Not only was I lucky enough to get to attend a workshop/presentation about 24 hour postural care… but I also attended the Kidz To Adultz event at Event City in Manchester.

The whole thing kind of filled me with mixed emotions. My relationship with equipment now is somewhat different to how it used to be.

Each new piece of equipment hauled into our home was a stark reminder of the severity of Amy’s disability and postural care needs.

These days I actively seek out new ways to vary her positions and keep her secure.

It is almost exciting getting a new piece of equipment, especially when it has for example a good tray table or a really effective head support.

From the professionals involved in Amy’s care I always seek out answers – they have seen children with movements like Amy’s for decades, for me their expertise fills me with confidence and I aspire to make them proud in trying to do all of the exercises and therapy we need to do.

I remember when we first got a standing frame and I thought it was to help her learn to stand!

How far I have come since then –  I know now that it is to keep bone density, strengthen muscles, and to maintain good posture (not to mention help with motility issues!)

Before last week I hadn’t realised how important posture throughout the night is.

I know from experience that sleeping on my tummy gives me a bad neck and back.

However if Amy were to sleep that way she wouldn’t be able to counteract it or think to move to a different position.

I learned about scoliosis and hip displacement – things I live in fear of with Amy.

Amy has a lot of dystonic (involuntary) movements and literally does not ever stop moving.

When she experiences a heightened emotion these movements are further exaggerated and can set of a pattern of movements she cannot control.

This can result in pain, frustration, feeling insecure and unstable.

It does upset me a lot sometimes that she isn’t able to just relax and be still like we would; however we play the cards we are dealt and must pro-actively seek out ways to help lessen the possible negative effects.

So it has resulted in Amy being assessed for a sleep system.

It is basically a big sheet on the bed and you slide in foam wedges to ensure her back and legs are straight.

There is also this contraption that looks a bit like medieval stocks that holds her legs straight.

I am told to absolutely not expect this to be tolerated but that if we even managed one hour per night of her in this good posture then it is better than no hours and that hopefully we can build up the time spent in the system.

Personally I am dreading it, but if eventually tolerated it will be like 12 hours physiotherapy for free with no effort from anyone.

We also got told this month that we have an orthotics referral. Amy’s hips are slightly asymmetrical now as she mainly rolls onto the same side and this is actually making one rib go in a little.

So we get to join in the other special needs parents in the battle to find nice shoes that fit well with splints!

We are also getting some gators to help Amy’s knees not buckle when we do our bench standing at home and are also increasing her time spent in her standing frame.

The standing frame is a hated item in our household and even getting five minutes in it can be a battle!

One of our specialists said to me the other day, “You have so much equipment and so much you have to do that you don’t actually realise how much you have learned and how far you come”.

She was referring to the transition into the standing frame, or the assembling of the wheelchair and so on.

To onlookers it looks so impressive in some ways, but to us it is just normality and with each new exercise or piece of equipment we must know why we are doing this, and how to do it most effectively.

It was a nice pat on my back because sometimes all of this physio is daunting and overwhelming.

The event we went to was incredible.

I saw how technology is working hard to make our lives easier.

I loved seeing the new Firefly Splashy and absolutely cannot wait to order one.

Not only will it be amazing in the bath, we can use it in the paddling pool in summer too!

I also loved the switch powered wheelchairs, the bath lifts and so much.

We bought a wheelchair blanket that is fleecy and waterproof… I am so excited to use it as I have been really struggling to fit a cosy toes to her wheelchair and she kicks blankets off.

So this is perfect.

The only missing part of the puzzle for us now is a house that can fit in everything we need.

We are yet to get hoists and bath lifts and so on as our house isn’t adaptable.

I can’t wait to hopefully live in a bungalow one day and be able to save our backs and Amy’s hips and spine!

Since then, my obsessive little mind has looped this over and over in my head and forced me to apply it to many scenarios relevant to our situation.

For example, not looking at a child the same age as mine who happens to be neurologically typical and playing the ‘This is how it would have been’ game.

This is not conducive to positive thoughts and as soon as my mind starts to do the whole ‘Wow, that child is saying words’ ‘Wow that child is toilet trained’ and so on I tell myself ‘NO’.

I also try not to start thinking of silly cliches some professionals throw out there like ‘inchstones not milestones’ and so on.

But sometimes it is really hard not to compare.

It can be damaging, it is not productive, it changes nothing.

Lately all I seem to be able to do is compare Amy’s childhood to mine.

From a young age I remember loving picking blackberries with my grandma, watching films and cuddling up with my mum and dad, eating tasty meals around the table and making deals on how much more I had to eat before I could have a dessert.

It does upset me thinking I can’t just ‘set her free’ on a park to run round and explore.

In a lot of ways I have tried to become more like my younger, more fun self to help show her to be inquisitive and explore.

But it’s about finding a way to make her childhood memorable, and in a good way.

Not peppered with frustration, tantrums, therapies, physical pain and so on.

I want her to know how important her happiness is to us.

It is literally my reason for being, my calling in life now.

We have spent a lot of time lately visiting soft play centres. We have entered a phase in Amy’s development whereby we cannot stay in any one place for a very long time at all.

I voiced this as a concern at today’s neurology appointment and was assured that this is due to short attention span and various other things.

It would seem there is no way to medicate these irritable tantrums that occur after the toy she so previously loved, has after 10 seconds…become absolutely unbearable and must vanish from sight instantly.

We did however get a prescription for some other medications which we will help with movement issues and thus hopefully end the self perpetuating problem of anger turning into uncontrolled movements and this causing further distress.

Anyway, I digress.

The reason for the soft play centre visits (and also countless garden centre or supermarket visits) is that they are a really big place, there is a lot to see and lots of different areas to go to before we have to leave and calm down in the car.

The first time I went I got there a lot earlier than my friend who had got held up in traffic.

Eager to not go in the sensory room until my friend arrived, I cautiously paced around the venue trying to familiarise myself with things Amy might entertain.

I found an area that said “toddlers 0-3” and I thought “ah yes, 2 years 9 months. Perfect age range for us. Yep let’s go and see.”

I disconnected her pump feed, unfastened her from her wheelchair.

She instantly extends and slides out of the seat. I anticipate this and catch her.

She is stiff like a plank of wood. I jiggle her gently and sing to calm her down.

Constant music is needed or she gets dystonic and sad.

I sang the right song… she loosened up and could now take in her surroundings.

I entered toddlerland with difficulty, opening the gate, unable to see if there were any children at my feet, my child casually squeezing at my eyeball… the usual.

My heart started to race as I started to realise that literally NOTHING in this room was suitable for her.

Feeling a bit alone and overwhelmed I felt myself get all hot. “Don’t cry” I kept telling myself.

How silly I am at times.

The other parents started to look at me as if to say “Why is she just stood there holding her child? Why doesn’t she do something?”

I could feel them all trying to predict my next move. Overwhelmed I made for the gate and left toddlerland.

Feeling deflated I made my way for the table and chairs. Carrying Amy and dragging the wheelchair behind me I made a hasty retreat.

I would sit and hold her and sing to her until my friend arrives and then we can all hide in the sensory room and feel normal again.

Sitting at the table did not go down well with Amy who had by this point clearly seen the other children going on slides and running round.

I decided to hell with it, I will go to the sensory room.

Just as I went to stand up a member of staff approached me. “We actually have a sensory room over there… she might like it?”

It was then that I realised we had stood out like sore thumbs.

The staff member had seen me pacing around confused and panicked trying to find a place to fit in and for Amy to be happy in.

I was both grateful and mortified in equal measure.

It was very kind of her to notice that our trip to this place wasn’t going to be like it was for most other people there. She had figured this out and looked for a way to make this a pleasant experience.

The rest of the day went well. Amy loved the lights. (Only with toys playing music and with me bouncing her around etc… a sensory room is a treat but not without noise for her!)

We have since re-visited several times, even just to pass an hour or so.

We went to a bigger one recently and it was incredible. She had an amazing time.

Admittedly it is a struggle…I turn into the militant special needs mum who wants her child to access what everyone else does.

I get her on slides, in high up ball pits – the lot.

This time next year that may not be an option, so I have to do it all now so I know I have done my best. I just hope she has the cognition to understand mummy WANTS to do these things, but sometimes can’t.

It isn’t anyone’s fault. She’s just a big heavy girl and constant in her demands!

It is completely worth it for that smile of hers. Anyone who meets her is totally entranced by her amazing smile.

I sincerely hope that one day places like this set aside more consideration for children like ours.

Why not have slides with a hoisting system so they can be lifted to the top? I know there are some places out there but they are either too expensive or too far away.

I recently found out a local park has a wheelchair roundabout and I can’t wait to visit and see what she thinks.

Right now it is between GJ button or OGD surgery and so on.

A lot of huge decisions, a lot of trial and error, a lot of wait and see, a lot of sleepless nights.

Building a den and hiding in it is no longer an option. Nor is being lay face down on my bed shunning the world around me.

I am an adult now. A responsible, determined, fuddled adult.

Instead I turn to others like me, I take to forums, I take to consulting friends, I take to reading medical journals and so on.

Our biggest issue right now is housing. I am sure you can relate. You see, we bought our house a few years ago when I was pregnant with Amy. We moved back in with our parents and saved frantically stashing away our pennies like squirrels harvesting acorns.

Finally we did it. We had a 10% deposit for a small two bed terraced house, it was to be perfect for our little girl. NOT.

Fast forward almost three years and the stairs are becoming a back breaking and dangerous mission and our wheelchair doesn’t fit into our house anymore.

Navigating through our equipment ridden house is reminiscent of a scene from star wars, dodging enemy wheels and benching, souring past forts of tube feeding supplies.

So the wheelchair stays in the car and we carry Amy to our house.

Her dystonic, sudden and unpredictable movements render every transition a risky manoeuvre.

So we were told we need to go on a social housing list and await a suitable house.

Our house will not fit a lift, nor will it accommodate an extension, not to mention the ever size increasing equipment and overall lack of space to breathe.

I am told the housing could come through tomorrow – or in ten years, or even not at all.

Housing like ours is in high demand but seemingly non-existent. I see constant new build houses and flats being built without a moment’s consideration for families like ours.

We don’t want to sell our house.

But we will have to. I have recently turned to the idea of renting again.

It is a huge step back for us and actually renting a bungalow here will cost almost double what our mortgage does.

My biggest concern is why this is being allowed to happen?

What would have to happen for this very serious issue to be given the attention it deserves?

I understand fully that this isn’t the fault of anyone in particular, but at the end of the day the safety and quality of life of our whole family are being compromised by our current living situation.

In our most recent TAC meeting I voiced these concerns. And whilst it was acknowledged and empathised with – there was no one around the table with the power to help fix this problem. Everyone has agreed it is a very serious issue but has nothing within their remit to assist.

We can’t magically force an adapted house to appear from nowhere, no one can. But surely there is an option out there somewhere.

I am awash in a land of researching – researching criteria for housing benefits, finding contact details for local politicians, seeking out applying to TV shows for adaptations (even though I know full well they only help people who have land space for their house to be extended) and so on.

I don’t want to be one of those people who mope and have an overwhelming sense of entitlement, but this is a real problem.

At the same time I know there are people far worse off than us and this does make me feel bad for being so upset about these issues.

But what will it take?

What if I tripped over her tube carrying her up the stairs?

What if she hits her head on a door way again and gets seriously injured?

What if my back finally gives in and I am physically unable to carry her up?

We only have two downstairs rooms and it isn’t possible to make these into a bedroom or bathroom for her. What would happen then? Would this cost the “system” more to provide care than it would suitable housing?

Yesterday I rang a letting agent about renting a property. I explained our current arrangement and what we are hoping to achieve. The lady said “there will be no point viewing the property until you sell your house”.

I explained the catch 22 of this… what if we sold the house then this property wasn’t available?

How can we sell our house not knowing exactly what is going to happen and where will we go?

In my opinion you should be allowed to rent all the houses you want as long as you are able to pay each month.

I got emotional, cried, ended the call.

I have since received three voicemails from this lady who is obviously embarrassed at how she directed the call. She is trying to get someone to come and value our house… she admitted to “getting the wrong end of the stick” and hadn’t stopped to consider that we have saved up enough that we can rent and sell our house once we have moved out, for example.

I am infuriated that they were so money minded and so self-interested that they didn’t stop to listen to the full story. I understand that they are a business and that it needs to be worth their while… but all I wanted was to view the place! It felt like a huge barrier had been put up. It felt like yet another avenue was closed off for us and that we are destined to struggle on until the worst happens.

It shouldn’t be a case of whoever shouts loudest, or worst case scenario occurring and rendering you unable to be a carer anymore.

It should be that strategies are in place to help families like ours to pre-empt future issues and prevent them from happening.

The world knew three years ago that my child would have significant mobility challenges.

Where is the provision for this?

Her hips are already starting to become asymmetric and if my back is gone how will I do our bench sitting and standing frame transfers?

I will let you all know where I get with the contacting of the MP and so on. I want to at least try and also speak up for, not just my little girl, but for everyone out there who is seriously risking their mental and physically health everyday trying to care for their child safely.

We only get one chance to live and it pains me deeply how challenging things can be.

I want to move past this issue.

I want to be able to go from car to house without injuries and twinges in my back.

This way I can focus on other areas in our life such as physio, communication, gastro issues… maybe even getting a hobby.

Look after yourselves everyone. If you are going through what we are – I’m sorry.

I hope that you too one day have what you need to live as much like everyone else as possible.

If I win the lottery… I will try my best to help others in our situation! Until then… painkillers, doctor visits and whatever else to fix my back and more star wars themed entries into my little home.

May the force be with you.

Halloween used to fill me with so much excitement – I’m not even sure why.

I don’t like sweets that much, fake blood makes me feel sick, my eczema does not allow face paint, my anxiety makes me jolt with surprise every time someone knocks on my door.

I think it is the “rock chick” in me… the darkness, the time of year, the nice leaves and so on.

It has kind of taken on a new meaning for me now I have a child.

When I was pregnant I even imagined how Halloween might look for my future child and me.

When I was a child I used to typically dress as a witch or a vampire and I would get taken to various neighbours houses and also to trick or treat my grandma. It was all very exciting (except for the time I got a banana as a treat. Or the time the vampire blood made me be sick and then I was too ill to enjoy my treats).

Of course, fast forward a few years and here we are in the world of cerebral palsy.

A world I did not expect to become a part of. A world I am still finding my feet in and trying my best to navigate myself and my child through this turbulent venture.

I would be lying if I said my heart doesn’t ache a little at these events… I would very much like to enjoy Halloween how “typical” families do, but in a way it’s kind of cool finding our own way of having fun and learning.

Also, in some ways I think it’s a bit of a silly thing to celebrate… a bit like bonfire night and Valentine’s Day.

But I suppose back when I was a child these traditions held a real place in my heart and brought great excitement to my life, and we need to continue that into future generations.

This is our third Halloween together. Last year was great.

Amy’s respite centre had a Halloween event on… there was sugar skull decorating, a buffet, and generally an amazing atmosphere.

I like any event where there is an equal number of wheelchairs to mums.

I like it when I’m in a room and you’re wondering whose feeding pump is alarming. It brings me comfort… this is normality, this is our community, and we are very lucky.

This year I expect I will dress Amy and I up, and await trick-or-treaters.

Amy has lots of cool lights so I plan to light up the front room bright green.

I don’t think cognitively Amy understands these seasonal events yet. I am already trying to teach her Christmas songs so there are no sensory issues in nursery when songs she doesn’t know start to be sung. (Honestly, if you sing the wrong song there WILL be screaming! So far Jingle bells is accepted.)

I have seen so many people talking about taking their child out in their wheelchair trick or treating and so on.

I know for a fact that there will be huge temper tantrums if I even try to leave the house with her after 6pm…

..also I don’t always like the thought that we might scare someone or annoy them by knocking on their door.

I worry too that if I did take her she would find it pointless that she is being given sweets when she is unable to eat. I certainly can’t go round insisting people hand out electronic switch adapted toys now can I?

This year we have a few really cool all singing and all dancing Halloween toys. One sings the monster mash and the other walks around and does a spooky tune.

She seems to really like them. I am hoping that these are toys we could maybe bring out each year to remind her of this particular event.

We’ve had a lot of fun in the supermarkets looking at all of the noisy, glittery, spooky decorations;

It is like a free sensory treat going to shops and garden centres at the moment and I think I love it as much as she does!

I do find that with each year the range for Halloween becomes more and more extensive.

We have managed to buy so many light wands… the sort you would use for visually impaired children and pay triple the price for on some websites.

The same goes for Christmas decorations… the beads, lights, tinsel… perfect for children with visual impairments like Amy and so good for exploring textures and sounds.

So I think this year it will be a quiet one… stay in, hand out treats, most likely watch videos on the iPad.

But I hope we get to carve a pumpkin together… a good sneaky opportunity for messy play.

Any new activity that we do will be helping shape Amy’s understanding of the world and it is so important for us special needs parents to really nurture their curiosity…if they can’t get out to the world we do need to try everything in our power to bring it to them and make sure they are included like everyone else.

I hope that by next year she has a better understanding of it all as she will be older.

I would love to be one of those parents you see that has decorated the wheelchair in a really elaborate costume that looks really cool.

Maybe one day we will trick or treat like other families do.

I hope that further into the future she will share my love of cheesy Halloween films and will sit and binge watch the lot with me!

Who knows?

Whatever you do this October, have a great one!

I’d also love to know what other families similar to ours do at this time of year?!

It is one of those things where if you have ever had a child in NICU then you are most likely all too aware of it as generally it will impact how you see the world forever from the moment you set foot in there.

I have no scintillating statistics to share with you all, nor do I have any amusing anecdotes or facts, but I do like everyone else have my own journey to talk about.

I don’t think that even half an hour passes where I do not think back to those probes, tubes, wires, monitors, machines, beeping that we encountered two and a half years ago….

My daughter was born full term after a healthy pregnancy.

Her heart rate slowed when I was in labour and I was rushed for a Category-A emergency caesarean section.

To this day that scar serves as a painful but also joyful reminder of Amy’s entry into the world.

The scar has faded but the whole area around it feels numb- quite a fitting metaphor for how I deal with the PTSD acquired from that time.

It happens less now, but at night when I go to bed, I sometimes almost feel all too real that sensation of being laid on a hospital bed and being whisked down a corridor for the emergency surgery.

As I move there are people shouting, people talking to me and asking me questions, my partner’s terrified face rushing alongside us.

I can see the ceiling of the hospital corridor – lights – ceiling panels – lights – ceiling panels. Breathe, breathe.

Must remember to breathe.

“Make my baby safe!” I scream in desperation, no idea what is happening. “Are you allergic to anything” asks the surgeon as we rush along. In my traumatised state “pineapple!” I retort, barely able to speak. Something we would look back on and laugh about when reading the birth notes months later.

“Ceri-Ann! Ceri-Ann!” I hear in a dulled but echoed voice.

My eyes start to open. I am hooked up to all sorts of machines, I am pumped full of morphine and feel strangely serene. “I am a robot now” I said as I woke up from the anaesthetic. Yet another amusing anecdote from that day.

“Your baby is seriously ill. She is fighting for her life. This. This. This doesn’t happen” said the senior midwife gravely from the end of my bed.

She looks devastated. A sobering moment.

I had thought up until then that they were just “preparing” to bring my healthy bundle of joy to me.

But no, this was real, this was terrifying, this was what I didn’t think happened to “people like us” (whatever the hell that meant).

We had a brief meeting with Amy. She was lifeless, motionless, covered almost entirely in tubes.

She was transferred to our city hospital for cooling therapy. She had suffered a lack of oxygen for eight minutes and acquired a serious brain injury (hypoxic ischemic encephalopathy – grade 3)

The next day I hyperventilated and screamed until we were transferred to be with her.

I don’t normally act this way – mother’s instinct had superseded everything else – even having just endured major abdominal surgery I somehow found the strength to rush round in a panic which was strange as I was entirely reliant on a wheelchair for days after that.

This is where our NICU journey began. 

Until we encountered this I had absolutely no idea such places existed, that such sorrow and such joy could exist side by side. The hopeful look in parents eyes as doctors deliver them information.

We were so vulnerable – we had no idea what was going on.

“She may not make it through the night” said the doctor. “And if she does her quality of life will be significantly compromised.” I stuttered on my words, still trying to make sense of what was happening; “is there any hope?” I asked.

Silence.

I would lay awake, as would Phil – just staring at the clock, staring at the wall.

How had this happened to us? Why did our little girl have to suffer? Will she make it?

How on earth will we cope if she doesn’t?

Our days were made up of many visits from our parents who were so kind and washed our clothes for us, brought us food, tried to cheer us up. They were also made up of huge victories like when she did her first wee – proof her system was working!

The day they turned off the cooling cot, the day they lowered her oxygen, the day she stopped having constant seizures – each one of these things were absolutely huge for us and part of the many steps to getting her back home.

Aside from that, the other perks were gross microwave meals, constant pre-packaged sandwiches, showers in the hospital that caused agony on the stitches, and so on.

It wasn’t ideal; things improved when we got a place at Ronald McDonald house – we got at least some normality here as we could buy in and cook our own food (not that we really felt like eating!)

The nurses were absolutely amazing – I have never seen anything like it.

So dedicated and knowledgeable, they never ever stop! They offered us continuous unrelenting support, comfort and conversation.

I always remember when one nurse had seen us literally collapse to the floor crying after I said “why doesn’t she move?” and the nurse said “there are good days and bad days… today was a bad day. But there will be good ones too”. She was right.

Many of my hours there were characterised by a bitter sadness at how most parents get to pick up their child immediately. They leave the hospital same or next day.

We waited five days to hold our child, and when we did it took 45 minutes to safely get her from the incubator and into our arms.

I remember at that time thinking I was endangering her by holding her in case I knocked a tube out – a mum should feel like she is protecting her child when she holds her. It still hurts to think about.

The other hours were spent either sterilising breast pump accessories, or indeed expressing the milk via a pump. This was a very exciting time for us, not only did it keep us very busy, it also meant I was giving her something that would help her. It was amazing and I continued to do it for as long as I could.

Anyway. You may have gathered that, once I get onto this subject, I could talk about it forever.

We were only in NICU for two weeks; the remaining four weeks was spent back at the local hospital once Amy had stabilised and was safe to be at the neonatal unit.

But I shall leave this here with you all… if you ever see a fundraiser for a local neo natal unit, a NICU, or Ronald McDonald house – please spare some pennies.

You may not realise just how much those pennies matter to people like us.

There were many things given to us during that time that softened the blow and they may not have been available if it weren’t for the generosity and kindness of others.

If you too have been through a NICU journey – feel free to leave it in the comments. I read all blog comments.

Also if you are struggling to sleep, or cope with the memories, if you have flashbacks, PTSD and so on – I urge you to talk to a doctor and seek medical attention for either medication or therapy.

Talking about it is half the battle sometimes.

If someone you know is staying at NICU with their child – they may want some space, don’t take it personally, it’s just a really hard time.

If they are happy having visitors – snacks never go amiss, also tell us about back home and your day etc. – sometimes the distraction is welcome, we forget there is a real world out there.

These days not many things excite me but this time of year gets me a bit giddy every time.

Two things happened today that made me realise that autumn (or fall depending where you are) was upon us…

The first was all the crunchy leaves that are starting to appear on the ground.

The second was all the jokes online about it being time for pumpkin spice lattes and so on.

Not only is autumn one of the most beautiful times of the year, it is also mild enough that hot drinks somehow taste even better and you can cover up with layers of jumpers and coats.

I remember both autumns so far with Amy… even though going out is hard and she often gets upset on walks… there is so much more to take in.

This year I can’t wait to try and involve her as much as I can, now she is more aware and her vision is better (with glasses) I feel like we should really take advantage of the sensory pleasures that autumn brings.

I am thinking walks in the Upsee where she can hear the crunching with each step in unison we take.

I am thinking collecting leaves and making artwork when we get home (even if it is usually me that is excited and not her!)

I am thinking warm drinks for me and warm blankets for her.

Sometimes I even let her taste the cream on the latte as it is so sweet and yummy. She is 100% tube fed but we are allowed little tastes.. when she permits!

The other great thing (some don’t find this great) is that the Christmas and Halloween items start to appear. It’s so fun!

Trips to the garden centre become like a free trip to the illuminations; there is sparkle, colour and wonder everywhere.

They say as you get older the magic of that time of year fades away but having children rekindles that love and makes you want to pass on that magical feeling to the next generation.

Capturing Amy’s attention and getting her excitedly involved in something is not easy and it is often quite unpredictable what she will enjoy.

Earlier this year we went to a massive indoor illuminations place – she hated it. BUT, they had this light show that went on every 20 minutes and she LOVED it.

Because it had lasers, and moving lights and music she was absolutely enthralled. I was actually very moved by how much this show unexpectedly amazed her. We stayed to watch the show again a second time and she was equally pleased by it.

My whole family were there and I could really feel a warm atmosphere and everyone was just so happy because she was.

This is what we want to achieve with this next few seasons!

You may have noticed that in a lot of my posts I complain about equipment, appointments, housing issues and so on… but when I get onto a subject about something I love it really does get me excited.

I really don’t get that feeling often, I used to even get excited about a trip to the supermarket – these days you have to prize me out of the house or bribe me in some way.

I have become so antisocial, a bit of a recluse, and just so drained.

A lot of the hobbies I once had no longer interest me, and with the stress of everything I have gained a lot of weight.

Summer this year has upset me a bit.

Amy is now a size where she is getting difficult to carry for long periods of time and this means that a lot of summer activities are becoming a lot harder on our backs.

Trips to the park, going in the paddling pool, going swimming – things like this are becoming more challenging.

My thinking is that autumn will be the perfect time to properly embrace the great outdoors without being sticky hot and also unable to move the next day!

I guess I am trying to declare this time of year as special needs parent season!

No ice on pavements when pushing the wheelchair, no overheating when carrying around a park, able to wear more clothes to hide feed stains and unbrushed hair etc.!

I am seeing more and more now the different between Amy and her peers. Developmentally and so on.

Trips to the park now mean children her age asking why she isn’t walking or what that tube is.

It’s innocent curiosity and these children are so eager to learn and accept Amy and be her friend. As a parent I find it bittersweet.

Recently she dystonically hit a child at the park and I said “sorry, she didn’t mean to do that” and the little girl responded “don’t worry Amy. It’s okay. Your muscles work differently to mine” and then she hugged her. It was the sweetest moment.

This time of year though, it makes me somehow want to be a better person. Weird isn’t it? Do any of you feel the same?

What I find with these holidays is that you have far less appointments too and appointments are often what fills up our week and gives us a strong feeling of routine.

The lack of routine has been a bit of a surprise for all of us.

I looked at my diary yesterday afternoon and was astounded to discover that September includes: An MRI, a surgical consultation, a gastro follow up appointment, physio weekly, speech and language, a specialist physio appointment where we discuss measurements and equipment, a pediatric appointment and a TAC meeting.

I feel overwhelmed and unprepared already.

Things that can set my anxiety off are: Amy’s tantrums/unpredictability, driving to places, the prospect of parking issues, being late and so on.

I get so bad that it affects my sleep and keeps me up at night.

I want to make lists about lists I need to make, I want to do research so I go into the appointment not completely clueless and so on.

I can’t decide if I am looking forward to it or not.

I keep feeling these waves of grief at the thought that the summer holidays didn’t go as I hoped it would.

Most of our days out involved inexplicable irritability from Amy to the point of having to constantly change location or activity.

It has exhausted and upset me more than I would have thought.

We had one trip to the zoo where she cried inconsolably the whole way there and all the way around the zoo.

I had tried to be optimistic and kept telling myself, “She will be OK after she’s had her meds,” or, “Maybe she needs a nap, let’s carry her for a while,” until my reserves of optimism were depleted and I began to cry.

Days out are hard anyway, even just with worries about wheelchair access and packing supplies and ensuring everyone is prepared.

I worry when she cries, will she then choke and be sick and will she aspirate, will she get a chest infection and have to go to hospital?

Usually not, but it happens.

You know when everyone is staring at you because your child is crying?

People sometimes tell me not to care what people think and that they probably aren’t staring… but genuinely, we had quite the audience.

We kept the trip short, came home, and were saying we would never be doing that again.

We will, of course, because you can’t give up and you have to keep trying.

When your stress levels are heightened in this situation and you have exhausted every option to try and diffuse it you can so easily go into panic attack mode or crying mode.

I went for both on this particular trip.

I started to notice all of the pregnant mums or mums with new-borns staring.

All I could think was 1) how much I couldn’t have done that when Amy was a baby and 2) It brought back all my upset about my miscarriages and the troubles I am having trying to have another child.

I notice the children Amy’s age fascinated by everything and having a great time and also staring because we are causing so much noise.

I see them have tantrums but it’s over things like sibling squabbles or who gets to go where etc. and these problems wash over or if they don’t at least it will change in time.

Her irritability at the moment seems to be hindering a lot of things I want to do with her.

It isn’t just typical toddler irritability, it is next level and once she is upset that’s it, you just have to ride it out or wait for her to fall asleep. It is heart-breaking.

I so much just want her to enjoy life.

So far my reasons why she might be upset are the following:

Communication issues (she cannot speak)

Frustration (she wants to do something but can’t explain what or her body isn’t allowing her to do what she wants)

Muscle pain from high tone, tired (she doesn’t really nap well if at all and gets very upset when tired but won’t sleep)

Seizure activity (eeg came up okay but had a few scares)

Feeding issues (reflux, digestion issues, 24 hour tube feeds can’t be nice on the stomach)

Boredom (typical toddler behaviour?)

It’s quite the list isn’t it?

I think I could probably add more to this and will actually be writing it up on paper to show our pediatrician as these are all things various professionals think may be bothering her.

I am looking forward to getting back into the routine.

Maybe this will help our current situation and hope desperately that next summer is a more memorable and fun one.

When we have a bad day out it either makes you not bother again and get bitter and jealous of people who seem to be having a great time; or it makes you anxious every time you go out and you know your child will feed off that anxiety and most likely end up having a tantrum of sorts.

We have had some lovely moments as well this summer, and indeed some lovely days out too.

I just hope that next summer has much more of that.

A happy child = happy parents.

We all need time to reflect, to not feel on edge, to immerse ourselves in something other than the world of additional needs.

Tube feeds, speech therapy, physiotherapy, reading medical journals, indulging in forums, collecting prescriptions etc. can take over, and they do.

These days I seem to plod on for a long time and then all at once become quite ill and overwhelmed.

I am sort of in that phase now.

I don’t look after myself how I used to and much as I try some days you just cannot be bothered, there are more important pressing issues to address.

(Like WHY have I had to phone gastro four times? And I still have no follow up appointment. Or WHY did our latest medicine trial not come up for review as agreed? WHEN will our first IEP be and our next TAC… I could continue this forever but to preserve my mental health and possibly yours I will leave this here.)

My daughter is my entire world, I don’t think a minute passes where she isn’t on my mind.

But wow, she is a demanding little madam!

The nature of her cerebral palsy is such that she is entirely dependent on others to get around or to play.

She has a short attention span and wants constant activities and is very quick to tell you when you aren’t doing the right thing!

I am very blessed that she can communicate in this way by laughing, babbling or shouting.

She does not speak with words, but her body language, expressions and tone of voice is incredible and she is good at getting what she wants.

I recently became quite run down to the point where I entirely lost my voice.

It has been hard to commit to about 10 hours of singing songs and being silly every day.

Thankfully our overnights at respite have started.

I hesitated for months after being awarded them because of the immense guilt I felt at the thought of her not being here at home with us.

But we took the plunge and have them twice a month now.

It is still hard to adjust to but even my body is showing signs it needs it with its eye bags, sore back, bad throat and general achiness.

For my birthday we went away for two nights and this was massive for us.

I missed her intensely and I think we probably spent a lot of that time talking about her and wondering what she was doing.

The funny thing is she was probably absolutely fine… she has the full attention of all of the amazing staff not to mention a great sensory room and endless amounts of electronic toys.

She has an overnight tonight and she is all I can think about right now.

So far we have taken the dog on a long rainy walk in the countryside and are planning to get a pizza delivery later on tonight.

These are two things we don’t really do when she is here… the wheelchair can be difficult to push up in the hills, not to mention that she doesn’t like wind, rain or quiet!

As for pizza, we do eat that when she is here but it is hard to relax sometimes as she takes a long time to get to bed even with meds.

Then there are the constant tube feed changes and so on.

I can’t wait to pick her up tomorrow and I bet after an hour I’ll want a nap or a break!

So I guess the point of this post is to say that we shouldn’t feel guilty for needing what we need.

I see this also as valuable time to recharge and try to be the ‘me’ that I was before appointments, admin, and therapies took over our lives!

It’s the summer holidays now so I think I will take advantage of the fact I can still lift her and have a lot of intense trips to the park lifting her onto slides and using our GoTo seat in the swings.