Burned Out

Being a medical parent is an exhausting experience to say the least. The easiest way I know how to explain it to people outside of our community is that it is like raising a newborn indefinitely. A lot of sleepless nights, anxiety, and round the clock care.

The mental exhaustion can be a lot sometimes.

I am often told “special parents get special children” but I’d be lying if I did not say that it feels like they were just saying “you got this” when in reality a lot of us really don’t “got this”. Reassurance can be great, but sometimes it can be difficult to receive when you are struggling to keep your head above water.

As of late sleep (or lack the there of) has been a real wrench thrown into our daily lives. It’s something I have seen to be a common issue amongst other kids in our community, but until recently we have been fortunate not to be burdened by it. Suddenly our daughter’s sleep patterns have become completely erratic, and the entire family feels burned out. We now seem to drag through our days in a complete fog.

Sleep deprivation can be particularly unwelcomed when you are already balancing a loaded therapy schedule; not to mention all of the other needs a medically complex child requires. It’s hard to motivate yourself through the day on an empty tank. Also, the summer of 2020 has left us without a lot of our support team that has helped carry us through times like this.

It can be incredibly difficult, because I am my daughter’s every move.

If she is playing it is because I have carefully positioned and repositioned her to be able to interact with her toys. She is fed through a surgically implanted tube in her stomach (gtube) so every ounce of nutrition she receives is through frequent and time-consuming feedings. A parent of a medically complex child cannot check out because they are tired. It is a not a luxury we are afforded.

As with a lot of things, the hard times come with an ebb and flow. There are certainly more good times than bad. I write this in the midst of sleepless nights, but we have been here before. I know we will see the other side of this (hopefully sooner than later) and return to our normal routine. Until then may the coffee gods ever be in our favor.

Special Needs Dads and The Self-Care Challenge

Special Needs Dads (Pater Specialibus Necessitates) are an interesting breed; I should know, I am one, and one of many ‘hats’ I wear is that of Founder of ‘The Dads’ Fire Circle’ (https://thedadsfirecircle.com), a place for Special Needs Dads to gather.

Now, Special Needs Dads come in all kinds; there are the Dads that are able to be involved in their child’s life full-time, Dads that work away from the home but put in time with their children when they are back, Dads who may only see or have access to their children every now and then, as well as Dads who, for all sorts of reasons, are no longer on the scene.

What I’ve noticed in many cases where Dads are involved with their special needs children a lot, is that these Dads will try to be the strong one. The one who keeps going. The one who holds it all together. Now that in no way underestimates the amazing Special Needs Mums out there, many of whom really are the strong ones holding it all together, especially if they are a lone parent, but some Special Needs Dads can have a mindset that is all about holding how they are feeling in, and keeping on going even when they are empty.

The thing is, though, that keeping on going when you are empty doesn’t really work long-term does it? Have you ever been driving a car when the red warning light comes on to tell you that you are low on fuel? I have a habit of just seeing that as a casual ‘first alert’ and carrying on, knowing there’s probably another 30-40 miles of petrol in the tank at least. My wife says that I drive on petrol, then on fumes, then on prayers. I have literally rolled onto a petrol station forecourt as my car has stopped… twice. I’ve got away with it… so far.

It’s a bit like Special Needs Dads who keep on going, ignore the warning signs, think they are fine, right up to the point where the engine stops. And for some, it’s not a convenient stop like I’ve had with my car, it can be a physical or mental breakdown that can be very serious indeed. Some never fully come back from it.

Maybe you are reading this and thinking… “Hmm, that could be me.” Or maybe you are reading this and thinking… “Hmm, that’s my partner.” Either way, I want to set the guys out there, the Special Needs Dads, a self-care challenge (hey, if being strong and holding it all together is your thing, you’ll probably love a challenge!) And like any good challenge, it comes in three parts!

Part 1 – Think

Start to think about self-care. Just letting the words “self-care” circulate in your mind for a while will be a good prompt to think about how much you invest in self-care at the moment. For once, be honest with yourself; on a scale of 1-5 where 1 is ‘Endlessly Exhausted’ and 5 is ‘Pampered Prince’, where are you? I’m speaking to a lot of 1’s and 2’s here, aren’t I?

Part 2 – Act

So, if you’re a 1 or a 2, what are you going to do about it? Just keep going until the engine stops? What good are you to your family then? You need to maintain your ‘engine’ if it’s going to keep running (OK, enough of the motoring metaphors, with the ‘challenges’ this risks turning into Top Gear!) What does it look like for you to be able to spend some time recharging? Is there a hobby you used to love but have let slip? Did you used to do some sport or exercise but have fallen out of shape? When was the last time you went out for a beer and a catch-up with a mate? The guys in ‘The Dads’ Fire Circle’ have been talking about this stuff recently, and sharing what they have been doing to get some self-care going.

Is it easy to get back into good habits? No, it takes commitment, it takes willpower, it takes teamwork with partners, family, friends, support networks, to free up a bit of time. If your response is to sigh and say “I can’t do this, I haven’t got the time/energy/strength, I don’t have the support” then you are almost on empty, you’re a 1 or 2 on the scale, and you might not have many chances left to sort this out. It’s time to act.

Part 3 – Share

When you’ve done some ‘thinking’ and done some ‘acting’, share about it. If you use social media, post about what you’ve been doing; if you speak to other families, tell them about the changes you’ve made. One of the myths out there is that Special Needs Dads don’t get to do self-care; we can bust that myth for others by sharing what we are doing.

For me, some favourite self-care time is using my hands, restoring things (don’t worry, I’m not going back to motoring metaphors again!). Over the past few weeks I’ve carved out some time to restore big things (including an old wooden front door), and small things (including my Grandad’s old wood brace/drill, see the photo with this article). I’ve constructed a mini wildlife pond that is now home to several frogs; I get endless joy from watching them hopping and swimming around in it, knowing that a few weeks ago it wasn’t there.

I’ve shared all of this on social media and it’s been really encouraging to see the response, including from other Special Needs Dads who have been sharing what they have been up to as well! Some of what I’ve been up to, and what other Dads have been up to, has involved their children too; it doesn’t have to be entirely solo.

So, Special Needs Dads, are you up for my three-part challenge? I hope so, and if you do ‘think’ and ‘act’ then when you ‘share’ why not also share with The Dads Fire Circle too? Our website was earlier in this article, but you can find us on Facebook at https://www.facebook.com/groups/thedadsfirecircle  I would love to see what self-care you’ve been up to. Maybe I’ll get some tips back from you!

Take care (literally!)

Let’s Talk about Hydrocephalus

As we are in September (how’d that happen?!) it’s hydrocephalus awareness month! I’ve decided to do a blog on this to try my hardest to help anyone who’s in the position we were six years ago.

We found out at our 19week anomaly scan that one of our triplets was going to be born with spina bifida, a condition closely associated with hydrocephalus. We heard things like “lemon shaped brain”, “increased ventricles”, “myelomeningocele” and made a conscious decision NOT to google these. Of course, that went right out the window as I sat up late one night in tears and the lure of Dr. Google was too strong. The literature was terrifying, even for me as a trained nurse.

So I’m just going to dive right in here with some of the questions I had when we found out about Jacob (who, by the way, is almost six and most definitely NOT defined by hydro!).

What exactly IS hydrocephalus?!

Essentially, it’s what used to be called “water on the brain” and is caused by cerebrospinal fluid (CSF) building up within the chambers (ventricles) of the brain. In a baby, the joints in the skull are less fixed so there is a bit of “wiggle room” for the ventricles to expand beyond what would be normal because the skull can move. This means they will often use “head circumference” measurements as a way to monitor whether hydrocephalus is worsening in a baby.

How is it cured?

Let me be quite blunt about this. Hydrocephalus cannot (currently) be cured but is instead managed through a few different methods. I’m not a neurosurgeon, although we are very lucky to have a brilliant one for Jacob. He was actually, quite randomly, on “The Island with Bear Grylls”! Anyway, famous doctor aside, I can only talk about what treatment they offered to Jacob. He has a Ventriculoperitoneal Shunt in situ, which is quite a mouthful so usually shortened to VP shunt.

There is a catheter (hollow tube) going from his ventricles to a valve/reservoir which is essentially a little hollow disc. There is then a longer catheter that runs down the side of the neck and down into the abdomen. The fluid goes from the over-filled ventricles (which causes pressure on delicate brain tissue) down the tubing into the abdomen and is then harmlessly reabsorbed. Voila! Perfect solution right?! Not always.

What complications can occur with shunts?

I remember Jacob’s neurosurgeon telling us that shunts can be unpredictable and misbehave. This has proved true for us, unfortunately. Jacob is on his sixth shunt. Why? Because the tubing can become blocked, which then causes the ventricles to fill with CSF and compress the brain within the rigid skull. There is a huge range of symptoms that can occur with a blockage, although Jacob has presented quite differently with all of his.

The best advice I have got is to be your child’s strongest advocate. We know him best, we know when he isn’t right. As his neurosurgeon has said, we’ll get it wrong at times and so might they…but when the whole team works together the aim is to communicate potential issues to keep him safe. Sadly, the only way to fix a malfunction is to perform neurosurgery, which there really is no way to “soften”. There are no words to describe the pain of handing your baby/child to a surgeon to cut into their head.

What other difficulties might a child with hydrocephalus have?

This question has a huge answer really. There would be no way of describing this in a blog, and honestly it is probably what has shocked me the most as the years have gone on. Jacob has several difficulties associated with his hydrocephalus despite it being well controlled most of the time. For example, he displays some behaviours that could be seen as “challenging”, such as hitting out, throwing, task avoidance, refusal to engage and so on. The biggest hurdle we face is epilepsy, which is more common with hydrocephalus.

So…if you get the diagnosis that your child has hydrocephalus, please know that there is HOPE. Use all the support you can get (Shine is an excellent charity, please contact them as soon as you can!) and don’t be ashamed to admit when it all becomes too much. It’s so true what I have read before…no doctors or diagnosis will ever define the love you feel for your baby.

Life may be different to what you’d expected, but as Jacob now says to anyone who’ll listen, “Why fit in when you were born to stand out?” (Dr. Seuss!).

Acceptance Comes With Time

Acceptance is something you have to get used to using when you’re a special needs parent.

Sometimes it’s acceptance of good things and sometimes it’s acceptance for things you can’t control and you just accept that it happens to your family.

I can still remember when Ethan got his first wheelchair. He’d been in just a normal pushchair until then but it wasn’t supportive enough and he needed help with his posture. I went to that appointment thinking maybe he will just get a pushchair that’s more supportive.

I can clearly recall that I didn’t want him to have a chair that made him stand out. People already looked at the child who didn’t walk or talk. When they showed me the rigid wheelchair that he would have, that was big and bulky, it was exactly what I didn’t want him to have.

After an extensive assessment I realised just how disabled my child was.

He desperately needed the support this wheelchair could provide. I cried. It wasn’t what I wanted. It was a real wheelchair. It would stand out and everyone would stare.

After a hug from the physiotherapist I then ACCEPTED that things were different but it’s OK. This was the start of me accepting how disabled Ethan was and how much help and support he would need for the rest of his life.

Ethan is now going back to that first wheelchair style that he ever had. This time I feel OK! Infact I pushed for it. It’s weird that as time goes on you accept that it doesn’t matter what people think. It doesn’t matter who stares, people will stare whether there’s a wheelchair or not.

All that matters is that Ethan is comfortable and he’s having the best wheelchair for his body and posture. I’ve also let Ethan have full reign on the colour he wants! I always give Ethan a choice and he always chooses pink or purple!

I always talk him into choosing a different colour. One he won’t stand out with. This time I thought, no why shouldn’t he have a purple wheelchair, so he is! Without fail he chose a purple chair! He was so happy!

So here’s to acceptance of my gorgeous boy. People can stare all they like and I will be showing off just how gorgeous my 10 year old is!

Blank 13

To be honest, I am terrified. I am constantly carrying the worry that my child is going to die. When he has the aggressive and prolonged seizures like tonight I think “Is this it?”.

I know it isn’t healthy and I know it’s also normal. I have to work hard to remain positive so that I don’t end up an anxious mess. I have to keep my cool so I can remain in control for Sawyer.

Our night was like any other. We got both kids in bed, my husband headed to the gym and I climbed in bed to relax. I played on my phone like any other night for too long and decided I needed to put it down and turn on my monitor.

Typically, when Sawyer is sleeping we don’t hear much other than his ocean sounds on his echo. Tonight when I turned it on I heard snorting. When I looked at the monitor he didn’t look quite right. I rushed into the room to see if he was responsive.

I immediately knew it was a seizure.

I called my husband and told him to come home, called my neighbor to come over and called 911. I administered his rescue meds and waited.

My cool calm and collected neighbor watched for my husband, handed me things as I needed and let all the police, fire and EMTs in the door. She was a Godsend. She helped keep me calm and I quietly took charge of what was necessary. I can’t imagine being totally alone in that situation.

Once they arrived I felt as though I could breathe again. I knew that whatever happened I had professionals around me. Sawyer’s seizures are extremely hard to detect so I had to explain that he was still seizing and these professionals looked to me for guidance.

Each time he has a seizure I look back and think of what I could do differently, and I wish I had administered the second rescue med when the ambulance was on its way. If I had, he may not have needed to be bagged and gone on so much oxygen but who knows.

Each time he has an event like this I relive the days in the NICU where he almost didn’t make it.

The emotions and feelings come rushing back. I often question why he has to go through all he does. Why does he have to have gotten so sick? What did I do to deserve to have a child that I have watched suffer on multiple occasions? It’s hard not to go into my dark hole, but I don’t, because he needs me.

Finally, tonight, I was walking into the gas station to get some popcorn I had promised to bring home from the hospital. I thought to myself: “I look awful. My hair is dirty and my clothes are disheveled. I have bags and dark circles under my eyes.”

People may look and see a disheveled lady and automatically judge (yes, I think my shirt was see through) or they can look deeper with empathy and choose to smile.

We need more empathy in this world. We need more people who instead of judging immediately, choose to understand what it feels like to be that person and respond with kindness. Choose Empathy.


Physiotherapy has been an important part of our lives since Thomas was born nearly 5 years ago.

He has severe dystonic cerebral palsy, so it is essential not just for building new skills but for managing his condition and preventing it delaying further issues that often occur as a result of being severely dystonic and non-mobile.

If you ask around, you’ll soon realise that, much like most healthcare, physio input is very much a post code lottery, and for the most part we felt like we’d won the jackpot!

Thomas was very lucky to be allocated to a passionate and dedicated physiotherapist as soon as he was discharged from NICU and for the most part he has seen her fortnightly during term time ever since.

Last year his named physio unfortunately had a period of long-term sick leave leaving Thomas without regular input for around 6 months before he was allocated a new physio. We quickly noticed a difference in his quality of life, as he began to experience more periods of painful dystonic spasms, and during this period his hips started to migrate more significantly.

As a result, we began to consider private therapy options and on the recommendation of a good friend signed Thomas up for a week of intensive Cuevas Medek Exercise (CME).

It was an amazing experience.

The therapist came from New York and was exceptionally skilled at handling Thomas and pushing him to do things that he’s never done before. For the most part, in typical Thomas fashion, he loved the therapy, laughing through his sessions. By the end of the week we could see a noticeable improvement in his trunk control and enthusiasm to be sitting and standing with support.

We loved it so much that we went for another week a few months later. It was expensive though, and we needed help from our friends, family and local community to raise funds to pay for it. After seeing the improvements though we were determined to access as much as we could.

We signed up for the next session due to take place in May this year and were happy to see the return of his original therapist who after seeing the improvements was quick to recommend a block of weekly therapy to build on the skills he’d learnt.

And then, of course, covid-19.

All therapy ceased, the block in May was cancelled and we bunkered down at home to keep Thomas safe. 6 months later and we are still uncertain when regular therapy will resume.

Travel restrictions, and the awful situation with Covid in America means there are no plans for therapists to travel in the near future and our local physio department have not updated their position on regular face to face sessions since March.

As before, we are seeing the impact on Thomas as he starts to lose skills and experiences more pain. It’s hard to understand the rationale behind the restrictions given that physiotherapy is an essential healthcare service for a childlike Thomas and I wonder whether this is a common experience around the country?

I’d love to hear your experiences!

Screen Time

My 9-year-old daughter is deaf with cochlear implants and mostly blind, non-verbal, and requires close supervision and assistance round the clock.

Middle of March is a LONG time to be out of school, believe me. Any of you with children in the same boat will wholeheartedly agree I am sure.

During Lockdown, Brielle’s class teacher and her 1:1 assistant sent her little videos she could watch on her tablet of her favourite nursery rhymes and songs, and Tac Pac songs with actions. She watched these over and over again! Along with some of her favourite You Tube stations.

Needless to say, her pink iPad has become her (and my) new best friend!

Never before did we rely on it for her entertainment and education so heavily.

My husband even sweetened the whole experience by buying a £30 Bluetooth receiver that jacks directly into her cochlear implant and means she can hear the songs but the rest of us don’t have to be subjected to ‘Hickory Dickory Dock’ over and over again! Genius invention.

Honestly, we wouldn’t have survived Lockdown and summer holidays this year bereft of any camps or usual activities without her trusty iPad.

She can happily watch songs for at least an hour at a time.

Sometimes I feel guilty that she’s been on her iPad too long- but how much really is too much if it’s educational and she is happy and content?

I don’t want her to become a screen zombie or want her iPad all the time, but it really is a great babysitter if I’m completely honest.

I have laundry and preparing food that never stops with six people in the house.

Last night our family treated ourselves to an Indian dinner out (Eat out to Help Out scheme)- sweet deal getting the bill for half price! I gave Brielle her peg feed while we were eating poppadoms and dips, and then she happily sat watching her iPad with Bluetooth receiver while I had my hands and attention free to enjoy the main meal and chat with the rest of the family. It worked amazing. So much less stressful that trying to syringe feed in between mouthfuls of my own dinner!

So, I’m happy enough to use her iPad when it makes sense, in moderation and to reward her too- truth be told she won’t have as much time for it now she’s back in school until 3.30pm!

What I’ve learnt on The Journey

I never wanted to start on this journey. I fought and struggled when I found myself caught in a current taking me somewhere, I did not want to be.

I was terrified for what I would see, experience and feel on the way. I was frightened of being swept under, of drowning and not being able to cope. I leapt ahead – our daughter was 18 months old when she had her first seizure and I was already visualising rapidly changing and scary scenarios in our future.

I’ve got a boat now, a lovely one too. Others are in it (a husband, two daughters and two cats) and many others sail beside us. We’ve been battered by storms that have felt relentless this year but right now (and by that I mean today, I try to avoid thinking much further ahead) the waters are calm, steady. The sun is out and the breeze is cool.

There could be a waterfall around the next corner but this journey has taught me that we have to try to live in the much talked about ‘now’ and draw all the strength we can from it when it’s good.

Paradoxically, my anxiety (like many people, anxiety is something I live with) has been the best it has ever been since starting on this journey. I’ve tried to think about why this may be – I think when calling 999 becomes a standard thing to do, other stuff doesn’t get the importance ranking it used to.

I’ve built up a pretty effective toolkit over the years. Here are a few things I’ve learnt so far:

You are still you

Keeping hold of your sense of self is important. You will frequently be referred to as ‘dad’ / ‘mum’ by people who are not your kids. I find a polite response using your actual name helps, if they don’t get the hint then at least you’ve reminded yourself. If you have a job, don’t give it up because you feel you should.  This was one of my biggest fears when we first had a diagnosis and I’m pleased to say it was just a fear. I still have, and love, my job.

Do your best to be assertive

This does not mean to be aggressive. Professionals want to help. Sometimes they just slip up, make a mistake or forget to include you in things. I attended some brilliant training recently on how to handle meetings with professionals. One of my favourite tips was to ask for an agenda for any meetings that are being called and ask for a list of attendees beforehand. It’s a show of strength from the outset and also helps you prepare. It reminds people that you are a professional too.

Download the mental load

Ah the mental load. The mental load of many people (disproportionately women, in my experience) is heavy. If you bring a disabled child into the equation it can become suffocating. I read a great column by Oliver Burkeman recently where he talked about the power of getting things out of your head and down on paper as a list (or whatever you prefer to use, I have just discovered Trello which I love). I feel lighter when all my ‘to dos’ swirl out of my head and onto a list.

Be open – make it ok to talk about

I appreciate this isn’t easy for everyone. If you are able to be open with others, I find it does mean support can flow in more easily. Often, it’s emotional support (obviously very important) but, if you’re lucky, you may find yourself in receipt of a lasagne on your doorstep.


Ugh, I hate that phrase. Not because there is anything inherently wrong with it but more that it seems to be increasingly used as some kind of generic tick-box advice that’s flung around. For many of us, looking after ourselves isn’t just as simple of doing a bit of yoga. That said, stuff for you really does need to be on your to do list, whatever that looks like.

If I could tell myself something when we started on this journey it is this: You will cope and, despite some difficult times, life will not be less happy. You’ll find joy in places you never knew it existed.

A Snapshot in Time

Social media, photos etc… all we’re seeing is one snapshot into someone’s life.

Filters may have been applied, in the case of children I can almost guarantee that the photo shown is the best out of around 200+ taken in burst mode, and that the beautifully clean room seen on a zoom video call to our friends may actually be the result of some strategic camera (and detritus) placement… I have spent many a frantic moment pre-video calls in lockdown sweeping paperwork/mess/toys/animals out of the camera shot so that my friends and colleague don’t see just what a pigsty my home has become.

The last few weeks can only be described as harrowing as Sam’s body went into overdrive; we still don’t have any answers.

More tests have been ordered, and while we wait our boy struggles with being unable to sleep, gut issues and distressing, aggressive abnormal movements. The impact on all of us has been savage. As a family we have clicked into Survival Mode, J and I now take it in turns to sleep so one of us is with Sam 24/7 to comfort him, ensure his safety and to just be there. The other manages everything else that needs doing.

We’ve been told by well-meaning folks that having a child with Sam’s high level of needs must be like having a newborn again. Believe me, this is nothing like having a newborn. That bit was a walk in the park. And yet, rudely, life as always carries on.

For all that he is going through hell, Sam is still a 9 year old who wants and needs to be entertained. He wants to play, to go places, and see people.

I cannot WAIT for him to get back to school (preferably before a second lockdown/half term please) because I know it will make him so very happy to see his friends – although we’re over half way through September, we still haven’t managed to get him well enough to attend.

His two wonderful teaching assistants have sent him video messages telling him how much they miss him, there aren’t enough words for how excited he was to get those videos!

At one of the hardest times we’ve ever experienced, those little gestures of love gave us all reason to smile.

And Sam does indeed still has his gorgeous cheeky smile; the photo above was taken in the midst of this maelstrom, and shows a happy child laughing as his Daddy tickled him. It may be just one snapshot in time, albeit one I wish desperately could last for longer, but it proves that there is always light even in the darkest of times.

When people ask how we are, how Sam is, most aren’t actually prepared to be told the reality; those who are, well, they’re the ones we keep close and treasure. Ultimately, all that matters is a little boy who has an infectious giggle, a smile that outshines the sun, and who reminds us of what is actually important every single day.