When a Seizure Doesn’t Look like a Seizure

Sam has intractable (drug-resistant) epilepsy. Of all his issues, this is the one I’d most like to take away from him.

Just as we think we’ve got the hang of identifying seizures and triggers, epilepsy changes the rules and suddenly seizures don’t look like seizures anymore.

This week yet another ambulance trip returned my boy to hospital, this time a seizure cluster which had shown no sign of abating at 28 minutes.

For the record, most seizures he has are over in seconds, or a couple of minutes. Tops.

A seizure lasting this long makes us sit up and take note because it’s a forerunner to something else brewing (in this case, a throat and ear infection).

And as we sat next to him in children’s emergency, and he flirted unrepentantly with the nurses, we clocked multiple strange movements… his eyes deviating over to one side hen back again… repeatedly.

Strange, noisy breathing patterns starting together with increased secretions. As a rule, if a movement or action occurs in a repeating pattern over several second/minutes then it’s likely a seizure.

Even the Dr’s often struggle to identify them. Not all seizures are the arms-flailing, not-breathing, convulsive variety.

And I actually find these myriad of smaller seizures more distressing, because I don’t know if a smile is due to seizure activity pulling the muscles.

Or if the happy movements my boy is making are genuine joyful movements or yet another seizure assaulting his brain and body.

It’s exhausting for him, and devastating to have to stand by and watch.

Did you know there are over 40 different types of seizure? I didn’t either, until my boy developed epilepsy.

Seizures have been a massive part of our lives now for almost 7 years and it is the hardest battle we’ve ever faced.

Not every seizure looks like one, so next time you see someone confused, wandering around looking lost or vacant, don’t just assume they’re drunk.

They could be in the middle of a seizure. Be kind, always… you don’t know what someone else is dealing with.

Tube Feeding – One Year On

It made me look back to our decision and the fears that came with it.

It’s been a whole year now since he had his surgery and I cannot believe how life changing it really has been.

I almost look back and wonder what all the fuss what about, but the truth is that everything new can seem so huge and unbearable to process.

The biggest reason for deciding on the gastrostomy was his aspiration that was leading to one too many chest infections and making Zachariah’s life too much of a struggle.

Last winter he experienced around 10 chest infections in such a short period of time, whereas this year, bearing in mind we’re nearly entering December, Zachariah has only had 1 infection and has been keeping incredibly healthy.

It’s just so amazing to see such positive results from something I could never imagine for my son.

The hurt I felt over not being able to feed him has almost disappeared as I see him looking so well nourished and able to enjoy his life more easily.

The fear over how I would actually manage the pump and tubes themselves very quickly vanished as it is so much easier than I ever thought.

In fact I would go so far as to say that it’s easier now as we can set him up on feeds and carry on with activities whilst the milk is nicely pumped straight into his tummy.

We are spending less time struggling with food and more time enjoying the things Zachariah loves.

Now, I’m not trying to sell this to you all, as this is a medical urgency that was presented to us through Zachariah’s struggle with oral food, this is a celebration of Zachariah getting everything he needs safely and less traumatically.

It’s almost an anniversary of safe feeding as I look back at how far we have come from our decision to tube feed.

I’m hoping to put all you at ease, who may be starting those very difficult conversations with your child’s consultant.

If this is you, I’d like to just give you some advice.

– Ensure you write a list of questions for your meeting with the consultant/surgeon. No question is a silly question, so make sure you ask everything that is important to you.

– Take someone with you for support and an extra pair of ears, as if you’re anything like me, you’ll forget half of it.

– Make sure you understand the procedure, (ask for diagrams if necessary), the aftermaths of it and the logistics of it all when you get home. There are some great groups out there that can give you advice and support.

– Be comfortable with your decision and have your child at the centre of it.

Really hope this short blog will help at least one family and give them comfort that tube feeding is not a scary, lonely world, but in fact of world to conquer if your child needs to enter it.

(The picture is of Zachariah having stories read to him in the library whilst enjoying his lunch)

Much love, Rochelle (My Daily Miracle).

Special Needs Parenting: Craving Normality

It really is a gruelling, arduous, heart breaking time.

There is no more helpless feeling than watching you child literally suffering and you being powerless to fix it.

You’re exhausted from worry and lack of sleep, and this impacts your ability to be mum and carer.

Everything that was already a little difficult is now suddenly tenfold.

Basic day to day living goes out of the window – the basic day to day stuff that you already find hard to manage.

Washing accumulates, prescriptions don’t get collected, appointments have to be rearranged (even the ones you’ve waited a long time for!) and so on.

Over a week ago I jinxed it. I said “wow, it’s cold today… feels like chest infection season is here already”.


What was I thinking.

You see, recently I had shingles.

I wouldn’t wish it on my worst enemy.

I had no idea it could be so bad.

For about a week I was one big aching mess, totally debilitating.

Thankfully Amy’s dad was able to be off work to cater to hers and my care needs.

I am so grateful and also fortunate that he could be there. I’m not sure what I otherwise would have done.

Part of him being off work was our feeble attempt at keeping Amy safe from catching chickenpox from me.

However I realised that it was most likely inevitable and also probably not too bad for her to catch it now rather than in the future when it can be more dangerous.

So what I initially assumed was Amy catching a cold actually turned out to be the early symptoms of measles.

Amy having a runny nose and fever usually results in a chest infection and before we knew it she was being blue lighted in an ambulance to the local hospital. After some oxygen, a nebuliser, an inhaler, some antibiotics and painkillers and she was stable. Lethargic, but stable.

The next day we were discharged; after all, she didn’t need an IV and no longer needed oxygen, I could manage her care from home. Or so I thought.

6 hours later my very pale, sorry for herself Amy went to bed.

Shortly after this her dad heard her choke.

He ran into the room to find her struggling once again to breathe. As he flipped her over to pat her back she turned blue and eventually vomited. Vomit still always comes as a surprise after her fundoplication surgery… but I suppose now we can confirm it definitely has come undone! She was sick twice more and we hurried back to the hospital.

It was like de ja vu. Checking obs, nebs, folding out my little camp bed and so on.

I tend to complain daily about being tired but staying over at hospital is a whole new level of tired. The next day I could barely move.

The climate in those wards seems to change drastically overnight.. one minute I’m gasping for air in what seems to be a sauna, roll onto 3am when suddenly the temperature drops and you find yourself scrambling for extra layers. By 7am you can’t believe the layers you have on you and discard them in sweaty disarray, wondering how your hair has tripled in volume over night.

Endless successions of people appear through the door.. checking obs, doing meds, doctors, chewy toast lady (my favourite visitor, I love that weird chewy toast), and then… your friends and family! Its such a relief having close ones around you on those days.

I feel like when you enter the hospital you enter some sort of alternate dimension where time stands still.

For fun you take trips to the water machine, you people watch at every person who walks past your door, or you tidy your very cluttered room. Between this of course is antibiotic poos… oh my.

One night we changed the bedding four times. It’s exhausting. The hospital didn’t have a bed suitable for Amy and we had to tape cot bumpers everywhere and tie sheets around so that she didn’t fall out of bed.

Home away from home is very hard to build when your child has severe athetoid movements. Being in the hospital is an immediate reminder of Amy’s traumatic start in life and quite often I can feel my PTSD symptoms and flashbacks returning.

It’s a shame to have to see the place where it all happened so often.

Eventually we came home and have since had the observation of our wonderful community nursing team. They offer a bit of reassurance that yes her oxygen levels are fine, her breathing isn’t great but they made a plan of 4 hourly inhalers (even through the night!) and are returning again tomorrow to see if we need to go back to hospital.

We haven’t been able to feed Amy for a few days and have kept her off school and respite as her chickenpox are still contagious. I am definitely feeling the strain trying to keep up with the washing (she has given me 5 very dirty outfits today, and bedding!) and everything else that needs doing.

I find myself craving normality.

Even though our normal differs from most other peoples’ normal, I can’t wait for her to smile again, and be able to tolerate her feeds, and to see some colour in her cheeks.

I always feel that she already has so much to contend with that illnesses like colds and chickenpox just shouldn’t be allowed.

We missed a lot of appointments since last week, one of them being seating clinic and the other trialling an eye gaze system. I know that we will still get to do those things but I know we’ll be trying to squash it in amongst the other things that are planned for that week.

It is so easy to get overwhelmed and feel a bit of a snowball effect taking place. I have a stash of voicemails saved ready for when I decide I have the breathing space to return some phone calls i.e. to sleep clinic, OT and so on.

I often watch the other mums and dads… I wonder if they are like us.. open access patients in and out all of the time.

Or are they like some of our friends who are in even more than us. I feel terrible even complaining when I know lots of people who spend weeks if not months in hospital for each admission.

They must be some of the tiredest but most resilient people out there and I have a lot of respect and admiration for them. Then there’s the parents who have maybe never seen a childrens ward before… maybe there child has an illness that will be gone soon but for now needs hospitalisation.

I feel sorry for them too.. this place is so new, and so much is assumed… often it is assumed you know the routine and where things are… it’s so easy to get lost or feel isolated and confused.

All of those machines beeping – what could they be. I’m no longer like that, I’m accustomed to the many beeps and what they mean.. I am no stranger to the mute button and the hassle of sats probes.

Hopefully soon Amy will be on the mend and we can return to our normal. I wish you all all of the normality in the world, especially during this cold season!

Special Needs Parenting: Avoiding Holiday Stress

Shopping, wrapping presents, writing and sending cards. All these on top of the usual hectic and often stressful lives we lead. In addition to this is the emotional pressure of pleasing everyone.

Something many of us are familiar with but is often an impossible task.

Visiting relatives or having them visit you can heap on pressure and your stressometer can be ready to explode.

All this and all you are trying to do is keep everyone happy.

The presents and shopping, are often the least stressful part as this part can be managed over a period of weeks (thank goodness for the internet).

What I hear the most is the most challenging is managing trips to or visits from relatives that you often only see a handful of times a year. This can be especially stressful if you have a child with special needs or a disability.

So how can you manage the situation so that the whole family can enjoy the festive break?

  1. Stop trying too hard – Everyone’s happiness is not your responsibility – focus on the most important people and no more.
  2. Only do what you know you can manage and stick to your plan – If you know your child will only manage a couple of hours at a relative’s house then explain this in advance to your host – If they are worth it they will understand, if they are sniffy and judgemental then ask yourself why you are visiting in the first place!
  3. Just because they are family doesn’t mean you have to see them – There is little place in the world for oughts, shoulds and cant’s. Live life by your rules not ones that have been projected on to you by others!
  4. If you decide to have people visit you then plan it around you and your family’s needs – Don’t be afraid to tell people you need them to leave by a certain time if you have children that wake through the night or that find visitors hard to cope with – There’s even specially printed bunting available now asking people to leave by 9pm!
  5. Make sure you ASK FOR HELP from others – people aren’t mind readers and won’t necessarily know that you are struggling.

  6. Try not to be sarcastic if you are being left to do everything – see the previous point about others not being mind readers! If you assume then it builds resentment in yourself which has the potential to impact on everyone!
  7. Plan opportunities to have a break – whether that be a walk around the block, a nap, a relaxing or where possible a night out with friends – do it, don’t just talk about it!
  8. If you find yourself questioning this – ask yourself why – what are your barriers to implementing your own boundaries?

Try and follow these and the Christmas period has the potential to be far merrier for everyone.

Have a great festive period everyone and here’s to 2018!

Special Needs Families: When Your Birthday Rolls Around

Yet it seems like the days have passed in the blink of an eye.

This time of year always takes me back to your beginning; to our journey’s beginning.

As a frightened, yet excited mother-to-be, I had waited years for you, little girl.

You were the anxiously awaited baby sister to complete our family.

You were the daughter we had wished for, and in the final weeks before your arrival, you were the daughter we had desperately prayed for.

Thinking back on your first precious cry; a sound that brought great relief and lifted an enormous weight from my chest, I knew that everything about you was amazing.

You fought just to be here, and that fighting spirit has grown stronger in you over the years.

Reminiscing on our first few years together, every birthday has been a joyous celebration of your life, and I continue to grow more grateful for you as the years come and go.

Family is always with us to celebrate your special day, and your teachers have even come to your birthday parties! You are deeply loved by everyone that knows you.

As wonderful and happy as those birthday moments have been, in the early years, birthdays also brought with them a twinge of sadness.

When you were three years old, you were given puzzles and push-along toys.

We watched you play with your trusty little piano (most favorite toy for six years running now!), not giving a second glance to the others.

At five years old, you still preferred infant toys; ones that crinkle and that are great for chewing.

You weren’t admiring a new baby doll, or riding a new bicycle.

There was a harsh sting of reality that accompanied those birthday gifts, and a bit of guilt in wishing you could run and play with the other children your age.

Seeing your sweet face light up with the treat of crumpling tissue paper from your gifts melted away my sadness.

In awe, I have watched you happily experience the little things in life that are so often taken for granted.

You savor life and delight in simple joys in ways that most people can’t comprehend.

There is great beauty and wonder in that.

Reflecting on the days since your last birthday, there is no sadness.  Over time, those little pangs of grief have been replaced by tremendous pride.

My heart leaps at all the obstacles you’ve overcome and all the new skills you’ve gained.

You’ve learned to walk independently in a gait trainer, bring a spoon to your mouth, sign for, “please” ,and so much more.

You no longer eat only the icing on your cake, but you eat the CAKE!

That is a huge milestone all in itself.

You achieve so much, despite the hurdles in your way.

You have a tenacity and a spark about you and it has been a breathtaking adventure watching you soar.

On this day, your seventh birthday, I celebrate the beautiful, bright, spunky and joyful light that you are.

You are truly a gift from above.

To quote the words of a classic song, “How wonderful life is while you’re in the world.”

I am thankful every moment for you.


I Don’t Want to be a Carer, I want to be a Mum

I want to nag you to find your school tie and put your shoes on.

I don’t want to connect your little tummy to a feeding tube for your breakfast and a cocktail of medicines before 8 o’clock.  I want to heat up a bowl of porridge and sit with you while you eat it, talking about the day ahead.

I don’t want to wash your face and brush your teeth, carefully wiping the foam away, lest you choke.  I want to peer over my glasses at you sternly with a look that says; “two minutes? There’s no way you’ve brushed your teeth for two minutes!”

I don’t want to wave you goodbye as you sit on a bus each morning with adults and children I barely know.  I want to hold your hand as we walk to school, I want to kiss you goodbye on the playground.

I don’t want to spend the time while you’re at school filling in forms for things you need, chasing appointments with consultants and picking up medication.  I want to be buying you the latest computer game or cleaning mud off your football boots.

I don’t want to panic each time the phone rings, worrying that it’s the school to tell me they’ve had to call an ambulance for you.  I want to worry about nothing more than bumped head letters and cut knees.

I don’t want to spend endless hours doing physio with you each evening, trying to force your floppy limbs to do things they really don’t want to do.  I want to listen to you read and practise your times tables and test you on your spellings.

I don’t want to put dinner into a food processor and blend it until it’s smooth enough for you to taste; three teaspoonfuls carefully spooned into your mouth, slowly, slowly, slowly.  I want to dish up a hot home-cooked meal and nag you to use your knife and fork properly and finish your vegetables.

I don’t want to wedge you into a sleep system each night and attach a probe to your toe. I want to tuck you in and cuddle you and wish you goodnight.

I want to put you to bed without checking your heart rate and oxygen levels.

I want to kiss your forehead without wondering about your temperature.

I want to watch you sleep without worrying about seizures.

I want to wish you goodnight and hear you reply.

Some days I don’t want to be your carer, I just want to be your mum.

Epilepsy is Relentless

My view was that it was related to fits and there was medication to control it, I couldn’t have been more wrong as it is a much bigger picture than this, and everyone’s epilepsy is different.

Zachariah was just a few days old when he started with jerky movements and from then it took over a year to get a diagnosis and the correct medication.

It’s a blur to be honest as his seizures weren’t too aggressive it wasn’t the main worry at the time.

The meds seemed to be working and keeping the seizures under control, so I had this idea that as long as we kept up with his meds he would be seizure free.

Whenever we saw him progressing seizures we knew it was time to up the dose and we seemed to be winning.

For many this may be their story, however this was a false representation of Zachariah’s epilepsy as we later found out, the hard way I may add, that he had a type of epilepsy that cannot be controlled completely, which may be a familiar story to many of you too.

Zachariah has type 2 Lissencephaly (smooth brain) which means that his brain hasn’t fully developed, resulting in many disturbances, one being epilepsy.

The type of epilepsy that comes alongside lissencephaly is one that cannot be treated fully by meds and is relentless, resulting in many children losing their lives to it. Knowing this absolutely terrifies me.

With every seizure comes a new numb feeling of grief that it could be the one that takes his life. His consultant discussed with me the fact that we need to find a comfortable amount of seizures as they are never going to go away.

You can imagine how shocking this conversation was, how can I ever be comfortable with any seizure, let alone trying finding an amount I’m OK to watch him suffer through daily.

I decided that I would like to pursue more meds in the hope of battling less a day than he is currently experiencing.

The issue with this is, the more meds he takes, the more risks there are in other health areas, such as his liver. And the risk of his body getting too used to the meds.

It’s such a cruel bubble to live in, and extremely difficult to find a balance, as I never wanted to be the Mum who just pumped drug after drug into her son.

But I also cannot stand by and do nothing as my son helplessly loses his battle against epilepsy.

Epilepsy is a humongous pain in the backside, comes with a ridiculous amount of worry and fear and is something we could live without.

It is detrimental to my son’s development and takes away the smile from his face. As a mummy, watching his eyes weep, his face turn and his skin colour change, as he fits is the most heart-breaking thing I’ve ever had to do.

It pains me to see my boyo look so helpless as the seizure takes control over his body. I have become the mum who overthinks every activity as the fear of the next seizure takes a hold of me.

But I try daily to rebel against this fear and enjoy the precious moments. Zachariah is a real superhero who keeps on living a happy life, it’s so important to follow his lead and focus on the good times.

Research is so important into tackling this evil disease, so awareness is key.

Please share this blog with your friends and show that epilepsy is still, very much a huge battle that needs to be won.

Lots of love, Rochelle. (My Daily Miracle)

Sibling Love

I’ve written many posts on sisterly love and care, but I just can’t seem to write enough, my heart is often bursting with thankfulness and joy at the love my girls have for each other, and especially for their youngest sister, Brielle.

You see, Brielle had a really rough start in life.

In her first six months in intensive care, we thought, on many occasions, we’d have to say goodbye.

Brielle was not one of the ‘lucky’ preemies who grew and developed into a healthy baby without long term health consequences of her prematurity…

Quite the opposite, she developed many long term health issues and disabilities as a result of being born fifteen weeks early.

But thank God, she is still a very happy, loved and loving little girl of six now! To see her emotions develop and her attachment to each one of us grow, is absolutely amazing.

The fact that she can cry now, or get upset and express needs and desires is a huge thing. It was so hard when she was much younger, she was completely silent, never cried or hardly moved at all.

Life would be much harder if I didn’t have all my great girls to help with and dote on their little sister.

She knows each one of them, their ways and quirks, and gets so much joy playing with them- let’s face it- it’s different playing with a child (small person) than a grown-up!

They love to dance to music in the living room, build block towers together, do the light box, and swing together at the playground and many other activities!

Brielle also loves a good snuggle, she’s so cuddly the eldest sister calls her ‘my koala bear’.

There’s really nothing the girls wouldn’t do for their little sis.

Due to her disabilities, sometimes they have to be her voice, her eyes and ears, and support her as she walks or lift her up.

I’ve been so blessed as a mum over the years, as I see the love and devotion develop in them, their love given so freely and complete acceptance of Brielle for who she is.

They don’t focus on what she can’t do, but rather on what she can do, and are eternally optimistic and positive.

Sibling love is like nothing else!

5 Great Survival Thanksgiving Tips for Families with Special Needs Children

Here are a few tips with assisting surviving Thanksgiving with a child who has special needs.

1)  Stand Your Ground

One of the single most stressful aspects of Thanksgiving is the pressures and demands extended family can place upon the holiday.

Your mother wants you to do Thanksgiving at her house, where your child’s sensory challenges are exemplified.

Your twin sister wants you to host Thanksgiving at your house so she can bring all six of her children, husband and his parents over to avoid cooking – even though she offered to bring a pumpkin pie as a consolation prize.

Your husband’s parents lay the biggest guilt trip on earth that they haven’t seen you for Thanksgiving for the last three years even though it would require you flying out of State incurring financial debt for traveling and put your medically fragile child at risk for a host of germs.

The biggest and best advice is stand your ground and exercise the word “no.”  In fact, start practicing that simple phrase right now.  The word, “no.”  It’s so powerful.

It’s life changing and will bring you so much internal peace. I know what you’re thinking. If I say the word no, to any of it, the world is going to view you as a bad person.

Your mother might stop talking to you.  Your husband’s parents may permanently disown you – your sister may quit calling…. but rest assured if any of your family members are worth their weight in gold they absolutely will understand that you have to set some boundaries for your sanity and for the best interests of your child with special needs.

2)  Be Selective

Maybe your child with special needs can’t handle your huge family gathering of twenty plus people.  Maybe you need to consider downsizing to just immediate family or grandparents.

Perhaps your husband’s idea of putting up the Christmas Tree on Thanksgiving day is blowing your mind because you just can’t handle multi-tasking so much in one day.

Be selective on how you need your Thanksgiving to look.  It is going to look a little different for all families with special needs.

Select your priorities and make them easy ones.  If all you can handle is getting a turkey on the table then that’s all you need to focus on.

And make sure you remember to surround yourselves who are going to give you the space to be selective on how Thanksgiving is going to go.

It may even be paper plates and disposable silverware over the yearly fine china that takes hours to wash by hand.

It doesn’t have to be fancy, the day only needs to be filled with peace, contentment, tenderness and love.

3)  Know Your Battles

If you have a child that is only going to eat the center out of the pumpkin pie and won’t even touch the crust, don’t stress.   Let the pie look like a monster ate it in the night.

If your child hates turkey and will only eat a cheeseburger from Wendy’s, that’s okay go fetch Wendy’s and serve the rest of the family turkey.

Don’t force something that is going to cause unnecessary stress.  Perhaps turkey isn’t even going to be on the menu, maybe your child demands ham.  That’s okay too.

Nothing about our lives are traditional and neither are our holidays.  Know where your real battles are.

Remember the battle is never what is on the menu.  It’s making sure that our child with special needs is comfortable and well adjusted to the extra chaos that can come along with the holiday season.

Picking and choosing our battle is essential for maintaining the entire family’s sanity.

4)  Releasing Guilt

Do not feel guilty for standing your ground and telling everyone how you need Thanksgiving to be.   Don’t feel like you have let others dictate how your holiday should look or go.

Don’t let your mother make you feel bad because she thinks you should be hosting Thanksgiving for the entire family.  Don’t let your husband’s parents scare you into a long and unnecessary road trip.

Don’t let your friends and family make you feel guilty that their Thanksgiving is easier than yours or that somehow they are better than you because they can put on a Thanksgiving dinner that looks like it came out of a Martha Stewart magazine.

Thanksgiving must be a guilt-free holiday.  It’s even a hall-pass to not to feel an ounce of guilt about all the calories that you’ll be consuming.

5)  Minimal Planning

The most simplistic plans and ones that require minimal effort are going to offer you the biggest peace of mind and deliver the biggest reward.  Don’t stress if you forgot the dinner rolls.

Don’t make a list of all the things you think you should accomplish in a day.  Don’t fret about packing a suitcase and remembering all of your child’s medically necessary needs for just one day of a turkey dinner.

Go with the flow.  One of the most important things you can do is not overly plan.  Go with the flow.  If something isn’t how you wished it to be, that’s okay.

Don’t plan on having dinner on the table by a certain hour.  Perhaps it’s going to take longer for you to peel potatoes and mash them because you had to cradle your child through a two-hour meltdown.

That is okay.  Don’t place unnecessary burdens and expectations upon yourself and surround yourself with guests who completely understand the unpredictability of every single day – even on Thanksgiving.

Most importantly – do Thanksgiving your way.  It really doesn’t matter what that looks like, if it resembles something traditional or something completely what others might consider crazy.

It’s just a day – and you’re going to get through it – your way.

Your own unique and wonderful way – just like your life always is parenting a child with special needs.