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.

Time to process – Complex Health parents & stress

Sometimes you can’t live in the moment. What if it’s an especially traumatic and challenging moment?

How do you recover from stressful events? How do you navigate them whilst they are happening?

Yesterday Amy was in pain with some acute skin problems. The result of this was that she was emotionally and physically distressed.

When she is distressed she rips at her hair, she pinches and kicks those around her.

She is impossible to console in those moments. All you can do is remain calm, and patient, and try your best to prevent injury.

Thankfully these moments happen less than they used to, but at the time I can feel my stress levels going up and up.

My jaw tightens and clenches, my muscles tense, and my heart rate increases.

In that moment all you can do is keep breathing, and remind yourself – this is how she communicates pain, this moment will pass.

Recently, Amy has had a few ambulances due to respiratory issues.

In those moments she is blue, struggling to breathe, retching, and looking lifeless. Adrenaline kicks in and I reposition her, check her obs, suction her, reassure her, and explain what I am doing.

I call for the ambulance. My chest is tight, my legs are weak. Outside I am calm. Internally I am a mess. Just get through this moment. The paramedics will be here soon, she will be fine, and we will all be fine.

In the ambulance my back twinges as I struggle to reposition my panicking child.

She is on oxygen and awake now, but highly distressed. Staff keep telling me to keep her upright, and I explain again that this isn’t possible with Amy.

The blue lights now are on to get us there faster. We’ll be there soon, this is temporary, this is about her, not me.

Continue to try and comfort her and stop her from injuring herself.

In the hospital I remain calm as I explain what has happened for the third, maybe fourth time.

I reel off her list of medications again, for the third, maybe fourth time. This is the process – don’t fight it. Just be patient and explain it. You’ll be home before you know it, hopefully.

Fast Forward a week.

Things are now much better health-wise. Life-threatening problems are now replaced with usual mundane daily problems like replacing faulty medical equipment, chasing meds from the hospital, and finding space to store tube feeding supplies.

We are on a nice family day out. The Autumn air is fresh, the sun is shining, Amy is in a good mood.

Immediately we are faced with “what’s wrong with her? Why is she in that chair?”.

I am grateful people ask – it’s better than staring, or ignoring. But my heart sinks a little. Why do we need to stand out? Why can’t we just have a friendly interaction that isn’t centered around Amy’s disability?

Inwardly I yearn to just be normal, to be boring even. What a novelty boring or normal is. I breathe through it and put on my friendly happy voice and explain once again that cerebral palsy is how the brain controls muscles and so on.

I make a call to chase some meds. I pray internally that the receptionist speaks kindly to me.

I sense the frustration in her voice as this is the third time I have called in a week. I remind myself to breathe and stay calm.

Don’t lose credibility and cry. “Why can’t you go to the GP for these meds?” I answer for the third time in a week.

I fight the urge to be sarcastic or emotional and explain that these meds are hospital only. I try to make polite small talk.

It goes ignored. I tell myself – maybe she’s having a really bad day or is extremely busy – don’t take it personally, don’t let it affect your day. 

In just writing this I feel myself tighten up and feel angry.

Sometimes it doesn’t feel fair to have to internalize so much sadness and frustration.

For now, in this quiet moment, I can process it all. I can take some time to enjoy a hot coffee, knowing we are home and that all is well.

I can enjoy that my phone isn’t ringing, all of my loved ones are safe and well, and I can be proud that we all made it through.

Sometimes you can’t live in the moment. Sometimes you have to endure the moment knowing that better moments are to follow.

Sometimes those moments you endured will catch up with you and eat away at you.

What do you do to deal with this?

Personally, I have anxiety medication, and counseling, and try in my spare time to get on walks and to the gym.

Exercising definitely impacts your mental health. It can lower your stress hormones and help you release feel good chemicals.

Some days I’m too fed up and exhausted for that – and that’s okay too. You have to listen to your body, and when time permits – give yourself chance to heal.

It sounds cheesy but self care really is so important. It’s harder to get in our lives as it can be so unpredictable. But any moment you can, try and do something for yourself and really savour and appreciate that moment.

If you are struggling – please go and see your GP. Talk to someone. Don’t just wallow and suffer.

Life is challenging for everyone, but when you have a child with complex health it is a constant concern over their health, and navigating the often difficult system that surrounds them.

Frustration is.

Frustration is being exhausted all day, but unable to sleep at night.

Frustration is chasing that medication for the 3rd, no, 4th time this month.

Frustration is spending 3 hours packing, only to forget something vital.

Frustration is, being desperate for a break, but when you get it, feeling guilty and unable to relax.

Frustration is, trying to retain credibility whilst holding back tears so you don’t look like you can’t cope.

Frustration is, finally being ready to go out but the beeping won’t stop.

Frustration is, finally getting the perfect spot, and then someone blocks your ramp in.

Frustration is, trying to divert your child’s gaze away from the park that has nothing for them.

Frustration is, having all of the thoughts, but not being able to put them into words.

Frustration is, only needing one kind voice, and then the secretary is rude and unhelpful.

Frustration is, knowing you know your child best, but spending every moment of the day second guessing yourself.

Frustration is, respecting the opinions of the professionals, but not feeling it is always reciprocated.

Frustration is waiting for planning permission, funding, someone else to say yes or no.

Frustration is fighting hard for the support you get, but living in fear it could be ripped away in a heartbeat.

Frustration is, finding the right meds, but then them having debilitating side effects.

Frustration is,a look of pity or judgment.

Frustration is needing some silence when the world feels like it is screaming at you.

Frustration is, millions of toilets for able bodied people, but barely anything for those who are not.

Frustration is working harder than most, yet often viewed as just a “stay at home parent.”

Frustration is adjusting to higher running costs for the house, but being unable to earn more than 30p an hour.

Frustration is spending your life on street view working out if somewhere is actually accessible because sometimes “there’s just one step” isn’t good enough.

Frustration is not being able to calm your child’s meltdown and feeling like the worst parent ever.

Frustration is your child being in pain and knowing it could be any one of 100 things and having to work through a list of guesses.

Frustration is uncertainty. Never being able to be complacent. A hospital admission could happen at any moment.

Frustration is seeing so many bad things happening to good, innocent people. Especially within our SEN community.

Frustration is knowing that money would transform our lives with equipment and adaptations but all of this being out of our control.

Frustration is not being understood by everyone not in our situation.

Frustration is having to say no to invites, but fearing one day the invites might stop.

Frustration is, knowing this list could probably go on and on, endlessly.

I accept that frustration is an inevitable part of life. I sometimes wonder how and why I was ever frustrated before being in the life I lead now.

I so often wish I had the problems I had 10 years ago compared to now.

Whilst inevitable and exhausting, frustration is a necessary evil. It spurs us on to concur another day. It lights the fire inside that keeps us fighting, advocating, and caring.

It makes me a better person. 

Recently I feel I have been at my most calm, and yet when someone blocked our van in at a park last week, I honestly felt like screaming.

I left a note on their windscreen. I worded it calmly but sternly. I carried that anger for days.

Why would they do this? Why did they park illegally? Can they not see the 10+ stickers all over the back of our van? 

These micro annoyances can accumulate and gain traction and cause us to be embittered and infuriated… but carers do not always have the emotional and physical resources to sustain this level of frustration.

I feel like over the years I have become much more resilient and much more careful in how I pick my battles.

Some battles can’t be won.

I still think there should be much heavier fines and monitoring of those abusing disabled bays and double yellow lines etc, however I am only one person.

I know my feelings are shared by so many others in the community and whilst we do what we can, sometimes the world is just ignorant and unfair.

I’d like to believe in karma and hope that one day these people will be taught a lesson whereby they regret their selfish actions.

But until then, coffee, naps where possible, and cuddles with my sweet girl who makes all of this worth it and then some

Public transport with a wheelchair & wheelchair accessible vans

Prior to having Amy, my knowledge of wheelchair-accessible vehicles was very limited (and to a degree still is).

Until you are in our situation you perhaps don’t really have cause to think about it.

I had a teacher in high school who was a wheelchair user.

I remember seeing himself transfer into the driver’s seat of his adapted car and fold his wheelchair into the back. (He was an incredible teacher by the way, in spite of all of the detentions gave me; and even taught my mum! RIP Mr Bean. Yes that was his real name). 

This was literally my only experience of disability and travel other than seeing the resource/children with additional needs on their school buses in primary school. 

We are fortunate enough to have a WAV (a wheelchair accessible vehicle). 

Here in the UK if you received the high rate mobility component of DLA or PIP you are able to apply to use that money towards a suitable vehicle.

It’s more complex than this, of course, there can be huge deposits for which you can apply for grants… and not everyone is eligible for grants.

When you first start to look into getting a WAV it’s a daunting experience. There is so much information to take in, and so much research to do.

I always said I would never drive a big car. I am an anxious driver and feel safer in a little car.

So it has been a huge obstacle to overcome agreeing we need the van.

We now realise that Amy and her equipment are growing, and her health needs have increased too meaning more supplies coming out with us.

This means our next van needs to be bigger.

I am already filled with dread at the prospect however I do feel positive that it will enable us to go on more UK holidays in just one vehicle instead of two.

Recently a friend was going to meet us in town for a special event.

She had opted to take the bus with her wheelchair-user daughter.

She waited a long time for the bus and when it eventually arrived the driver said there was no room and drove off.

He didn’t check to see if there was any other option, and he offered no empathy.

My friend was understandably upset and I was infuriated for her. The reason they couldn’t board the bus was because there was a pram on and a wheelchair already.

I have since looked into this because I thought the rule was all prams have to be folded down for wheelchair users and that wheelchairs take priority.

I have since found out that most buses only allow one wheelchair user.

I understand that this is for health and safety reasons but what if two people were friends and wheelchair users?

They have to not get the bus together? 

In my research I found the following:

“If a wheelchair space is occupied by standing passengers and luggage, you might not be able to allow a wheelchair user on the bus.”

Now I completely get it… we can’t expect people to magic up space for the wheelchair user. But LUGGAGE!!

We’ve not been able to go on a train before because of luggage in the wheelchair bay and it enrages me.

You would hope that with all of the technology at our disposal these days that buses could be designed to have seats that can fold away properly and safely to accommodate extra wheelchair users.

I don’t want to come across as self-righteous or entitled, but it honestly enrages me that people are being left out in the rain waiting for another bus hoping that this next one isn’t full to capacity… all whilst the person may be trying to manage a chronic condition.

It makes me feel that our society isn’t quite as developed as we think and that more attention needs to be paid to ensure that everyone has the same opportunity to take the bus somewhere.

I also read “Only buses that can carry 22 passengers or more have to be accessible.”

It frustrates me that companies will always do the bare minimum to meet the legal standard. (This info was taken from citizens advice)

Why can’t we do more? We have an aging population… more poorly children are surviving.. There are more wheelchair users than ever before and this is likely only to increase.

I haven’t had the courage to get the bus with Amy since our last time, which was many years ago.

The actual boarding on and off is fine, I am pleased with how buses can be lowered to help people get on, but I still feel more needs to be done to ensure no one is turned away because they have a wheelchair.

I know things have come a long way compared to the past, and I am glad progress is being made, but something about it still doesn’t sit right with me.

Have you any experiences, positive or negative, of getting the bus?

I’d be keen to know the experiences of others.

For now I remain reliant on our van, but worry that if at some point we are left needing public transport, that things could be less than ideal.

The summer holidays

Send coffee. Send chocolate. Send help (Insert other generic mum jokes here).

I would have used a lovely picture of Amy ready for her last day of school for this blog.

However, I cannot because in spite of my constant effort to be organised, I got my days mixed up, misread the term time calendar,  and actually thought tomorrow was her last day.

So as I type this I ache to my core. I have somehow managed to condense almost two days of child free errands into one day.

I have feverishly prepped meds and feeds, I have re-organised Amy’s room, I have returned phone calls that I missed whilst I was at the gym earlier, I have walked the dog, amongst many other tasks.

Excuse of course the messy bedroom pictured, I am sure we would all have much preferred the beautiful last day of school photo that will never happen now!

I don’t feel the dread many people feel in relation to school holidays.

I look forward to Amy being around lots more and seeing what adventures we can get up to. But I do dread the exhaustion that will come with it. 

I have been making a more conscious effort to get her in her walking frame more, and to hoist her more.

It’s all quite time-consuming but I know it’s the right thing to do.

The easiest thing isn’t always the right thing.

If Amy could have her way, we would spend the whole day walking (and she would have her music on the whole time or cue frantic angry hair pulling.)

Much as I love trying to get fit and getting out into nature, it’s physically very demanding.

This year more than ever, now that Amy is 8, I find myself comparing her childhood to my own.

It’s not necessarily a good thing to do, but I think it’s natural. 

It makes me realise just how much additional planning goes into things and also how non-inclusive so much of it is.

Almost every holiday club or activity day seems to be geared towards able-bodied/neurotypical children.

It’s just another thing we have to miss out on. We don’t get a choice. Every time an ad comes up on my social media for it I feel resentment knowing that there isn’t any point even enquiring.

Why is it that people who need the help the most are the ones left without? Why don’t our children get the same opportunities as their peers?

I have mentioned to people before how in the school holidays we struggle to get basic day to day jobs done.

Those not in our situation have sometimes retorted “oh well, jobs can wait! There’s always tomorrow!”

But sadly no. Constant daily soiled bedding, management of tube sites/maintaining hygiene, preparing meds, medical interventions etc don’t all take a day off.

Sure, some of those things probably could wait a little, but realistically no. Our house has many 100s of invisible cogs turning. If one cog gets jammed then everything comes to a halt, or worse. 

Unfortunately for us, independent play is not possible. My daughter’s level of enjoyment and activity is dictated solely around what those around her do for her.

It’s a lot of pressure but I do feel an almost constant guilt that what I am doing isn’t enough.

I also feel bad that sometimes I really would just like to rest.

As a child I was great at independent play, I was (and still am) quite introverted and would happily draw all day, read, or colour in. I would watch films (sometimes the same video over and over!) and whilst I know I will have been hard work for those caring for me, I know that a lot of the time I was quite easy in some respects.

So really comparing doesn’t work. Amy dislikes crafts, doesn’t enjoy being read to, and isn’t really interested in teddies.

Even if she was, she would still need someone there to facilitate it all. I worry sometimes she must be frustrated, or bored with me.

It’s a constant journey mentally.

Some of our days out go spectacularly well, others a disaster. I guess it’s the same for any family.

But I do find that sometimes if Amy really dislikes something, it puts me off going again.

For example, the last time we went to an aquarium she had a particularly bad episode of irritability.

I am not sure if it was a sensory issue as the place was busy, that she was in pain, or that she was bored.

Whatever was going on, she was inconsolable.

It was a scramble to get her back out of the building as it was so busy. It was disheartening because once again she had had a bad time doing something everyone around her loved.

The same happens at the cinema and in certain coffee shops. I know that part of it is lighting and space.

I have noticed over the years and can now enter somewhere and know whether or not she is likely to become distressed.

Getting the balance between trying new things and sticking to what we know is hard.

We want to broaden Amy’s horizons and give her every chance to enjoy so many things.

Equally,  we have to conserve energy and carefully choose what to do.

Otherwise, we risk causing all of us mental health issues, wasting money, petrol and energy.

Sometimes she will surprise us and on the day thoroughly enjoy something new – or she may enjoy something she usually dislikes whilst with carers.

It seems many stars have to align for the best days… lack of pain, not too tired, not too many seizures, correct activity at the right time of day, suitable music/toys etc.

This year I am compiling a list of things to do, and places we would like to go.

Obviously, this is always subject to change. Lack of sleep, illness, mood, many things could affect this. Then of course, fuel costs, prices for things, changing facilities, weather and so on too. 

Amy likes lots of position changes and activity changes.

This can all become very tiring, but I am hoping to try to eat sensibly, stay hydrated, and as rested as can be so that I can be the mum she needs me to be.

It is rare for her to want a “lazy day”, there is never an option to just pop a film on etc and I have accepted this. 

What are you doing with your school holidays? Any tips to get through?

Wishing everyone all the best.