The next chapter

I’m not really sure where to start with this post.  But I’ve wanted to write about something for a little while now, something that I think has been the cause of me feeling a little low for a few weeks.

This may end up being a rather self-indulgent post as I don’t intend to write about Tilly – I want to write about me.  Because I, Tilly’s mum/carer/part-time therapist/spokesperson/advocate, also have needs and issues that have become part and parcel of this different journey that we are feeling our way through.  I want to write this post because there might be some mums out there who are further down the road in their journey than I am who can provide some inspiration, motivation, encouragement to taking a leap on to my next path.  But also, to the mums out there who are where I was a few years ago, or who are feeling like I do now – lets share our stories so we know we’re not alone.  Lets encourage each other to have the courage to take a small step away from our roles as carers to rediscovering who we are and what we are good at outside of the realms of caring.

A little bit of background

Before I fell pregnant with Tilly, our first born, I had a decent job in Marketing.  In fact, I had just been given a promotion that I’d campaigned for and was feeling positive about the future of my career.  But my pregnancy wasn’t a straightforward one and was fraught with fear (we were told at our 12 week scan that something wasn’t ‘right’ with our baby, which led to numerous tests and resulted in us finding out that she had a heart defect) and pain (I suffered from symphysis pubis dysfunction, or ‘SPD’ from around 5 months –  walking hurt, climbing stairs hurt, standing, sitting, lying down, everything I did hurt).  My job suffered as I had to take time off for tests, and as the SPD pain worsened, I had to admit defeat and, at 6 months, was signed off work for the remainder of my pregnancy.

When Tilly was born, we were thrown into a world that we had no idea we were about to enter.  She was born at 10.30pm on 1st July 2009 – we were told before she was born that they would have to take her away as soon as she arrived to give her a good check, due to her heart defect.  We were in such a state of delirium & exhaustion that when she was born, we didn’t even notice that she wasn’t breathing – it wasn’t until around 4 weeks after her birth we noticed on a letter from the Consultant Paediatrician to Genetics that she had to be resuscitated.

The next day was the day that the future we had dreamt of having with our baby girl was turned upside down.  A consultant pulled us into a small, dingy side room (well, eventually he did – the delivery of his bad news began in the ward during a very busy visiting time until he realised that perhaps it wasn’t the best place to break bad news to new parents!!!).  He proceeded to tell us that he didn’t know what it was, but he felt that there was something seriously wrong with our baby.  He talked about her heart defect, her talipes (club feet), dysmorphic features (I still hate that word but basically it means features that are abnormal from a typical baby) and how he felt there was something wrong with her genetically.  We were utterly devastated, and the scarring from that day hasn’t healed – at a time when new parents are bursting with pride and excitement, when hormones are all over the place and exhaustion from the previous 36 hours has set in, the way in which this doctor broke the news to us still makes me angry, sad.  In fact a whole range of emotions that I wish I didn’t have to feel.  He completely destroyed a time that new parents should relish.  And sadly, what followed over the next few years was a journey of fear, suspicion, sadness and worry.

I could write a novel about that time of our lives but thats not what I want this post to be about – maybe I’ll write more about it some day!

This is about how what happened next, led to my career being abandoned.

But not immediately.  I did return to work when Tilly was around 14 months old, and although I tried hard to focus on my role, I had to take a significant amount of time off for hospital appointments and illnesses (she caught every little virus going in those early years).   After a few months, I then decided to take some unpaid leave to focus on Tilly’s development – she was still very behind on milestones, still being tested to find out what the bigger picture was, and I felt an immense amount of guilt going to work and leaving her.  I was her mum, I should be at home doing everything I could to help her develop.

After a couple of months of being at home with her, I discovered that I was pregnant again – a complete surprise as at that time, we didn’t think we wanted to have another child.  But sometimes, I believe, things are meant to happen.  And that ‘thing’ was Tilly’s wonderful little brother, Elliot.  He was born without any heart defect, any abnormal features – he was a healthy, hungry baby boy.  And he allowed us to experience that new parent feeling in hospital that we always felt we missed out on with Tilly.  But it was bittersweet as it amplified how awful the experience with the paediatrician was.

Anyway, fast forward to Elliot’s 1st birthday.  I had planned to return to work after his 1st birthday because it was what I always expected that I would do after having a family.  Since leaving school, I had worked and didn’t expect that having children would put a halt on my career.  However, several changes had happened in the department I worked for and I was called into a meeting to discuss my role.  I was told that I wouldn’t be returning to my previous Marketing Communications job that I’d worked so hard for but I was being offered a role similar to one I had done at the start of my career 10 years previously.  I felt betrayed, angry, discriminated against and went straight to the union rep to discuss my options.  To cut a long story short, I was offered voluntary redundancy .  As they refused to give me my old job back , I took the redundancy and walked away from the career I’d had for 10+ years to focus on raising my children, and became full-time carer to Tilly.

And here we are now…

Tilly is now 7 years old, in mainstream school 5 days a week, settled and happy.  For the first time since before I was pregnant, I feel that I can start stepping back from my role as carer for a few hours each week – and perhaps I can get myself some work again!  The extra money would certainly be good.

But I’m stuck, I don’t know where to turn next.  I’m not sure what type of employee I’d now be – my eyes have been opened to a different way of life, to a life that has more meaning than the one I’d lived before Tilly & Elliot came along .  I don’t think I’d tolerate the ‘office politics’ that were such a big part of my previous job; I would need time off for hospital visits and appointments; and I would need a large degree of flexibility to allow me to continue with caring for Tilly outside of school.  It’s easier with Elliot – he would easily cope with breakfast clubs, after school clubs, holiday clubs, playdates with friends, sleepovers etc if I had to be at work.  But with Tilly, that isn’t an option.  I would have to find specific care for her, and sadly, that just isn’t available where we live.

Whereas many of my counterparts have been able to return to work, I’ve found it difficult because Tilly’s needs were and will continue to be greater than children her own age, or significantly younger – Elliot, at age 4, is already way more independent than his sister.  I feel I’ve been left behind and am scrambling to catch up.

I’m now in my forties (early!), my confidence has dipped, my CV isn’t as good as it used to be and I’m still a carer to my daughter with additional needs.  But I want to be more than her carer, she deserves more than that, as does Elliot, so I’ve got some more avenues to explore.  I’m sure that there must be something out there, something I can do for myself – I’ll just have to keep looking so that I can start the next chapter of my own journey.

If you are reading this and any of it resonates with you, please get in touch, I would love to hear from you.




Gone to the beach

We went to a fantastic birthday party on the beach this morning.  It was Tilly’s little brother’s friends’ 4th birthday, so what better place to have a birthday party during the summer holidays when you live on the coast!  I don’t know why none of us have come up with the idea before now??!!  All the kids loved it – Tilly’s brother was in his element; searching for treasure, pulling hard at tug’o’war, paddling in rock pools, toasting marshmallows on an open fire and, to top it off, eating chips!  He had the best time.


I had planned to take him to the party by himself, and leave Tilly with Granny as I knew it would be slightly easier for me.  Up until recently, beaches were somewhere that completely threw Tilly off balance.  The soft, uneven sand was too much for her brain to cope with; her vestibular sense tested to the limit.  We take it for granted that our brain can process how to walk on sand – it instinctively plans the movements our legs, arms, torso, head and shoulders have to make to keep us upright and balanced.  The sensation of the sand on our feet can be strange at first but our brains quickly process the texture and how it feels so that we can accept the new texture and continue walking or standing in it with ease.  Not so easy if you suffer from Sensory Processing Disorder (SPD), as Tilly does.

But at the last minute, as we were getting ready to leave the house and when I watched her excitedly walk out to the car with her brother, probably thinking we were going off on an adventure (I’ve been trying hard this summer!), I changed my mind and took her with me.

It started off well because as soon as her little feet hit the sand, she was off!  Strutting along the beach with the biggest smile on her face.  I couldn’t believe she was actually walking so freely on sand, yay!!  Albeit, she did walk through a puddle along the way and her socks and shoes got soaked but thats part of the fun isn’t it!  She continued to make her way to the large rock pool all the other kids were gathered around, and I quickly removed her shoes and leggings so she could enjoy paddling.  I set up our picnic blanket and chatted to my friends, feeling quite pleased with myself for changing my decision at the last minute and thinking that perhaps Tilly was going to enjoy herself on the beach for a change and that I would too.


It wasn’t long before Tilly’s paddling turned into full on bathing – she sat herself down in the rock pool and splashed away.  Her favourite thing to do at home is splash and pour water over herself in the bath so she was in her element.  But that was when I could feel myself getting tense.  The fun and socialising aspect of Tilly’s visit to the beach was over – it had been replaced by sensory seeking behaviour which I knew could quickly change from enjoyment to frustration on her part.  From the outside, or to someone who doesn’t know her very well, it looked like she was having a ball.  And it started off that way.  But as soon as I saw her expression change to a serious one, her splashing become more frantic and her body shivering from the cold, I had to take her away from the pool.  Sadly, she doesn’t (yet?) have the ability to recognise the sensory signals that what she is feeling is no longer enjoyment but irritation, frustration and cold.

I got her dried off, gave her a snack and the second shock of the day was that she actually stayed sitting on the picnic blanket with me.  I was convinced she’d be off scuttling back to the pool as soon as I let go off her!  I began to relax a little again – until she started playing with the sand.

Sand is another big sensory ‘thing’ for Tilly.  I say ‘thing’ because, like water, it can give her a lot of enjoyment – but, it can quite quickly become too distressing for the sensory processing part of her brain to cope with.  So I’m not too sure how to describe it!  Again, I have to watch her intently to spot when the enjoyment switches to frustration…which brings an end to my relaxing time.

Unfortunately the switch flicked a little earlier than I was prepared for so the result was a little girl with no form of communication who was suffering from sensory overload.  She was covered head to toe in the sand that she had been loving playing with one minute, to suddenly hating the feeling of every single grain of the disgusting texture that was stuck to her skin, in her hair, down her nappy.  Her sensory seeking behaviour suddenly changed to sensory avoidance and the happy walking on sand I’d witnessed when we first arrived was replaced with her refusing to walk and me having to carry her.  There was nothing I could do but get her home and in the bath.

We are quite lucky in that Tilly’s ‘sensory overload’ results in moans and whimpers rather than a full-on meltdown, but it still breaks my heart to watch her struggle with feeling uncomfortable, unsettled and unhappy after an activity that many neuro-typical children (her brother included) love and are able to enjoy as part of a social gathering.  For Tilly, the sensory input the beach provides is overwhelming and overstimulating to the point that she has no interest in the social aspect of being at a beach party with lots of other children.

Its another hill we have to climb on this journey of ours.  We have to find a way of combining the sensory input the beach provides with the social enjoyment of being around others so that family trips to the beach can be a fun and relaxed activity rather than the tumultuous affair it has been to this point.

Perhaps there is someone out there reading our story who has some experience to share or advice they can give?  We’d love to hear from you.

In the meantime, I think little & often is key.  But regardless of how today went, I’m still glad I was brave enough to take Tilly.  Elliot and his friends had an absolute ball and thanks to fantastic hosts, he hardly gave me a second glance so he was completely unaware of the attention I had to give to his sister (again).