Sweet Girl, I Hope You Dance

Have you ever heard an old song playing that just tugged at your heart and made the tears flow?  Were you ever driving somewhere as it came on the radio and you listened, knowing you should probably just switch the channel, before becoming a total mess?  I have.  Words can take on a different meaning and they find a way of grabbing you tightly by the emotions, when you’re the parent of a child with complex special needs.  There’s one line, one single, solitary song lyric that sends me into an ugly sob-fest, every single time.

“And when you get the choice to sit it out or dance, I hope you dance.”

I’ve sat in the audience at many dance recitals.  Over the years, I’ve proudly watched my niece, a talented dancer, take command of the stage with grace and elegance.  When the time comes for the younger children to perform, a lump always forms in my throat.  Some of the tiny dancers, years younger than my eight-year old daughter, scan the crowd, seeking the reassurance of their mothers.  Some watch their instructor and attentively follow along, while others fiercely assert their independence by doing their own thing.

With my own daughter being unable to walk independently, and predominantly relying on the use of her wheelchair, it’s always a reminder of something she’s not been given a choice to do.  She’s always had to sit it out.  Time and time again, I find myself blinking back tears and thinking to myself, “It’s not fair that Ryleigh can’t do that.”  It’s HARD to observe children taking part in something that your own child is unable to do.  My daughter is completely fascinated by music. She loves to clap and nod her head along with the beat.  I bet if she were given the choice, she’d love to dance.

The art of dance is a universal language.

Everyone should be able to feel the joy of moving their body to music, despite any physical or intellectual disabilities.  Having additional needs shouldn’t take away anyone’s chance to participate.  Thankfully, our daughter’s Physical Therapist and her colleague had that precise vision.  Today, thanks to the heart and dedication of these thoughtful instructors, I had the privilege to sign my daughter up for an all-inclusive dance class! No one is turned away.  EVERYONE is welcome.  She will have the opportunity to be included, as this class caters to children of ALL abilities. She’ll even have her very own “buddy” to help her, every step of the way!  We’ll show up with all her gear; her walker and orthotic leg braces in tow.  She’ll have all the tools that she needs to help her live this occasion up to the fullest!

I don’t know how she’ll react to being on a stage, with an audience, taking part in a performance.  I will be right there, to rescue her, if needed.  No matter what, she will get her well-deserved chance.  If she doesn’t love it, I won’t force her to stay.  If she would rather sit it out, that’s okay by me.  For once, she will have the CHOICE.  Watching her from the audience, seeing her dance, is something I have always dreamt of.  I’m excited for her to embrace this opportunity.  I’m elated to see her experience such a gift.  Sweet girl, I hope you dance.

The Power of a Video Call

Of all the experiences I thought 2020 might bring, altering my son’s various pieces of equipment while being assisted over facetime by his lovely physio is not something I expected. However, 8 weeks since he was last in school and a fairly impressive growth spurt have rendered this necessary… the Dude is growing like a weed (as 9 year old boys have a tendency to) and although his wheelchair is easy enough to tweak, his standing frame is a different matter…

During life pre-covid, this would have been a simple enough task – a quick call to Ruth (his physio), followed by a home visit, a few tweaks with various allan keys/spanners and within a few minutes the stander would once again be fitted perfectly to Sam. Due to the severity of Sam’s health issues he is currently ‘shielded’; in other words, he’s at such high risk from covid19, that he has to be fully isolated from other people.

As he relies on us for his 24/7 care this also means that WE also have to be fully isolated. You don’t realise how many people you usually interact with in an average week until you CAN’T interact with them.

And that includes the people we rely on to support Sam, like physiotherapists. I really miss seeing his usual care team, chatting to his school office staff as I pass on appointment details, and all the mundanity that is now missing from our lives. Thank goodness for technology allowing us to video call. I swear, by the end of this I will have gained an enormous number of new IT skills.

I never really appreciated the power of video calling before; over the last 2 months it has allowed Sam to ‘see’ his grandparents, school friends, teachers (who are going above and beyond right now for these children) and has allowed me to continue doing my job as a lecturer. It has now also shown its use in Sam’s day to day care; without the equipment that helps him daily Sam’s life would be a lot poorer.

It may not be the ideal, but for the moment it is enough.


We’re starting a new journey. It’s much like the journey we started twelve years ago, only this time we, his parents, are a lot less ”green” around the whole process.

Ethan is to begin his journey into adulthood services.

Adulthood – ”The state or condition of being fully grown or mature”

Adulthood and Ethan were never really discussed with us throughout Ethans life.

The reason being, that most children with Ethans condition (Hunter Syndrome) rarely see adulthood. As Ethan aged and his abilities slowly declined, doctors began to talk about his possible teen years and what they could look like.

They were right about some of his teen years but there was a lot they didn’t know and only learned as we, along with Ethan went through those teen years.

The teen years were not kind to Ethan. They are what I would now call, the years that took the most from Ethan and us as a family.

I remember when Ethan was younger, before he reached the teen years.

He was wild. He was a four-foot whirlwind who never saw danger and only stopped when he fell. He’d ask me to look at his cut and tell him if a ’Freddie’ was needed. A ’Freddie’  was the name the nurses gave the injections Ethan regularly injured.

Ethan always ran like he knew it would be something he’d only be able to do for a limited time.

That has always struck me, when I think back to those early years–he’d run through fields, paths, shopping isles and roads like it was a gift to be able to do it.

He would learn new words as quickly as he mislaid them.

He’d understand very basic communication and I remember so clearly the day I asked him to bring me in his shoes and his bag. He was gone ten minutes but back he came with both items and a huge smile ”I did it mom. Tweat now?”.

I adored the way he mispronounced words and how he never seemed to mispronounce curse words until much later in his life.

Yet, he exhausted me.

There was no off switch.

If I brought him somewhere outside of our comfort zone, I spent a lot of that time apologising or explaining why Ethan did what he did to that kid or that adult.

Sleep was as foreign to Ethan as this social distancing was to all of us a few months back.

If Ethan don’t want to do something there was nothing I nor God himself could have done to get him to do it – most of these types of things included; haircuts, bathing, brushing teeth, leaving hearing aids in, refraining from biting anyone, not cursing at priests, teachers, specialists, little kids (I had to pick my battles, often!) and so much more that only now, looking back, I wonder how did we get through those early years with all those behaviour issues?

Back then I wished for the quieter years the doctor had assured us would come.

By the teens Ethan was quieter but not like I had expected.

Sure, he slept much better, (most of the time) but he began to try his hardest to speak for only incoherent shouts to erupt from his mouth. This left Ethan with an anger we had never seen before.

He was no longer the affectionate little boy he once was.

He became less and less interested in us and the world around him.

Doctors told us it was a mixture of hormones and the syndrome affecting his brain. They assured us the anger we were seeing would eventually taper off and more than likely take the last of Ethans speech, his ability to walk and even his ability to swallow.

Ethan is 18 and is classed as an adult.

Ethan no longer walks unaided. He no longer feeds himself and has often had to be tube fed due to behavioural issues and ill health. He no longer speaks. He spends most of his bad days shouting, hitting us and himself. He doesn’t sleep for days at a time. He finds joy in very little on these bad days and sadly since this lockdown, these bad days are more common than good days.

After this lockdown, Ethan will be classed as an adult and will have to go into adult services and when in hospital, he will have to be treated as an adult.

Ethan is still four foot nothing, wearing aged 11 clothes and is often mistaken for a child of 10 years of age.

I understand that most adults with disabilities need their independence and need to move onto adult services as they make their own path in this life; I can’t help but wonder about adults like Ethan, the forever child, trapped in a body and mind which constantly reverts backwards rather than forward?

Alas, we have no choice but to face this transition into adulthood with Ethan the only way we know how; with a deep breath, notebooks(of who is who), calmness on the outside while panicking inside, with gratitude that our son is seeing adulthood unlike so many boys before him, with a bucket load of hope and of course our sense of humour especially when we met the doctor that stares at us blankly when we say the words – Hunter Syndrome.

My hope right now for Ethan, is that the transition into his new adult day service and respite centre goes well, as he has not had the transition path, he should have had due to the coronavirus, like hundreds of young people all over our island.

On Feeling Guilty for Not Working

I’m a very ordinary person, mother and wife. My little girl now 9 year old has complex health and educational needs stemming from her prematurity. As she requires 1:1 care, I haven’t been able to work full-time. For the last 3 years I’ve been working as and when I’m able, very part-time. Just enough to keep my skills up to date and my registration valid.

I’m a nurse.

I love caring for my patients and being a nurse.  I love being on the ward and the clinical responsibilities and people’s lives you are touching and afforded the chance to truly make a difference, however small. It is a great privilege. In normal times, I usually take shifts during the day when the girls are at school.

During this COVID-19 pandemic however, I’ve had to make the difficult choice to not accept shifts. Well mainly. I did have what turned out to be only one week in a local hospital. Some nurses were brought in to support the ICU in a COVID IV preparation room with Aseptics.

However, due to limited demand for the drugs for COVID patients, and as I’m only a ‘Bank’ nurse with the Trust (so no fixed contract) I was dropped after a week with some of the other nurses. We expected to have maybe three months in the prep room! I’ll admit is was REALLY nice to get out of the house, get on the motorway, get my ID badge out, and scrubs on! And feel like I was helping the NHS…

I accepted this position as I really wanted to do something clinical, as a nurse, to help during this crisis, without compromising the health of my daughter at home. This is the only non-patient contact job that’s come up for me so far in my Trust.

We are being very cautious and shielding Brielle as she has chronic lung disease and asthma requiring inhalers twice a day, and usually requiring oxygen support if she gets a bad chest infection.

So, you see I’ve been having much guilt staying at home, in comfort and safety, while many of my fellow nurses and other healthcare professionals are on the ‘front line’. Every Thursday night we Clap for the Carers, and I feel bad that I’m not doing ‘my part’.

But where do you draw the line between necessary and unnecessary risks? How can you balance your obligations and role as a mother foremost, but also as a nurse during the biggest health crisis this nation has faced?

I do not know. I wish I had the answers.

Four isn’t just a Number

Sawyer and Quinn turned four on the 16th of May. It’s easy as a parent to reflect on the past when your child has another birthday. I found myself looking back through photos and videos and remembered a conversation I had with the neurologist shortly after Sawyer was diagnosed with infantile spasms.

As we sat in the room looking at the scans she explained that Sawyer was having seizures and how we would control them. She also explained the brain damage that he had and what to expect. She asked if anyone had explained to us before the level of damage he has and what kids with injuries like his typically are like.

We may have been told but all we remembered were the NICU doctors explaining that he would have some sort of cerebral palsy and not knowing the future.

We did not remember anyone explaining to us the level of injury or what we could expect.

She explained that Sawyer had severe damage to both his right and left hemispheres. She said what she often sees is children with this level of brain injury do not develop cognitively or physically past 6 months of age. I want to say that we cried and we were devastated but in that moment we were just pushing for his survival and to get past the seizures.

This was just another diagnosis for us.

In fact, I didn’t remember we were told this until 3 days ago. I don’t know if this was God’s way of protecting and comforting me or my way of coping but either way, I know faith had a role.

We have never let that number stand in our way or define Sawyer.

He has continued to grow and develop, and we are finding how intelligent he is. He had a trial with an eye gaze board which tracks his eyes and speaks for him. Sawyer was able to identify everyone around him and begin telling us things he wanted.

We always knew how smart he was but this was proof for all of us. Sawyer still isn’t walking but he is taking steps in his gait trainer. He rides his bike by himself and on his birthday, he figured out how to control his very own jeep, with a parent steering of course (HAHA!).

The one thing our family lives by is “never set limits”. Believing your child can reach their absolute potential and giving them the tools to do so is one of the most important jobs as a parent that we have.

A Carer for my Own Child

At what point does your role change from mum to carer? When does that start? When your child is born? When they are diagnosed? When their condition starts to seem to get worse and you have to leave your job…

If you’re looking for an answer, then unfortunately I can’t give it as it’s something I’m wondering and searching for the answer myself. It seems strange to say you’re a carer when it’s your own child isn’t it? I mean, you would care for your child with or without disability so what makes me so special that I have to be classed as something other than a mum!

My son is 4 now and I still become really awkward and a bit nervous (for some reason, as if people will judge me!?) when I have to say that I’m “classed as a carer for my own child”.

I have 2 children, so it seems even harder to say that when I love them and care for them both equally – although admittedly I do probably spend slightly more time on my son who has quadriplegic cerebral palsy but not because I love him anymore, because he needs it. Hang on.. I think I’ve just found my answer…

They need us – more!

We are called carers because yes, although we are still mums and would do anything for our children no matter what, we do MORE for our children because they have more needs. They need us to be their voice sometimes, to know exactly how they are feeling and how to react when something doesn’t go right for them, they need us to administer medicine, to organise and arrange appointments, to be on guard for any sudden changes, to even be their legs!

You’re still a mum, but by saying you’re a carer too it can open up opportunities for help. We aren’t superhero’s, we weren’t “chosen because we are special and patient people” we aren’t better than anyone else, but we do everything we can to ensure our children are happy and cared for.

That’s why we are carers.

Why It’s Not Time to Go Back to School

The headlines are full of the news that schools, particularly primary schools in England, are being prepared to open for years Reception, 1 and 6 from Monday 1st June, if possible. That’s just over two weeks away. Pupils in secondary education who are taking exams next year may ‘get at least some time with their teachers before the holidays’.

Many parents, especially those who are now being encouraged to return to work, are keen for their children to return, while many more are concerned about the safety of their children and their families, as well as school staff.

The Daily Mail ran a front page story with the headline ‘Let Our Teachers Be Heroes’, and condemning teaching unions for questioning the plans to re-open schools more than they currently are.

So what is for the best? How can difficult decisions be made that are reflecting medical and educational wisdom, which may be different to political or editorial ideology? Here’s three reasons why I firmly believe that schools should not re-open to more pupils on 1st June, particularly to Reception and Yr1, or indeed at all until the safety and welfare of pupils and staff can be more confidently assured.

Have you ever spent time with a classroom of 5-year olds?

Young children are great, they have inquisitive, questioning minds, they love to find out things and to have fun learning. But they have absolutely no idea of social distancing, personal space, or in most cases personal hygiene. My wife works in primary education and most Reception and Yr1 classes at any time of the year will be a mix of snotty noses, sticky fingers, grazed knees and tears. Some of them are still not toilet trained when they reach school.

Staff in these year groups become ‘Mum’ or ‘Dad’ while these children are in school, and are regularly having to comfort them, pick them up, deal with a million different things that inevitably bring them near to the children they are supporting.

Add into this mix that 1-in-5 children have additional or special needs, with the added care needs that this brings, and the idea of this all happening by spreading out across lots of smaller classes of 15 is so laughable as to be the stuff of farce.

The Government website (see link later in this blog), encourages schools to, for example, ‘promote regular hand washing for 20 seconds with running water and soap or use of sanitiser and ensuring good respiratory hygiene by promoting the catch it, bin it, kill it approach.’ Great words, but have you ever seen a 5-year-old wash their hands? Or seen what happens when they sneeze and use their sleeve as a tissue before anyone can stop them? Have these people ever spent time with a classroom of 5-year-olds?

Schools do not have PPE

Remember that schools have been partially open throughout, with provision being offered for children of key workers. A small number of children are attending each school, with numbers varying but in my local primary it’s around 25 a day.

None of the staff have PPE. None of the pupils do either. The Government is advising us all to wear a mask when we go to the supermarket, or use public transport, for example, but expect school staff to go unprotected and see children potentially exposed too.

If care workers and the NHS are struggling so badly to get adequate supplies of PPE, and with the general population now clamouring to buy up masks and gloves to go shopping, what hope have schools got of trying to protect their staff and pupils.

And while Yr6 pupils can typically (but not in every case) get to school on their own, for Reception and Yr1 pupils to attend will mean an adult taking them, resulting in crowds gathering at the school gates in the morning and afternoon. Social distancing? I don’t think so.

It’s not just about the kids

One of the main drivers behind trying to increase the number of children going back to school is the scientific advice that, according to the Government website, states that;

‘there is high scientific confidence that children of all ages have less severe symptoms than adults if they contract coronavirus and there is moderately high scientific confidence that younger children are less likely to become unwell if infected with coronavirus’ (https://www.gov.uk/government/publications/closure-of-educational-settings-information-for-parents-and-carers/reopening-schools-and-other-educational-settings-from-1-june)

But what this interpretation of the advice fails to do is think about what happens when these allegedly a-symptomatic or mild-symptom children get home, interact with their family members, spread the virus on to them. What if they are vulnerable, or are in turn supporting relatives who are elderly or have underlying health conditions? While we may be past the first peak of the virus, there is every chance that there will be more peaks to endure, and opening schools more could be the source of one of them with children being the super spreaders. There is also growing awareness of children being severely adversely affected by an inflammatory disease linked to coronavirus and similar to Kawasaki disease.

And is the driver for this really just educational, or is it economic too… Are decisions being made only with our children’s welfare and the welfare of school staff in mind, or is the desire to boost business by getting people back to work part of this thinking?

There are many reasons why, hard though it is, we have to tough it out for a bit longer before our schools open more. I recognise how hard it is for parents, especially parents with children with high care needs, I don’t write as ‘The Additional Needs Blogfather’ for no reason and we have our own son with additional needs at home and desperate to get out and back to school again, but the risks are too high.

I also realise that some children are being identified as at risk due to lockdown; at risk from abuse and neglect, at risk from mental health issues, at risk from a lack of good quality food and exercise, at risk from not receiving any education at home. These risks are real and I recognise them, but herding children back into school shouldn’t be the only answer to these issues, there should be a wider plan involving social services, remote learning and local healthcare provision for a start. The alternative of a return to school is just too high a risk, hard though that is to balance.

I for one would rather struggle on as we are, playing our part in keeping families and school staff safe, for a while longer, than risk the terrible consequences of a return to school kick-starting a second Coronavirus peak. I don’t want the ‘Heroes’ mentioned by the Daily Mail to be dead ones.

Stay safe,


Image rights: Header © PA Images, Photo of Clare and James © Mark Arnold, PPE © Jon Super/AP, Front page of Daily Mail © Daily Mail

It’s Heavy

I remember clearly the first time the weight of the responsibility of being a parent, hit me full force. It was on our way to the first hospital appointment seeking answers.

It was the most overwhelming and frightening feeling. What an immensely important duty to fulfil.

I instantly doubted myself and my ability. However, those apprehensive feelings disappeared the moment I was face to face with a medical professional.

I was my child’s voice, I knew her, knew her better than anyone. I knew, something wasn’t right but being a first-time parent to two babies. I was out of my depth. I was naive and took their first explanation as gospel.

It wasn’t the answer.

Though initially knocked back, my confidence in preserving grew. I would not back down if I knew what they were proposing was wrong. We got answers, so many answers along the way. But not all told our warriors story. We pushed further and still do.

When you then start to add in the hoops you need to jump through to get support in the form of therapies and equipment. That weight on your shoulders grows heavier still.

The constant liaising with a large medical team, appointments and prescriptions. Not to mention the complaints and chasing up of reports and assessments. The weight is ever increasing and at times it feels as though it may crush your very soul.

It’s in those moments, the ones where it all becomes too much. Where you have to allow yourself a wobble. Let the tears flow, punch a pillow, eat a whole cake, listen to angry and then sad music. Release that pent-up emotion. Whatever makes you feel more you, not the parent bearing all the pressure.

A little self-care goes a long way.

Sometimes a hot shower and cry will do. Other times days have come and gone before I can regain the mental strength needed.

Only then are you ready to put that heavy, heavy cloak back on. To start again with a slightly clearer head and sometimes a new focus or perspective.

To all my fellow cloak wearers, I know that weight, I know that fear and that relentlessness. You are not alone.

Therapy and Social Distancing

Therapy is something that has become an integral part of our lives since our daughter’s birth.

We see a physical, speech, and occupational therapist weekly. So it has been so unbelievably odd not having easy access to our therapy team throughout this time of social distancing.

Self-motivating is something I absolutely struggle with.

Keeping up with our normal routine has been a challenge when we are not on the strict schedule we have become so accustomed to. It is easy to get in the habit of just existing for a moment, but the fear of regression is ever present.

I cannot speak for every special needs parent, but getting our daughter to participate in therapy is always an uphill battle. I feel like she is capable of so much, but is so incredibly stubborn. To be fair she gets it honest. It’s so easy to push it to the back burner when it can be so frustrating. Having scheduled therapy sessions are not only informative, but for us it’s incredibly important in keeping us accountable.

I’ve done everything I can to maintain her routine, but it’s hard when our previous routine is no longer existent. Prior to this, she kept a pretty full schedule. I felt like a toddler secretary; constantly trying to juggle between physicians, therapist, and equipment providers. A good portion of my week was spent scheduling appointments. Now that our calendar is completely empty,  it’s hard to maintain discipline in the therapy department.

Emotions are running high right now so it’s easy to struggle with guilt throughout this. I feel like overall I have kept up with things, but on those days when I just don’t feel up to it I am left with an incredible amount of guilt. It’s not realistic, but in the mind of someone who struggles with anxiety, it feels like anything you do (or don’t do) could have a drastic effect on your child’s future or well-being. I understand how misguided that is, but sometimes it’s hard not to feel that way.

I cannot wait to get back to some semblance of what we had just a few months ago.

In the meantime we are taking advantage of all the teletherapies that are available to us to maintain all of the progress we have made. I’m trying to keep things in perspective. Hopefully things will return back to our “normal” soon, and we can resume our doctor and therapy visits. I’m trying to allow myself this opportunity to relax, and take this moment to breath.