Siblings and Sacrifices

Siblings of children with complex medical needs and disabilities are an incredible kind.

They are resilient.

They love unconditionally.

They protect.

They educate.

They encourage.

As I’ve witnessed over the years in my own home, they often make many sacrifices too. They have a graceful way of making them effortlessly and without resentment.

My son is 19 years old and for many reasons, wise beyond his years. He has watched scary, life-threatening medical emergencies unfold before him. He has been trained to respond and he has learned to do so with a steadfast calmness. He has been forced to grow up rather quickly over the past 12 years. He’s seen up-close how very unfair life can be.

Through all of this, he is the most empathetic and caring big brother that his little sister could ever ask for.

Life teaches us lessons in harsh ways sometimes.

It can break a mother’s heart, while making it burst with pride at the very same time.

When he was younger, my son was dragged along to endless medical appointments and therapy sessions. There was never a complaint. There was rarely a question. It was always an adventure for him; he’d charm the therapists and be happily contented with chicken nuggets and ice cream afterwards. Countless hours spent sitting quietly and playing video games in waiting rooms were the norm for him. He didn’t know any other way.

Family vacations have been cut short. Beach trips and ventures that were meant to include our family of four have often morphed into divide-and-conquer missions; teams of two.

We’ve had to postpone or cancel plans and change directions at the very last minute. Time and time again. I can’t recall a time when he met any of those situations with bitterness or animosity. Even when feeling justifiably disappointed, he’s shown an innate ability to rise to the occasion with compassion and understanding.

I often hear: “I’m fine, feed her first, Mom.” “It’s okay, we can go another time, Mom.”  “Don’t worry about me, Mom.” “Call me when the doctor comes in and reads the tests, Mom.”

Life can feel like a balancing act at times.

Especially when he was younger, the guilt of letting down my first born often felt crushing to me. It always left me feeling torn, and as if I had failed. I have always tried my best to make sure that he knows how deeply loved and treasured he is. That he is genuinely seen and heard. He’s all grown up now. I often find myself standing in awe of the altruistic, unwavering selflessness he shows in many aspects of his life.

I can’t take any of the credit for it.

It’s his own nature and the way real world experiences have shaped him. It hasn’t always been easy for him, but he has beautifully embraced this life and he makes me so very proud. He’s made many sacrifices along the way. Although he doesn’t even realize it, he’s so much more than a brother. To the little girl who lights up when he walks into the room, he is the BEST big brother. In her eyes, he hung the moon.

Work Life Balance

Raising a medically complex child is an extraordinary challenge for anyone. Finding balance between caregiving working alongside your personal and working life can often seem like a changing enigma.

However, the last four years I have tried to get my own balance right caring for my own two complex girls Sienna and Scarlett. Sometimes the balance tips in the wrong direction. I am learning this can’t always be avoided, life can throw us curve balls. 

In this blog post, here are five effective ways I have used to restore some balance and order.

Work arrangements

I have stepped back from my customer facing job role to work more flexibly from home or sometimes alongside a hospital bed. Reducing my hours makes it easier to accommodate medical appointments and care needs.

Most bosses have empathy towards family health situations and being honest and asking for adjustments that enable you to still work in some way is often better than parting ways permanently. Covid taught us many roles can be done from home and in flexible arrangements.

Find your tribe.

Remember, asking for help is a sign of strength, not weakness. As soon as I stopped proclaiming I was fine and started asking friends and family for a little support, help came pouring in (not necessarily in hours of childcare on the ground).

I have got a handful of friends over the last few years that are able to hear out any situation and offer useful practical tips. Equally I am happy to give back to them my own knowledge on a matter. Family even offering to grab the odd prescriptions can make a huge difference in a tight schedule someday!

Managing the medical appointments

Mastering time management is crucial when juggling work and caregiving. Ask if the outpatient appointment can be moved to a day you didn’t have plans on? Ask if this can be a telephone appointment? Nothing to say and a routine appointment, can it be postponed for 6 weeks?

We make some protected time in the calendar that only urgent or emergency appointments can take place; Summer holidays, birthdays and Christmas events are areas I try to avoid after spending the girls’ 2nd birthday at a 2-hour physio appointment highlighting all the things they couldn’t do. They are only kids once.

Accept Respite

Many communities offer some form of respite care relevant to the child’s age and needs, some in the day or even overnight to give carers a break. TAKE THE BREAK, GET THE SLEEP! For us in our area this looks like hospice respite stays a couple times a year.

We also have some support in the home and in community for days out. Since having a couple nights sleep a week it’s enabled me to face the week ahead and see some light in the cracks. Again, it’s not weakness taking the help, we can’t as carers pour from an empty cup.

Self-Care Matters

Perhaps the most critical aspect of maintaining a healthy work-life balance is prioritizing self-care. Often tricky to plan in regularly or particularly if a child’s health status isn’t as stable, it may have to go bottom of the priority list for a minute.

As soon as life allows again planning in the odd date night, going for a walk, or doing a hobby you enjoy can really help. When life doesn’t allow quite as much time to go out and physically take time away from your caring role, meditating, journaling and practising gratitude may help. It could be as simple as reading a prompt sheet and thinking back to your day and every tiny thing you have accomplished.

This can massively help with creating a positive mind set. Tiny habits add up consistently to some significant changes. Looking after yourself not only improves your mindset, but it also often improves your wider attitudes towards work and how you view your role as a parent carer.

I wish I could practise what I preach, sometimes the balance is all out. I can work and barely find time for myself, or the girls get unwell and I miss a school event that I desperately wanted to go watch but know my caring role takes precedence. When the dust settles remembering I count too, as does all our family and working ultimately helps pay for our daily life can sometimes put my caring role back into perspective.

When is a Car Not a Car?

I would imagine that most people would say that their car or other vehicle plays a pretty important role in their daily lives. For my family, having access to our own vehicle is a lifeline.

As the Dude uses his wheelchair fulltime and is unable to self-transfer we chug around in a bright red, adapted Ford Tourneo. Provided through the Motability scheme, our big, glorious van allows him to travel in his wheelchair in comfort, safety and is an essential piece of mobility equipment.

We have recently had two very different experiences involving our beloved van.

The first was on the motorway, as we headed off on our holidays. Anyone who has ever travelled with SN children will attest that this is akin to planning a military campaign so we were less than thrilled to develop a flat tyre. Being unable to feed your child or attend to any person care needed is always less than ideal, especially when you consider that his seizures are frequent, can be life-threatening and any type of discomfort can trigger them.

We were saved from holiday catastrophe by the RAC man and the lovely staff at a well-known national tyre retailer. All of whom were amazing, made my boy feel like royalty, and ensured we were back on our travels quickly. The kindness and consideration shown by everyone from the first phone call to get help to the last wave as we drove off again made the whole event far less stressful. For us anyway, the Dude found the whole business very exciting.

And then there’s the other side to humanity.

As I mentioned before, our van has a ramp. A LONG ramp. It’s pretty obvious when its down, and yet recently another driver still managed to drive straight over it. They actually stopped, checked we hadn’t seen them, then drove off. We know this because the car behind them gave us their number plate. Sigh.

So currently, we are van-less.

While we wait for a courtesy vehicle to be sourced that is wheelchair-adapted (about as rare as hen’s teeth), we are effectively house-bound. We can’t take our boy anywhere; it makes you realise just how vital this vehicle really is to our lives. Accidents happen, however the selfishness of the other driver in just driving off still makes my blood boil.

Fortunately, school restarts next week so at least our boy will be able to attend thanks to his school taxi. I however will be spending hours on the phone as the traditional slew of appointments has just landed on the door mat. Because as any SN parent knows, the start of school term will always herald a multitude of appointments. Hopefully we’ll have our lovely van returned to us quickly, in the meantime working from home is once again the order of the day.

Seizures and Setbacks

No matter how many times I witness a seizure, I am traumatized and terrified. EVERY SINGLE TIME. When someone you love lives with this disorder, there is an ever-present heaviness.

And it’s so much more than just the actual seizures.

Parenting a child with complex special needs and an Epilepsy diagnosis means a heart filled with unrelenting worry.

It means the presence of a constant, nagging fear…knowing that seizures, even when hidden away for a long stretch of time, still lurk quietly in the shadows.

It’s learning to live in a state of chronic, traumatic stress.

It’s managing to keep every aspect of life as meticulously regimented and routine as possible.

It means tapping into a strength for your child that you never thought you’d possess. It’s never giving up and never backing down.

It’s being afraid to drive away from my daughter’s school, with a paralyzing anxiety of being out of her reach.

It’s feeling my heart drop into my stomach when her school calls in the middle of the day. Then, it’s driving at ridiculous speeds to get to her side, and the need to comfort her. The powerful, unstoppable need to hold her and tell her she’s going to be ok.

It’s not knowing when a perfectly normal day will turn into an ambulance ride to the ER. Not knowing when her happiness will be unexpectedly thwarted, in an instant.

It’s the heartbreak of watching seizure freedom being snatched away from her, as she again suffers the aftermath that the frightening event leaves in its wake.

It’s the recovery period that keeps her heartrate high and her breathing shallow.

It’s the medication increases that bring agitation and days of recovery from drowsiness.

After the dust settles and normalcy has finally been restored…it’s the setbacks.

My daughter has regressed in areas and lost valuable skills after having seizures. Each time, I feel defeated and heartbroken; grieving the abilities that disappear before my eyes. Skills that she worked so hard to attain seem to vanish, bringing us back to square one.

I’ve watched chewing fade away. I’ve witnessed severe anxiety return in social situations and when outdoors. Months and months of OT aimed at promoting self-calming skills have been washed away in minutes. Weeks of potty training and its long-awaited success have come to an immediate, crashing halt.

It’s easy to give into the heartache and frustration these setbacks bring. It’s easy to be sad and to get bogged down in things that are taken away. When this happens, I remind myself who my daughter is and all that she is capable of.

She is courageous in every facet of her life. She consistently pushes through. She overcomes. She gives me the determination to try again. Her tenacity reminds me that she has mastered impossible feats before.

With love and lots of time, she can master them again.

Our most recent setback was with potty training. That familiar fear crept in as all progress seemed lost. Had the skillset and understanding that she worked so hard to attain been erased? Potty training has been a monumental win for her and a life-changer for her health. It once seemed an impossible feat; it had finally become a reality. Thankfully, and to my great surprise, this newfound life skill and ability shortly returned.

Seizures did not win. Setbacks did not win.

We can never let them win.

We’ll fight back against them, time and again. We’ll keep a watchful eye out for their unwelcome return and try with all our might to keep them at bay. We’ll do everything in our power to always rise above the seizures and setbacks.


Becoming a parent to a disabled child can sometimes mean the future we envisaged looks different. Things may look physically different if our children need special equipment. For us this was a gradual process and one which took some adjusting to.

Our little girl has severe epilepsy and a severe learning disability. On the face of it you may wonder what equipment she needs. Despite not needing as much equipment as many other families, we do have more than I could have imagined.

Here’s what we currently have; two special needs buggies, a helmet which she wears all of the time, a special feeding chair so her head is less likely to fling back during a seizure, a special bed that she can be zipped in to so she does not get out and have a seizure in the night, a drop harness for when her seizures are so frequent she needs to be held up, a heart rate monitor for focal seizures, a bed monitor for tonic clonics (her main type) and a Vagus Nerve Stimulator magnet.

It’s quite a list, especially when all of it (apart from the buggy) is for epilepsy.

Equipment suddenly invading your personal living space is difficult. For us it felt frightening, alien and most of all, I felt sad that we needed it. Without doubt the helmet was the hardest thing to adjust to.

It suddenly and clearly marked my daughter out as being ‘disabled’. It brings with it stares, questions and sometimes looks of confusion from others.

We started off having to use a bike helmet as she was suffering hundreds of drop seizures a day during Covid and the services simply switched off.

She now has a ‘proper’ helmet that she wears all the time.

At first my heart hurt every time I glanced at her wearing it. Now it feels part of her, and something that is there to help and to protect her. A friendly adaptation. We were brutally reminded of this last week when we, due to complacency, went to the supermarket without it (we’d had an unprecedented run of a few weeks without a daytime seizure). She refused to sit in the Firefly trolley and then had a big tonic clonic, hitting her head on the stone floor.  

We have always been adamant that we want the ‘best looking’ equipment possible. It is about dignity and having a right to express some style and personality where possible. It matters to me that my daughter’s helmet is colour we like and does not look grubby.

One brand of helmets simply make theirs in bright red and royal blue (both colours on one helmet). This makes me cross as I cannot imagine that many kids, or adults for that matter would choose this colour combination in clothing. It suggests the design is going for practicality and ‘bit of colour’ and that the makers have not consulted with people who need to use it.

It’s a good helmet in a soft fabric, but It feels like very little thought has been given to the fact that a child will need to wear the helmet day in day out.

Some children may love it or not care, others may be less keen.

The helmet my daughter has comes in three basic colours including black, so you can at least have an option. It’s still a very basic nod to style though. We have some cat motifs to sew on to her new one (which we have been waiting almost a year for) to customise it.

Professionals and designers must recognise the emotional impact that equipment can have on a child and family. I realise budgets play a part, but consultation with families and small colour adaptations for example, should not cost a great deal more.

It’s heartening to see the Firefly equipment in on-trend colours with clear thought having gone into the design (just look at the Upsee; I’d be going for the denim / rainbow combo). The difference this thought makes is far from just cosmetic, it has the power to shift emotions and ultimately make for a more contented family.

PS. Fancy designing an epilepsy helmet, Firefly?!      

A Trip to the Beach

We’ve recently returned from a family holiday. It felt so special that it was just us, no carers or enablers, just us, with grandma along for extra fun and another pair of hands. The trouble is, the very thing that makes it feel so precious (no one but family) can make it exhausting as well; no respite or night care for seven whole days and nights.    

We stayed in the UK as we are too scared to travel abroad due to seizures and unpredictable behaviour (one day we would love to). We were near beautiful beaches and had a week of almost wall to wall sunshine. What a treat. 

We went to the beach every day, but not for long each time. It’s hard to explain how challenging it is for us to go to a beach. It should be so simple, you turn up, lay out a ‘camp’, adults sit, watch the kids, kids dig and then you all paddle / swim.

By the end of the week we’d managed to get our beach routine and technique perfected.

Our little girl, Taz (not her real name) who is nine and almost as fast as a whippet, requires athletic supervision on the beach. By this I mean running. There was a team of four of us looking after her; me, my husband, my mum and our older daughter. The typical routine, which lasted about an hour to two hours maximum each day, went something like this:

1. Arrive at beac

2. Remove Taz from her buggy

3. Fastest runner (husband) chases after Taz who has immediately bolted across the beach at high speed. A key part of this role involves apologising to the families whose sand sculptures she has blasted through and whose ‘camps’ she has destroyed. Responses vary.

4. Remaining three in the party hoick the beach tent, buggy, buckets spades etc. about 20 metres on to the beach (no more as getting off the beach is a challenge).

5. Work begins to catch Taz and change her into beach wear (normally including a wetsuit as she likes to swim in the sea but hates the cold). Compliance varies depending on mood.

6. We all quickly change while one person continues running after Taz who has resumed her sprinting.

7. Catch up with and fit a life jacket type thing to Taz.

8. Head into sea – team Taz all plunge into the cold water super-fast so we are ready to receive her as we bring her in. She enters water and clings on to chosen adult, climbing up them and digging nails (that are overdue a trim) into their neck while she acclimatises.

9. Taz acclimatises. Is delighted.

10. Team Taz are cold, need to exit water. A wetsuit clad Taz is less keen and wants to keep ‘swiminin’.

11. Cold, salty rigamarole trying to encourage exit to beach.

12. Taz exits sea. Runs.

13. Few more laps of the beach. More sandcastles narrowly avoided.

14. Taz sits and digs for 6 minutes (we grab a quick photo). Taz runs again.  

15. Time to go. Taz runs.

16. Team Taz drag all the stuff off beach while designated chaser attempts to kettle Taz in the right direction by sideways dancing around her with arms spread reminiscent of herding sheep.

17. Taz allows herself to be lifted into her buggy.

18. We ascend extreme hill.

19. Repeat x 7 days.

Beach trips are extremely hard for us but the look on Taz’s face as she tears freely around the sand, and the joy on both girls faces as they swim in the sea together makes the extra exertion worth it.

This time last year Taz was going through an awful time with her epilepsy which saw her hospitalised six times with seizures. Just one moment of recognising how well she is doing right now is enough to keep me running.  

I need a spa break now though.