posture is appalling and we can’t go on with it much longer. Bad posture means the risk of future complications. He needs his hips and pelvis to be held in position and he slumps worryingly in the buggy giving me fears over scoliosis. If his spine starts curving, that affects his lungs and puts him at greater risk of chest infections and pneumonia. And – fact of the day – I was once told that pneumonia is the biggest killer of kids with CP. Scary but true.

At our visit to Wheelchair Services, they showed us the ONE buggy that they provide for Ted’s age/size. Not only was it built like a tank, it looked every inch the ugly, one-size-fits-all NHS equipment. Crucially though, it didn’t work for Ted. One size won’t fit all because disability doesn’t work like that.

Lovely as the lady doing our appointment was, there were no options that suited Ted. That’s OK, I was expecting it. Judging from the forums I’m on, not many people are suited to the free equipment offered. My OT had also warned me that you can get a voucher towards the cost of a suitable chair. We were offered £1,400 which should cover 20-50% of the cost of a chair. Eeep!

So I’m fundraising again to help Ted get the chair he needs. I’m not doing anything big but I am taking part in a 5K Color Me Rad race, with a bunch of other lovely friends and friends of friends. That distance is about all I’m up to at the moment. Training for anything more would be impossible but I’m proud to put my trainers on for Ted and help get him what he needs. After all, that’s a mum’s job.

Donate to our page (if you feel so inclined) here or come down and cheer us on (and get a cuddle from Ted) on Sunday 31st August at the Bath & West Showground Shepton Mallett 

It’s amazing the things you forget…

Photo 16-10-2012 13 22 38I think it’s safe to say that everyone – men, women, parents and non-parents alike – knows that there are certain things you forget about the early days of having a baby. The pain of battered and bruised bits, or C-section scar, the cracked nipples, the leaking boobs, the zombie-like state that you exist in thanks to never getting more than 45 minutes sleep in a row. Nature makes you forget all this or no one would ever have a second child.

When your birth, and/or the aftermath, is traumatic, there’s a lot more that isn’t so easily forgotten, but even that trauma fades in time – and not always as slowly as you might think. I’ve connected with a couple of people recently (thanks to Facebook) who have really brought that home to me.

Mum and Ted in SCBU

A friend of a friend is sadly going through a very similar experience to the one we found ourselves in. A lack of oxygen at the birth, cooling therapy, a lengthy NICU stay, a fairly negative-looking MRI followed by a not-so-great prognosis, feeding difficulties… The list is pretty lengthy.

The dad in question got in touch to ask some advice about therapies and fundraising. Their son is still in hospital but they want to make a start on healing him right now. And who can blame them? I am always happy to waffle at length about therapies so he came to the right person, but we also ended up bonding over what it means to have a baby in NICU.

While parts of those four weeks are still fresh in my mind, there was so much I’d forgotten and that surprised me. I have healed and moved on from the rollercoaster of those very early days where you live day to day, hour to hour, moment to moment, not sure whether your little bundle will learn to breathe on his own, or have seizures, or stop having seizures. Whether there will be permanent damage after some of his organs failed, or whether you will ever take him home.

Then things look up. He’s breathing! His seizures have stopped! He’s out of NICU and onto HDU (High dependency unit). Then he’s in SCBU (special care) and he’s moving rapidly up the corridor towards the final room. Where it all comes to a bit of a standstill. The gains he has made in taking the bottle plateau. He’s unhappy at night so they sedate him so he sleeps all day and you can’t rouse him to feed. You express milk, he sleeps, you pump some more, he sleeps some more.

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Your allotted time for feeding and changing rolls round. You can’t quite believe that you have to think about nappy changes and feeds in such a regimented manner – every four hours, on the half hour in our case – the nurse nudges you to change his nappy while she measures out his milk to be warmed. You have to play by their rules and you don’t feel you own that baby. It’s like he’s not yours and he won’t be until you get him home. And to get him home, he has to feed, but he’s not feeding because he’s too sleepy and he’s too sleepy because he had that choral hydrate last night but he needed the choral hydrate because the nurses couldn’t cope with his crying and the cycle rolls on. Until you put your foot down and ask to bring him home with that damn NG tube. And then a whole other set of dramas unfolds!

That all, thankfully, seems like a bad dream and a lifetime away now. Ted is nearing two years old and we are in our own little rhythm. It’s not like your average family, but we are coping and we are growing and changing and thriving. The sadness and the fear rise up sometimes but we also have joy and fun and happiness.

We must be OK because we’re talking about trying for another baby…

What a difference a year makes…

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My last post was a bit downbeat so I always feel it’s good to redress the balance with a little positivity.

This time last summer we spent a lot of time in Pinner with my in-laws. If you don’t know Pinner, it’s a leafy London suburb filled with swathes of 1930s houses. Lots of dreamy Metroland property to swoon over. Not a bad place for respite, and respite was exactly what our visits were.

Despite being a long, hot summer and all the joys that brings, I remember it being a time of great sadness and loneliness. The mood of my previous post pretty much defined my life back then and I needed a place to come and be looked after, a break from the endless appointments and questions, from the worry, from the feeling that your child is failing and falling behind in every way and missing every milestone and how that is all very far from OK.

But with the help of family and friends, and crying and talking and escaping, we got through it. And now, a year on, we returned for a visit, and I could see a huge difference in us both.

The few days we spent there last week were scorchers! Wiltshire’s weather has been warm and pleasant lately but I’d forgotten just how roasting London can be.

So what do you do with a small boy on a sweltering day? Relax in the shady garden? Swim? Splash in the nearest river? Or take a Tube for an hour into Central London to have lunch with your old work chums, followed by a trip to your hairdresser in Brixton and a Tube ride home on the cusp of rush hour? Yep, we went for that last one.

Maybe not the most sensible/enjoyable way for the pair of us to spend a day, but Ted was fantastic – he was brilliant on the Tube (he used to scream the whole way), loved it when a whole office of ladies crowded round for a coo and a cuddle, slept in the restaurant, watched the iPad at the hairdressers and only grizzled near the end of the return journey.

That, people, is progression. And it’s sort of progress that means more to me than meeting milestones right now. Calmer behaviour means we have the possibility to do ‘normal’ things.

I used to feel fearful of public transport because it was so unpleasant with Ted. He would cry the whole time in the sling or the pram and commuters would tut and frown. And almost every time, people would try to tell me what was wrong with him. They all thought they knew best.

No, he doesn’t want a drink, he’s just had one and no, the tongue thrusting isn’t thirst, it’s a brain injury; no he doesn’t want a snack, he can’t eat yet; no, being able to see out of the window won’t make any difference because he Just. Hates. The. Bus. I see why they tried to help. If the old me saw us on the way home today, I would have been thinking, ‘I’m sure that little boy would happier if she just gave him a toy or a book. No wonder he’s crying, he’s clearly bored. Can’t she see it?’ While it may be true that he’s bored, I know Ted playing with a book or a toy in his buggy is outside the realms of possibility for now. He is almost two but lacks the motor skills to be able to play and amuse himself. It was a good reminder to me to fight the instinct to judge – you may think you can read a situation, but you can’t. Help is often appreciated but not when it’s offered purely because you think you know best.

Ted’s ability to handle noise and crowds also seems to also be improving slowly. And now I know he can cope with more, I am more relaxed too. It’s opening up a new, more inclusive world to us. Where before I would feel cut off from many experiences, now at least some things are possible and I am less fearful and more inclined to give it a go.

Now, if only he would improve in the car…

Not-so fun in the sun

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After a few weeks of intense home therapy, we took a day off for a little jaunt to the beach. We headed to Weymouth to make the most of the sun with gran and grandad.

The weather was great but it ended up being quite a stressful day. The new Maxi-Cosi Axiss car seat that I bought for grandad’s car was an unmitigated disaster. It’s an off-the-shelf one (so costs less than £200 rather than the £900 that many special needs ones are) used by many SN parents because it swivels to make it easier to get uncooperative little bodies into the car.

Not sure if I’ve mentioned this before but Ted is very challenging in the car. I had high hopes for this seat though. Maybe this would change everything! In a word: no.

Ted HATED it, He screamed blue murder, extended loads, rubbed his legs on the seat’s (not very soft) material till they were sore, cried his saddest, most pained cry and was generally very unimpressed.

We chose Weymouth as there’s a good flat promenade but the walk was a bit windy for Ted who grizzled throughout, then he pretty much refused his lunch. All small things but it was a tough day for me. I’ve realised that doing new things, like having a day at the beach, brings up new challenges and old emotions. It was hard not to feel a bit stressed and broken and worn down by the fact that often everything is a challenge (especially when you don’t have an iPad to hand as a distraction tool).

The final straw was watching my dad carry my beautiful little boy down to the sea to dip his toes in the sea. I suddenly felt so sad for Ted and was overcome by how limited his little life is and how small his world can be. How robbed he has been of the simplest life experiences.

He should be sitting on the beach playing with the stones, toddling down to the shore for a paddle, splashing and exploring and screeching with joy as kids do on a beach.

Instead he is completely dependent on others to help him and amuse him and even then I felt we failed him as he really didn’t seem to be having much fun.

My mum says that he doesn’t know any different, but that’s cold comfort. Maybe I’m not sad for him after all. I’m sad for myself. I wanted to see my boy do these ordinary, boring, everyday things. To see him eat lunch in a cafe, to sit contentedly for a few minutes somewhere – anywhere, to turn the pages of his own book, to touch the stones on the beach and marvel at their millions of different shapes and sizes, to feel the waves lapping over his feet as he stands on the shore line. I can honestly say I don’t know if he will ever achieve these tiny dreams I have for him. And that is one of the saddest things I can think of right now.

The Ted fund is ONE!

You play many roles as a special needs parent. As well as the usual daughter, wife, friend, auntie, mother types, you become an advocate, an adviser, a therapist – and, in cases like ours, a fundraiser too.

Talking about money is very un-British, let alone asking people for it to help take care of your child. But we realised early on, if we want Ted to have the specialist care he needs, we have to do this.

Thankfully, people love to help.  We have been amassing our Ted fund for a year now: 26th February 2013 was the date of our first donation via the fabulous Tree of Hope.

In that time people have given their money, advice, time, items for auction and help in spreading the word. They have run races, put themselves through crazy training regimes, baked cakes, sold clothes and beauty products, hosted parties and club nights and done all kinds of amazing, heartwarming things that have made such a difference to Ted and make us all feel extremely special and loved.

So one year on, I am pleased to announce that the Ted Fund on Tree of Hope has reached a staggering £37,183.22. Grateful doesn’t even begin to describe how we feel. We are thankful, staggered, humbled and proud.

While we are taking a bit of a backseat in our hassling you for money fundraising, others are still going strong. Like a friend from school who is doing a 10K endurance race for us even though I haven’t seen him for TEN YEARS. (You can support Craig here if you feel that way inclined.) Now that’s the kind of thing that puts the special into ‘special needs’.

The one where Ted has surgery

If you follow us on Facebook (www.facebook.com/TreatmentForTed) you’ll have noticed that Ted had surgery on his wonky eyes two weeks ago. It was quite an experience!

Post op poorly bubs

Post op poorly baby

He was brilliant in the hospital, and totally won the heart of Jacob, the nurse who was looking after us, with his smiles. It broke my heart to put him under and leave him but it had to be done. He was properly wailing and crying blood when we met him in recovery (eeek!) but we had lots of sleeps and cuddles afterwards in the ward.

Unsurprisingly he was quite upset after the surgery and we had to stay until 10pm before he was OK to leave. That was mainly waiting till he had a wee – which is one of the post-op requirements, apparently. But once at home it was a different story – he puked down Rik several times and was totally off his food for a week.

But after a load of homeopathy, some cranial osteopathy to ease his hard liver (!) and some probiotics to help his tummy, Ted is back on form. With straighter eyes.

Here’s how he looked before (taken in November)

See how his left eye really turns in?

See how his left eye really turns in?

And here he is now (taken on Saturday)

Straight (ish) eyes!

Straight (ish) eyes!