Acorns and Memories

It’s so easy sometimes to let the overwhelming busyness of life take over. Some days it feels absolutely unrelenting. My goal each day is to have at least washed the dishes before I go to bed so that the house is a bit nicer in the morning. Such a basic thing yet somehow sometimes so hard to achieve! 

I think those dishes represent something a bit deeper – a need for a feeling of control over life. Life with a medically complex child can be so unpredictable and sometimes being vaguely up to date with something as mundane as housework helps tether me to reality.

I have this habit of attaching greater meaning to things. For example, ducks represent freedom to me. I will never forget being told to keep talking to Amy when she was in NICU ventilated, in a coma, and hypothermic. I begged for her to get better. Told her about all the great things in the world. I promised to take her to see some ducks and feed them. (Which we do. Usually to her disgust these days!)

My most recent metaphor is acorns.

. I absolutely love autumn and all it represents. The beautiful colours, the harvests, the pumpkins. Autumn to me represents comfort. Blankets, coffee, TV, home, peace. Home is so important to us all and nothing will make you appreciate it more than frequent hospital stays. There is nothing like your own space and your main people. 

Acorns to me represent collecting happy memories and stashing them away to help you cope through harder times. I suppose I got this idea from squirrels gathering food for winter.

If truth be told; life on a day to day basis can be very stressful for us. Amy’s moods can switch quite suddenly and she experiences most moods in extremes. It means that happy moods are an absolute delight to behold. You can’t not smile when she smiles, and her laugh is infectious. 

Unfortunately though her cerebral palsy comes with chronic pain, dystonia, seizures, gastro problems, learning difficulties, and frustrating communication challenges. When she is angry she is very very angry. All you can do is stay nearby and try to prevent her from injuring herself (or indeed those around her).

Her anger and sadness can be incredibly intense.

During those times I remind myself not to take it personally – she does love us – this isn’t about us – it’s about her right now. We ride the storm together, I regulate my breathing, I count in my head. I wait for the right moment to try and comfort or distract her; always gauging the best time to give her space or be close to her side.

I read once “Your child isn’t giving you a hard time, they are having a hard time.”. I also read that all behaviour is communication. During these times she is telling us something, and we need to do our best to try and ascertain what it is.

During these turbulent moments I refer to my acorn collection. The day out last week with fellow HIE families. A beautiful adapted building with hoists, ball pits, slides. Amy was really happy during this whole session. Unfortunately the hours following it she was very distressed and we couldn’t ascertain why.

I clung onto the success of the morning – we have previously had to vacate special events early so this was a huge win for all of us. I think back to Friday last week when Amy could access our front door for the first time ever – her laughter and excitement reverberated throughout the house as I pretended to knock on the door to visit her.

I think of when we find a new song she loves and how we all sing it over and over to keep the smiles coming.

I think of walking through the woods with my dog and my best friend and her dog; knowing Amy is safe and happy at school, knowing I’ll make a nice meal for tea for Phil and I, knowing that this too is normal everyday life – not every moment is paperwork, appointments, bad news, medicine, advocating, washing etc.

A bad hour is not a bad life and whilst there will always be challenges, you will always be adding acorns to your collection too. Amidst the absolute chaos that is my life, I know that I am so blessed with my amazing family and friends. I have the most amazing partner, beautiful and clever daughter, lazy and gorgeous dog. I try to never lose sight of the incredible things life has to offer, even this year when I have grieved the loss of a best friend and also our baby that was due in October. We must try to live our lives to the fullest even if some days that looks like snuggling up on the sofa and doing nothing and on other days it looks like a hike in the wilderness.

Next time you feel the weight of the world on your shoulders just remind yourself how far you have come. Take a moment to reflect on all of the amazing things you have to be grateful for. This moment will pass, and better moments are ahead. Appreciate the small things, be kind to others, tell those close to you how much you appreciate them. Take a deep breath, refer to your metaphorical acorn collection and take solace in the comforts autumn has to offer.

Transforming Spaces

For around 5 years now we have lived in a house whereby we have no access to our front door. Every delivery and door knock was greeted by one of us running round the perimeter of the house to redirect the person to another door.

I am sure there are many of us living like this – climbing over physio and medical equipment to retrieve your post from the letterbox. Visiting the loft several times a week to access supplies. Not being able to leave the house uninjured fighting against the clothes ‘airer’ and shower seat. 

There have been times I have sat in the loft hatch swinging my legs gently and having a quiet sob.  Why does it have to be so hard?

I do of course then give my head a wobble and remind myself how lucky we are to live in a bungalow – we no longer have to carry Amy up a steep and dangerous flight of stairs, nor do we struggle for wheelchair access into our house like we used to. 

The bathroom situation has been by far the most difficult.

Presently we have a tiny wet room, a large shower chair, and an ever expanding 9-year-old. We had to stop wheeling the chair through the house as it was damaging the floors with water. This has meant a lot of physical lifting on a slippy falling apart tiled floor.

Amy has a severe movement disorder and can be quite dangerous when moving and handling. We have had our share of injuries over the years which is unfortunate when it’s all for the sake of maintaining basic levels of hygiene!

Over the last couple of months, the planning permission and funds were finally agreed to make our lives so much easier. I recall a few years back someone from the council advising me to expect lots of obstacles and for this to be a long process. He was correct. 

For some unfair reason, adaptations are a bit of a postcode lottery here in the UK. In the next county over for example, people are stuck using mobile hoists which are much more time consuming and difficult to operate whereas where we are, ceiling track hoists are standard for a non mobile person.

As usual it always comes down to money.

Sad as it was to have to sell our house that couldn’t be adapted; we have been very lucky to be renting privately from an amazing charity. They have been instrumental in the instigation of these works and have been so supportive and understanding of our situation.

Yesterday the flooring work started. It has been an intense and incredibly productive few months. The builders, electricians, plumbers, decorators etc have worked tirelessly day in day out to get to the point we are at now and I am astonished how quickly it is coming together.

It hasn’t been invasive, the builders have all been lovely, and it has actually added a little excitement and positivity into our lives. I will likely miss them when they are gone!

Eventually Amy will have everything she needs in one room.

A bath at one end, a bed at the other end, all with a H track hoist in between. A bath is instrumental in helping with Amy’s high muscle tone, dystonia and mood swings. The knock on effect of excessive distress is usually seizures, insomnia and worsened gastro issues. 

It’s the only activity we have seen make a profound difference to Amy’s comfort and quality of life. Every time she goes to respite the carers all tell me how much she enjoyed her bath and it makes me so happy to know she has this coming to her home too.

It has been so exciting choosing paint colours and flooring – it is actually starting to feel real! We are just waiting for hoist tracking, the bath installation (it’s one of those massive hi-lo baths with jets!) and for the hospital style bed to be taken apart and put into the new room.

I have been frantically having a good clearout because I am determined to truly optimise the extra space we have and make it as great as it can be. It has been so much hard work! An endless succession of different professionals doing their part excellently – and I want to make sure I do my part which is do the space justice… and makes lots of cups of tea!

The work will absolutely transform all of our lives.

It will promote better well being for all of us, as well as being able to safely navigate through our little bungalow with space for Amys’ every growing medical equipment and supplies. 

In the past I would watch programs like DIY SOS with mixed emotions. Thrilled the people are getting what they desperately need and deserve. Angry that they’ve had to resort to this extreme to get a home that is liveable. Frankly; and I hate to admit it; a little jealous.

So many of us need and deserve significant adaptations made on their property. For some it is a massive fight for funds, planning permission, or even getting the relevant persons to agree that something needs doing. Families like ours must fight constantly for so many things we don’t even want to need, and at times it is easier to bury our heads in the sand and admit defeat before we even try.

We often run on empty and pick our battles carefully.

It is easy to understand how people can get trapped or end up with mental health issues and worsening conditions because often the system around us doesn’t support us how we need it to.

Getting to the point we are at now hasn’t been easy but we are so very lucky and appreciative. One by one we have ticked off everything in the “cerebral palsy bingo”; big wheelchair van, moulded wheelchair with medical storage, rooms with hoists, and finally adapted bathroom! I know after this we can breathe a collective sigh of relief and start to enjoy an easier and safer life.

I know there are so many people out there desperately seeking to be at the point we are at now. Please don’t give up. You can absolutely get there. There was a time when I thought we wouldn’t be where we are today. I am rooting hard for you all and cheering you on.

For one reason and another it has been an incredibly hard year for our family so I am loving being able to share something positive with the world.

I can’t wait to update you all when Amy finally has the dream bedroom she deserves so much.

Posture, transfers, and what lies around the corner.

One thing I’d say is a constant everyday every moment thought in our life with Amy is posture/transfers and equipment. Another constant is the fear of the unknown – what new and terrifying diagnosis lies waiting around the corner?

Very very early on in Amy’s life we were introduced to positioning. Making sure she’s upright enough that reflux is minimised. Not leaving her on one side too long. Rolling up towels and wedges to give her support and symmetry. It becomes second nature eventually as you try and ensure a healthy spine and hips.

Amy is now 9 years old. She has quadriplegic cerebral palsy. Her type is athetoid/dyskinetic. Whilst she is non-mobile, she has a severe movement disorder and moves constantly. The movements are sometimes referred to as dystonia/chorea/ballism/dyskinesia. She’s really strong and her muscle tone fluctuates – she can be super stiff one moment, and like a rag doll the next. She’s on quite a few medications to help with the pain and to help her gain some more control of her movements.

A few times a year we are invited to a cerebral palsy clinic with the orthopedic doctors.

They give her a thorough check over and send her for an x-ray. Thus far we have been so lucky that whilst her hips are tighter on one side – she is not currently displaying any signs of hip displacement or scoliosis. So far I have left pleased each time that things haven’t worsened. We have several friends who sadly have needed or need hip surgery, or who have scoliosis. It’s a devastating journey, fraught with some very difficult and unfair decision making. No one wants their child to need surgery or be in pain. Amy’s constant movements though troublesome, do minimise her risk of things such as pressure sores, or being stuck in one position for too long in the night for example.

Everyday I say to myself hmm she has been in her chair a few hours… maybe we need to bob home so she can have a pad change and a stretch.. I don’t want to put too much pressure on her hips and have her sat uncomfortably for too long. Equally I may think oh gosh she’s been lay down a lot today. This isn’t good for her chest or reflux, maybe she should go in her walker to help build up some strength etc.

It can be really difficult ensuring she has all of her postural needs met and I know that her school also work hard getting her in her standing frame plenty to help her bone density. I feel a daily guilt that we don’t reintroduce her sleep system – she already has real difficulty sleeping and the last few attempts were a disaster!

So imagine my surprise last week when I learned that Amy actually has several small fractures in her spine!? 

In December last year Amy was very poorly in PICU with a collapsed lung. As a follow up from this she had a CT scan under general anaesthetic to help us establish the severity of her lung damage. Amy’s chest infections have become worse and worse over the years and medically she is much more complex with it than before.

The idea of the scan was to see in detail what is happening in her lungs to help us build a better treatment plan for her. 

The scan showed mild bronchiectasis. We expected this.

What we did not expect were the fractures.

We were told this is due to osteopenia (or low bone density). This can be quite common in non-mobile folks as they are not weight bearing as much, thus don’t have the same density or strength of bones.

I had heard osteopenia mentioned in relation to Amy before but didn’t pay it much attention as I knew she was having all of the right physio and until recently hadn’t sustained any fractures.

We have now been told that she will not be safe to have percussion chest physio and thus her treatment will be more reliant on nebulisers and suction. But even worse, she now needs to have IV bone infusions to help strengthen her bones.

I am so relieved she had this scan otherwise she would have been living with these painful fractures without us knowing. As Amy is nonverbal it can be really difficult to ascertain why she is distressed. Often you are treating it blindly hoping paracetamol or a position change will help. But it really made me sad to know that she is contending with this on top of everything else. 

I am now in a position where I am not sure what to do for the best. Do we amp up the physio to help her bones. Or does she need more bedrest? We will be liaising with various specialists (endocrinology, respiratory, dieticians and chest physio) to make sure we get Amy exactly what she needs. We have a lower threshold now for giving pain relief, and we are to take much more care when doing transfers.

She apparently won’t be in agony with the fractures but it will be causing her pain.

Sometimes it can be disheartening that in spite of your constant attempts to do the best thing, that things still go wrong. Each new diagnosis she receives I hope to myself that this is the last one. It seems sometimes that you all just can’t catch a break. For years we struggled with horrendous gastro issues. No sooner were they resolved we were dealing with life threatening uncontrollable epilepsy. Once the epilepsy was better managed then chest infections became a huge and constant issue.

It seems now that in our pursuit to help her lungs, we have found a new obstacle to tackle. In the process of trying to minimise interventions and medications we are very often thrust back into reality with a bang and made to consider even more of those things. I don’t want to rant – I want to be mindful, and grateful, and happy – but equally no parent wants their child to be in pain or to suffer and we will move heaven and earth to make sure they get what they need for the best quality of life and happiness.

I am torn sometimes between accepting things as they are, and wanting to scream up at the sky “why her? why us?”.

It all does seem very unfair at times. Why should our little girl ever have to suffer. I’m not sure Amy would call it suffering as she is a tough cookie and faces each day with a tenacity I have never seen in a person before… but part of me thinks that’s because she has no other choice. She knows no different.

I know she and we will get through it. And we will continue our constant ‘umming and arring’ over positions, equipment, comfort and posture, and we will continue to hope for the best. We hope to extend the life of her lungs, to avoid as much as possible those difficult conversations relating to hip and spine operations.

HIE Awareness Day 2023

Okay, admittedly I am a few days late in writing this one as HIE awareness day was indeed April 4th. It seems quite apt given that my daughter Amy-Rose, born with HIE was also late. By at least 4 weeks. So there we go. This time of year seems rife with relevant awareness days for us – we’ve had epilepsy, cerebral palsy and now HIE! Truly a time to be aware.

I find that most people don’t know what HIE is. In spite of it not being relatively common (approx 2 or 3 babies in every 1000 live births, and less commonly later in life for some), people often look aghast if I mention “HIE”. It stands for hypoxic ischemic encephalopathy. In short it means lack of blood oxygen and restricting of blood flow affecting the brain.

There are a variety of reasons HIE can happen, be it placental abruption, meconium aspiration, cord entanglement, and many more. Amy was full term, and I had a very unproblematic, even at times, pleasant pregnancy.

I certainly did not foresee any of what unfolded in February 2014.

Amy is now 9. It’s amazing how your language in relation to HIE evolves and changes over that time. When Amy was first born I recall frantically seeking answers. I was comparing every other “grade 3” baby to Amy and trying to work out how her outcome would be. I remember reading over and over again about Apgar scores (conditions recorded about a babies’ health immediately after birth).

I remember when Amy was two months old. I was sitting on her bedroom floor in the middle of the night with her in my arms. I was trying to bolus feed her milk through her NG tube and was really struggling. The milk kept going down then quickly overflowing over the syringe because her reflux was so bad. When the feed was done, I kept her on my shoulder feeling her start to settle. As she settled I reached out for the bag of leaflets I had received from the hospital. Almost all of them were about prem babies. Amy was not prem. In fact Amy looked quite the giant in NICU next to the other tiny babies. 

I stumbled across one leaflet about HIE.

The leaflet depicted children running through the woods looking happy. The information within it was very limited and didn’t offer any real comfort or insight. I started to sob uncontrollably. What had happened to her? How will she be? Will she run through the woods? 

Fast forward 9 years and thanks to an amazing charity called PEEPs HIE and increased awareness via social media, far fewer parents are being left in the dark on those NICU wards wondering what on earth HIE is.

Truth is, you often only know what HIE is because it has affected a loved one in your close circle.

These days I don’t find myself saying HIE ever really. Once Amy received her cerebral palsy diagnosis this tends to be the main umbrella term for the conditions she has now, and even then, Amy is Amy. No medical labels needed.

I no longer think about outcomes.

Or running through the forest. I know that now Amy is non mobile, non verbal, tube fed, has epilepsy, has respiratory challenges. I wonder if I knew back then how things would be now, what I would think? I think I would have been truly overwhelmed – I can’t keep someone alive with that amount of medical need!? But we can, and we do. It’s amazing what everyone can overcome. We, and our children are so resilient.

We were very lucky that when Amy was born she met the criteria for cooling therapy. This is where the baby is kept in a hypothermic state (33 degrees) to prevent further injury to the brain. This technology hasn’t been around for long and I am so thankful that Amy was born when she was! Honestly, I don’t think she would have been here had it not been for the incredible medical technology and workers we have today.

I no longer spend the day seeking out alternative therapies, or wishing I did more of XYZ

I have had enough harsh life lessons now to learn that sometimes, doing your best and just getting through the day is more than enough. Be patient, be loving, be kind, have a wobble, be grateful, do what you can. But don’t agonize over the future, no matter how unclear it may be. I strongly wish I had tried to enjoy those early days more. Her cute little size, the baby phase. I spent so many nights obsessively researching feeding issues and so much. It needed doing, but I also think I put myself through a lot of undue torture in desperation for things to be easier for us all.

On HIE awareness day I like to think of those who are at the very start of their journey. I send them so many well wishes and so much love and hope. I don’t think Phil or I have ever been so scared as we were back then. It’s an unimaginably painful time for everyone involved. I hate that HIE still happens. I think it will always happen, unfortunately. Hopefully over time treatments such as stem cell therapy will be better understood and implemented to ensure the best possible outcomes for these children. 

I also think about the parents like us – in and out of hospital constantly.

Though we do face many daily challenges, I think our life is a happy one. Sure, there are things I would change. I would like Amy to be more comfortable, to need less medication and intervention. I would like her to be a little less angry and bossy! But in terms of acceptance, the “wait and see” seems to be over, and now it’s about “adapt and enjoy”. I send my love out to all of those HIE parents in hospital, wondering if it will ever get easier, or more fair? We send love to our fellow HIE best friend Jaxon who has been very poorly now in PICU for way too long now.

I think also about those who have experienced loss through HIE. It’s a sobering and devastating truth that not all of these children will live a long life. It’s obviously something I try not to think about. We came very close to losing Amy in December 2022, and every chest infection, every seizure you’re hoping with all your might that she overcomes this and continues to live. I never forget any of the children we met through HIE. Though they may no longer be alive, their memory is always very much alive to all of us and we send all of our hopes and best wishes to the families they have left behind. There are very little words of encouragement other than to be there and keep the memory and names alive of these amazing little fighters.

The Identity of a “Medical” Family

How do we identity ourselves? I think constantly about identity and how we are perceived. I pay probably too much attention to wondering about the perception of complete strangers. What do they think about me when they see me?

I know that ultimately it doesn’t matter what a stranger thinks, but I think what eats at me is the very incorrect perception that families like ours are given everything on a plate and don’t have financial constraints and are in some way freeloading.

It is far from the truth and I always feel on the defensive even when I know the majority don’t feel this way. I have this constant need to feel understood and instead of stares or pity I just want for all of us to be equals, on a level playing field for all, and to be treated with kindness and not judgement.

Our identities are said to include our values, beliefs, and our personalities.

It also encompasses the roles we play within our families and in society. It includes our hobbies and our interests and many other things. I often feel that for families like ours – a lot of this is sort of lost.

Our priorities are a little different. Our perceptions of life are likely somewhat altered by our past experiences and our current challenges. It can entirely change you as a person, for better and for good.

We may have just spent a week in hospital – all plans cancelled, our worlds upturned. We may be exhausted from the 10th consecutive night of broken sleep. We may actually be perfectly fine and just wanting to live as “normal” a life as possible.

We are like shape shifters, adapting to whatever is thrown at us next; often with no warning. I always think that when I am out with Amy they will see a “disabled child” and a “parent carer”.

I have read before that carers very often feel they lose their sense of identity

The role of carer is severely underpaid. There is no annual leave, there are no sick days, there is no special pension scheme. It’s easy to feel undervalued and underappreciated. A depleted self-worth can affect how you feel about yourself and your role in society.

My life is very much Amy centric. I think for most parents their child is their main focus in life, or at least one of them. When your child has high medical needs and relies on you for 24 hour care it is hard not to let that role define you.

I remind myself regularly, I am not just “mum” (as I am so often referred to by many grown adults!), I am Ceri-Ann. 

I am a parent carer, I am mum, but I am Ceri-Ann first.

Amy is Amy. Yes, Amy has a disability and various diagnoses. But before she is a “disabled child”, she is a child. She is her own person.

Identity is so often defined by what you do for a living. I disagree with this wholeheartedly. So many people work a job to pay the bills and don’t necessarily do something that they are passionate about.

It’s a difficult one for me because I am privileged to be Amy’s mum and carer; and yet I do yearn for that “normal” life (if there is such a thing.) I miss being able to clock out at 5pm and be rid of my work responsibilities for the day until tomorrow.

I am on the clock 24/7. She could be at respite, school, the hospice, anywhere, but I need to be ready on a moment’s notice. I am like the 4th emergency service… but to just one person.

I miss the camaraderie of office life. The brew runs. The pointless “this could have been an email” meetings. The social aspect. Even back then, I didn’t identify myself strongly with my work.

Whilst I was passionate about doing my job well, it didn’t define me.

And yet as a “medical parent” or whatever I am; this seems to be my whole life. I think non stop about the next Amy related thing I need to deal with.

I think constantly about advocating and what I can do to raise awareness of accessibility and make a small, positive difference in what can sometimes be an incredibly frustrating world.

I must remember that above all of the admissions, admin, phone calls, appointments, meds, therapies, interventions etc I am also loving girlfriend, nature lover, animal lover, rock music lover, gamer, coffee enthusiast, pizza lover, tree and plants lover, reader, writer, podcast addict.

I am so many things. I am caring, anxious, a bit exhausted, a bit silly, an overthinker, a rambler, a bit of a complainer (sorry!).

Don’t lose yourself

Behind the role of nurse, doctor, physio, dietician, speech therapist, etc you are your own valid, amazing, hard working person.

Amy is determined, hard working, feisty, cheeky, clever, funny, caring, sweet. She is so many things. She is a nursery rhyme lover, lover of the outdoors, lover of songs, lover of toys, lover of interaction.

She is all of the superlatives – I am biased of course. She is complex and not just in her health. She is not to be ignored, not to be written off, and just as important as everyone else.

So yes. You may look at us. You may pity us, empathise with us, stare at us, or maybe just outright not understand us. But we matter, we are important, we contribute, we are valued, we are a multitude of things.

We are not what we appear to be on the surface. We have many layers. We are all complex. We are all human. We are all fighting for our place in this world. We all want to belong and be equal and accepted.

PTSD in Parent Carers – Our First PICU Stay

Parent carers are under-represented. Particularly parent carers of medically complex and/or poorly children. 

I still grapple with the term “carer” because your child is your child, and you do what you need to do in order to maximise their health and ensure they lead an enriched life. However, one must recognise that parent carers often go way beyond the call of duty that is usually required of a parent and thus the carer element has to be factored in.

PTSD is rife in our community, there is no denying it. So often PTSD is spoken about in relation to war, or survival from a traumatic accident. But PTSD can arise from many different scenarios and can manifest itself in many different ways.

I have encountered things over the last month that will stay with me to my grave. Images engraved and embedded into the very depths of my soul. 

I wanted to share with you all our most recent experience in hospital. PICU.

Medically complex as Amy is, we have managed, until recently, to not require the HDU (High Dependency Unit) or the PICU (Paediatric Intensive Care).

Many readers may already be familiar with our journey but to fill you in – Amy has cerebral palsy and epilepsy induced by hypoxia at birth. She is prone to regular chest infections and has several admissions to hospital per year due to her lungs.

November 27th, 2022. We are called to pick Amy up from respite as she is inexplicably “not herself”. I arrive hoping it will be a quick visit to our local hospital. A course of oral antibiotics, hey maybe we will even avoid needing to stay in! Maybe she won’t need oxygen. We’ll manage this one from home, we don’t want to be in hospital over Christmas thank you very much! 

We arrive at respite to a lethargic, unresponsive, floppy Amy. We get to hospital. Oxygen needed immediately. We aren’t going home today.

Fast forward a few days – we are seeing no improvement.

Surely by now the antibiotics should be doing their thing? After a few days we agree to change antibiotics. We have no swab results yet so we are treating this blindly right now with broad spectrum antibiotics. 

I wake up one morning and Amy is highly distressed. Like never before. Something isn’t right.

I notice her gastric drainage bag is full of blood. Coffee ground bloods. Loads of it. I panic, telling myself this is maybe just gastric irritation, I’m sure it’s fine. I know in my gut she is not fine. But I need to stay positive.

Things take a turn for the worst and we are promptly moved onto HDU. I am grateful for the extra medical support. I am grateful of the company. But I am terrified.

I’m like a duck swimming. On the surface all is calm and collected. Beneath the surface I am scrambling, frantically pedalling and kicking. My head is booming, I feel sick to my stomach. Please get better soon.

From hereon I kid you not, I witnessed at least 20 cannulas.

They go stiff, they break and fail, they get knocked out. There would be days I would plead “do we really need another cannula? We can’t keep doing this. It isn’t fair.”

Initially Amy would fight it and try to stop the cannulas going in. As the days went by I saw the fights get weaker and less frequent. She became despondent.

She had accepted this new life of “torture”. A constant onslaught of needles, tubes, wires, chest physio, suction, nebs. It was physically and mentally exhausting. With each new tube and wire added I could see less and less of my little girl. 

It didn’t stop there. Things got worse. She started to have episodes of bronchospasms. Which I had never even heard of prior to this. It was utterly terrifying.

You know those moments when the room suddenly fills with doctors and nurses and you are sort of shuffled to the side to let them do their work? “Are you okay there mum?”, “I’m scared. I’m so scared” I whimper through tears. But this moment wasn’t about us. It was about Amy.

We watched as adrenaline and goodness knows what was administered. What on earth was happening? Are we losing her? What does it mean?

Phil and I had noted a big change in Amy.

The seizures had ramped up, she was on the absolute full whack airvo (humidified oxygen), her numbers weren’t improving, she was on her maybe 4th or 5th antibiotic. They started Amy on the “dettol of antibiotics” and IV meds to help open her airways. I was fully out of my element. Every term and medication I heard mentioned, I kept a note of and researched in desperation to understand what was happening.

We pleaded with doctors to send us to the city hospital. Our local hospital is fantastic. But we had outgrown what they were able to provide. She was on the maximum of everything, teetering precariously between life and death.

I had mentioned several times that Amy’s heart rate was low. Oh the hours I spent looking at those monitors just willing and hoping for those numbers to magically improve. As if my stare alone would make this all okay.

“She’s just exhausted mum” I was told several times. They were right – she was exhausted. But as parents we have that gut instinct. We just know. I have a huge respect for doctors, but there is also a huge respect that needs to be given to parents that have that personal insight and intuition 

The heart rate drops further.

I call for the doctor. She agrees yes, we need a controlled intubation and a central line. This means city hospital. Hospitals in December often operate at full capacity. This wasn’t going to be easy.

She gave Amy a check over and as she listened to her heart; it dropped further.

“She’s going into cardiac arrest. Time for plan B”. I will always remember those words.

Immediately I was transported to her birth 9 years ago. She had been born with no heart rate, causing a huge brain injury.

Fast forward a few hours… a lot of pacing silently, a lot of sitting feeling sick, a lot of staring emptily into the void at generic artwork on hospital walls in a waiting room. The doctor enters. “She is ventilated, intubated, and stable, do you want to come and see her?”

We entered the theater. Anaesthetists and surgeons look at us with kind eyes and explain what’s happening. “Do you have any questions?” they asked. “No” I choked out. “I just think you’re all amazing. Thank you so much.”

Eventually we are transferred to the city hospital.

I am bundled once again into a waiting room whilst they handover and insert a chest drain.

I come to learn that Amy’s lung is “consolidated”, “pleural effusion”, “a total whiteout”, “collapsed”, “filled with fluid.” “A tear in the lung tissue.”

The wait in those rooms feels like an eternity. 

I go to see her. There are more tubes and wires than ever before. I am scared to touch her. It reminds me of her being a baby. I don’t want to disrupt the nurses who so expertly manage her needs.

In spite of being in an induced coma, Amy refused to sleep! She was given so many extra boluses of sedatives. It was so distressing to see as she dystonically tried to wake and pull her breathing tube out. Her skin was puffy with fluid retention. Her breathing so mechanical and frightening to watch. 

Every night was spent absolutely exhausted but unable to sleep. 

Day by day she started to recover

The chest drain had worked. In spite of not properly resting, she had rested enough to help her lungs heal.

Fast forward to now. Amy is fully recovered. She has finished a 4 week course of antibiotics. She is adjusting back to normality.

I look at her now, so full of life; and I can’t believe she was that same person I saw in PICU attached to all of those machines.

PICU never leaves you. You move on, and slowly day to day normality sets in and now your biggest problems are back to what they previously were – gastro issues, admin, appointments, meds, seizures, lack of sleep and so on. 

I have to stop every now and then and breathe and take stock. I honestly thought she was going to die.

We still don’t know what caused this particular episode. I live in fear that it will happen again. I have become hypervigilant, paranoid, scared, desperate. But I have also learnt so much.

Not just medically, but I have learned the power of instinct, I have learned that much more support is needed for families affected by PICU/HDU admissions and traumatic encounters.

I know that in the wider scheme of things we are so lucky.

There are people who are regulars at the PICU, or that have been there for a very long time.

We were home before Christmas. And whilst things were still quite turbulent and we did return to hospital a few times; I couldn’t help but think of the other families there we left behind. The things they were having to see and hear, the uncertainty, the blind panic, the exhaustion, the hopelessness, the loneliness.

Lost souls wandering the corridor, muscles aching to the core, hungry but unable to eat, feeling selfish for every nice thing you get to do such as drink a coffee when really your child is suffering.

We are resilient, strong, amazing. Us, our children, and those that work with us to keep them alive. A huge thank you to our NHS, to RMCH, to Stepping Hill, to Dr Stannard, to NWTs, to everyone involved in saving Amy’s life. A thanks to our incredible friends and family who rallied round us doing whatever they could to soften the blow of the whole ordeal.

Please, if you are suffering with PTSD, seek help.

Your doctor, relevant social media forums, friends and family. Help and support is out there. Share your experiences, find safe ways to try and heal.

Whilst I don’t think that light ever switches off; it can dim.

I have loved the work of Jo Griffin at Affinity Hub and also her book – there are some useful resources and information available on her site, and she is a fellow firefly blogger too. Can you believe in my research of PTSD in parent carers the main things that came up were all via Firefly and Joanne?

I wish you all good health.

Being A Parent Is Hard

Being a parent is hard. Really really hard. It is an absolute privilege but let’s be honest here; it’s hard.

I have no experience of raising a neurotypical or able-bodied child. My experience of parenthood shares some parallels, but also it is vastly different.

Many of the challenges parents of neurotypical children face will eventually be outgrown (hopefully). For us it isn’t just “the terrible twos” or “establishing a good sleep routine”.

There’s no calling a babysitter when we need a break, it isn’t that simple. Now I am not for one moment underestimating the challenges that all parents face; my point here is to highlight that a lot of the things you struggle with regarding babies or toddlers, will continue into childhood, teenagehood (if that’s a word), and indeed, adulthood.

As the child gets bigger they can become stronger, louder, more dangerous to themselves and those around them.

Thankfully for us, Amy’s frustration/crying spells are significantly better than they were a few years ago, however today I am still reeling both emotionally and physically from last night’s bed time.

Amy is 8 now. She has severe quadriplegic cerebral palsy. Everyday she battles against the horrible side effects of several medications, manages extra pain to those around her, and has to make herself heard and understood without being mobile or able to speak.

I often wonder the level of isolation and frustration she may feel. Even resentment.

I am a very sensitive soul and deeply protective of Amy. I know it’s not realistic, but I want every moment of her life to be absolutely amazing, joyous and full of love. I have developed so much empathy, compassion and most importantly patience, for her “meltdowns”. (I am not sure if meltdown is the word now. Is it a crisis? Either way, a period of intense distress.)

Last night all of that went out of the window.

As with most children, they know how to push their parents’ buttons. I know I could be a little horror as a child and look back on my actions (especially as a teenager) with embarrassment and remorse. However when Amy has one of these episodes, she isn’t aware that she is pushing buttons. In that moment she is completely at the mercy of whatever her brain is putting her through.

As I was saying goodnight I could see an absolute rage wash over her. She was consumed by it.

She was hitting out, kicking, screaming, trying to rip out her hair. 

All you can do at that moment is try to keep everyone safe and keep breathing. Remind yourself that this will pass. Remind yourself that this isn’t about you, it’s about her. She’s struggling right now and needs your support. 

Eventually she was out of breath, breathing fast, retching, and had a very high heart rate.

My instincts told me to check her blood ketones and glucose as previously she has responded to ketoacidosis in a similar way, and if it was that – then it’s a medical emergency.

As I tried to calm her and check her bloods she swiped the finger pricker out of my hand and the needle gashed my hand. Blood was going everywhere. I scrambled for a tissue but didn’t want to risk her falling from her bed. 

My second attempt – she kicked the lancet out of my hand meaning a loose needle was in her bed. As I attempted to locate the missing needle she kicked me in the face causing a fat lip.

When Amy’s moods are strong her movement disorder switches it up a gear and one unfocused moment will mean a nose bleed. 

By this point I was feeling fearful, upset, and quite frankly annoyed.

I shouted at her to sleep. The anger intensified. I suppressed tears and told myself to calm down.

In the end I needed to administer chloral hydrate to sedate her. It’s a decision I don’t take lightly and I only use it in extreme situations.

For days after I feel upset and guilty about it and need constant reassurance that I had no choice and that to leave her that distressed is unfair.

This morning she woke up, perfectly happy, as if nothing had ever happened.

The relief is palpable. My beautiful happy girl is back. Morning meds kick in and she goes sleepy. I hope that smiles will return later. 

I am still carrying the stress today. I can feel it all over my body. I wish I had been calmer and quieter. I never ever shout at her. It doesn’t help a stressful situation. But I know that often this is what happens to a parent when they are pushed.

I feel terrible now. Proper Mum guilt.

I worry if this will happen forever randomly. It only happens every now and then but when it does it knocks me for six. 

I had some spare time so I managed to squash in a dog walk and a gym session. I didn’t want to do either but I needed those stress hormones to subside. I feel better now than I did earlier.

I am focusing now on staying distracted, staying positive, and working to be a better parent tonight. I told her I am sorry and told her how much I adore her. She just smiled and laughed and touched my shoulder.

I suppose the purpose of this blog is to say – it’s okay to have a wobble.

It’s okay to struggle. You’re doing your absolute best and can’t be perfect 100% of the time. Today is very much a new day and whichever Amy returns home from school today I am going to be absolutely delighted to see her.

If you are struggling with similar – please don’t suffer alone.

If your mental health is being impacted make sure you get yourself to a doctor and see what support is available.

You can only be your best you when you are looking after yourself. I know that is easier said than done, but it’s so important.

Epilepsy Awareness Month

November is epilepsy awareness month.

As I have said previously – if you or someone you live with has epilepsy you’ll probably feel like everyday is epilepsy awareness day.

I remember as a child learning about epilepsy. The prospect of it absolutely terrified me. I remember being taught first aid for if you encounter someone having a seizure.

I lived in fear of witnessing someone having a seizure and being the one responsible for keeping them safe until an ambulance came.

To outsiders, the word “seizure” is absolutely terrifying.

When your child has literally 100s of seizures a day it can feel quite normal to say “oh she can’t talk to you right now she’s just having a little seizure”.

Often when I say these words the person will recoil in horror and I’ll say oh no please don’t worry, she has lots of these ones, they’re only little ones and she’ll be fine again in a second. It sort of becomes your daily norm.

The prolonged seizures do of course still terrify me.

I am thrilled to say that since starting a hospital prescribed ketogenic diet almost 2 years ago to day, Amy hasn’t required ANY rescue medication. There was once a time where a week wouldn’t pass without us needing to administer rescue medications so this is huge progress.

Right now for us epilepsy looks like: 2 different anticonvulsants twice a day, a rescue med to break up cluster cycles, a rescue med to stop a prolonged seizure, two blood checks a day for glucose and ketones, a rescue treatment for low glucose/high ketones, regular full blood counts and clinics at the city hospital with dieticians and neurologists, making a daily 24 hour batch of keto feed to be fed into the bowel via feeding pump 24/7, contact with a local epilepsy nurse and pediatrician, close monitoring of seizure types and length of time.

It might sound a lot, but compared to a few years ago we are all so much more knowledgeable in preventing and treating any issues that can arise as a result of epilepsy.

I still don’t fully understand the ketogenic diet and how it works.

I have sort of worked out that changing how the body creates energy (from fat instead of carbs) that this somehow rejigs things in the brain? Whatever the science behind it is – I am grateful for it, and it works for us.

In spite of the keto diet Amy still has 100s of seizures a day but thankfully these are partial/focal seizures or absences. Triggers for Amy include gastro issues, mood, tiredness, feeling unwell, many things really.

Whilst currently well controlled, it’s still an unpredictable aspect of Amy’s diagnosis and for us, currently comes second to chest/respiratory issues in terms of most difficult condition to manage.

I was told in our last clinic that Amy will need to be weaned off the keto diet in 6 months. I am terrified at the prospect. I am hoping that somehow her system has had a bit of a reset and that the seizures will stay how they are and not worsen.

The thought of constant tonic clonic seizures terrifies me.

I try not to think of SUDEP (sudden unexpected death in epilepsy) and the many other awful things epilepsy can entail. But without keto or our amazing team at RMCH I am very nervous.

If the wean goes terribly there is a chance we can return to keto, but generally they don’t like people to be on it fully for more than 2 years. 

Epilepsy has taken a lot from us. It has hindered development for Amy and did cause a regression too. She didn’t have seizures until around 5 years ago.

I noticed a sudden change in her movements and behaviour. I had asked many times for an EEG to be told what she was doing didn’t sound like “typical” seizure behaviour. But parents know.

We have a gut instinct when things aren’t right, and I’d like to think by now I have acquired an almost extra sense for these things. When you’re around someone 24/7 you tend to notice even the smallest things.

One morning I walked into Amy’s room to find her blue, foaming at the mouth, and convulsing. That moment will stay with me for the rest of my life. I think about it every single day.

I was no longer under any doubt that she was having seizures.

The EEG was done, everything was confirmed, and the awful process of finding the right meds commenced. The meds can be brutal. They affect each person differently so finding the right dose and type of medicine can take a very long time.

The side effects were absolutely horrendous for a long time. There were times when a dose increase meant that for months at a time Amy would be extremely moody and distressed and I would be calling the doctors crying my eyes out asking when it would get better.

How she has suffered whilst we tried to find the right treatment plan was harrowing at times. I am so proud of what she has managed to overcome and how she perseveres daily to not let these things impact her quality of life.

I hate epilepsy everyday. With a vengeance.

I see what other families like ours go through with it, many much worse than us. And my heart aches.

I am so grateful to the keto team at Royal Manchester Children’s Hospital. We have never felt so reassured, understood, and happy with a team.

I always wish every facet of our lives were as good as our experience with them. You get the feeling that you are working together for the same outcome. Not working against them, not having to fight your corner, not having to wait on long waiting lists or beg for funding.

Help seems to always be there by email or phone and always quickly responded to. When you’re helping someone manage a lifelong and sometimes debilitating health condition, this is precisely what you need in your life. 

I live in hope for advancements in medical technology to continue, be it laser treatment, VNS surgery, cannabis oil, new medications, anything to make life easier for those living with epilepsy every day.

I don’t yet know how Amy’s epilepsy future looks, I am nervous, but I am also hopeful and determined.

Kidz to Adultz

We recently attended a disability equipment/services exhibition in Manchester called Kidz to Adultz. We have attended it every year now since Amy was born.

One of the unexpected and best things about it is the social aspect. With each year that passes, our network and community grows and becomes more interlinked. 

I bumped into a fellow Firefly blogger, charity (PEEPS – HIE) owner, and friend, mum of Heidi, and mum… Sarah Land. We were talking about the complex health parenting journey (or whatever you like to label it) and we were talking about our first visits to these exhibitions.

We reflected on our early days as parents in this world of disability.

We were still in the “wait and see” stages, not having any idea what our futures would entail.

I remember walking around the exhibition and feeling entirely overwhelmed. Surely we won’t need a wheelchair van? Why are there hospital beds with padding on them? Why is everything so medical and mechanical looking? I don’t understand any of this… maybe this isn’t for us. 

So other than to look at the Firefly stall (which by this point we already owned ALL of their stuff as it enabled us to use shopping trolleys, park swings etc) it made us feel further alienated, scared and confused.

Fast forward to today, Amy is almost 8 years old. 

Our experience here is now entirely different. We see the “hospital looking bed” and say WOW look at the colours it comes in!! We see the wheelchair vans and are impressed at all of the different ramp options and seating configurations.

Pretty much every stall here is relevant to us now… and do you know what? We don’t feel alienated, scared and confused. We feel excited – what great pieces of technology have come here today that could make our lives easier, more fun, safer etc.

Sarah said to me. “What changed for us all?” and this was a great question.

I think the answer is time.

Time is a healer. 

I remember being told many times that things would get easier. That we would adapt. That the grief will fade. I remember feeling hot with anger and trying to suppress tears when hearing this. How could anyone know that?

I never expected that we would be the ones needing ALL of the expensive medical equipment. I never thought I would be excited at a hi-lo bath, or a wheelchair accessible easel. But here we are.

We have come so far. With time has come acceptance, understanding, awareness, and so many other things.

There are still days where there are traumatic flashbacks. There are days I just want to cry and can’t understand “why us?”. There are days I wish things could be easier for us all. But we are in a different place now.

We know the future isn’t certain, and Amy has been through more in her 8 years than many will in a lifetime. We don’t take a single day for granted, not even the really difficult days. 

I’m not sure life even became any easier, I think we have adapted and became more resilient. 

Our life is still packed with appointments, admin, meds, ambulance trips, hospital admissions, the fight for services and equipment, the fear of vital services being withdrawn etc. Amy is heavier now, her equipment is larger and her health needs have increased vastly over the years; and yet all I can think about right now is when our extension/adaptation work is done on our house and she can relax her sore legs in her very own hi-lo bath. 

Life doesn’t look how we had planned, and I have learned – never plan!! What happens will happen. All you can do is hope to have your loved ones by your side supporting you along the way, be grateful for every little thing, and to cherish the happy memories you make amongst the chaos.