Halloween has been quite the topic this year! Not only has it been the topic for discussion in most households due to COVID-19, but it has also been in the news for Target’s new adaptive costumes.

With options ranging from a vibrant dragon to a plush unicorn, you can either find costumes thoughtfully designed for those with sensory needs or inclusively designed for wheelchair users.

Of course, as my son Oliver could very well demonstrate, you do not need an adaptive costume to have fun! With little tweaks here and there, any costume could be an option for your kiddo or kiddos.

Although you won’t find it in Target’s adaptive costume section, Oliver wants to be Marshmello (the DJ) this year. I am not the handy momma as some of you might be, but we had our first trial run of what we envision the costume to look like. (See photo for the cuteness overload!) Because we chose to make the costume somewhat, modifying it was not hard. We started with the unmistakable mask that Marshmello is known for.

On Amazon I found a mask that goes on and comes off with ease and even lights up in different colors with the use of a remote. Digging from his mounds of clothes, I was able to find a simple white t-shirt and white pants to make the outfit. Per Oliver’s request, we completed the look with all red shoes.

Now the fun part could begin; designing a portable DJ booth for his wheelchair. Using a simple cardboard box we got from a previous package, we spray painted that black and added some print out decals to make buttons and speakers.

For the records, this was executed with a trip to an antique shop in which I scored a deal for two vinyl records for five dollars! Reserving a spot in the box for my phone to play music while out, his stage was now set. Now we have to just patiently wait for Halloween before he can debut his look; but until then we will just have to figure out exactly what our plans will be given the current world crisis.

Whereas Target has done amazing things for our community by including an adaptive costume line, there are always ways you can tweak other costumes on the market or even make your own. It is such a fun time to get creative and have fun.  I would love to hear what you may have planned for your family and kiddos this year on Halloween day and what they will be dressing up as!

We were at our 20-week anomaly scan during my pregnancy with our triplets. The technician took longer on one of the baby’s backs, but I wasn’t hugely worried since we’d been told at an earlier scan with our fetal medicine consultant (since I had 3 little people on board!) that all was ok.

Since the consultant wasn’t available, they sent the scans to her urgently and I was told to wait on a phone call. I was working a shift as a senior nurse in a home for people with neurological disabilities when the call came. I’ll never forget hearing the words “I’m sorry, but your baby has spina bifida”.

I honestly don’t even remember what happened next, it’s a blur.

For anyone who doesn’t know, spina bifida literally means “split spine”. It’s a neural tube defect that occurs in the first few weeks of pregnancy. Folic acid reduces the chances of spina bifida by around 70%. We were in the 30% who were taking folic acid (religiously) but our baby had it. As your spinal cord contains the nerves to the rest of your body, there are a multitude of complications that can occur with spina bifida.

Our son has myelomeningocele which is the most severe form. His spinal canal was open from roughly L4 (the fourth lumbar vertebrae) to S3 (the third sacral vertebrae). Imagine someone undoing a zip, that’s how I always think of it. Pretty doom and gloom right?

So what’s happened since?

Joy.

Our triplets were born at 32+4 via emergency section. Ben was the first out, he is our “healthy” boy. Chloe was born a minute later (weighing exactly the same as Ben at 4lbs 4ozs) then Jacob a minute after that! He was little, weighing just 2lbs 10ozs, but none of them needed ventilators and were classed as “feeders and growers”. Jacob’s neurosurgeon said he needed to be up to 5lbs before they could operate to close the split in his back. He had his surgery at six weeks old and then had a shunt fitted for hydrocephalus (a closely related condition, I’ve a blog on this too) a few days later. We then welcomed him home!

Pride.

Jacob has fought from day one. His determination is remarkable and watching him fight each battle has been agonising but my goodness…how my heart bursts with pride knowing he is our son. I’ve also taken such pride in how our friends and family have learnt all about spina bifida and how to best support Jacob.

Love.

Spina bifida wasn’t part of our “plan”, and I highly doubt its part of anyone’s. Of course, there are challenges, but I cannot find the right words to describe the love I feel for Jacob. Seeing my husband, Ryan, with him has also been incredible. I couldn’t have picked a better husband or Daddy for my children; he is phenomenal. Ben and Chloe are the BEST siblings Jacob could ever wish for, they love him for exactly who he is and accept every little part of him. It’s beautiful to see the bond they share.

Defiance.

We were told Jacob would never be able to stand, walk or transfer. We looked into different ways to get him up on his feet, and although the standing frames provided were brilliant, we wanted something a little less cumbersome. We found the right thing for us, and Jacob WALKED!!! My goodness…how my heart exploded with pride watching him take independent steps. He’s proved them all wrong and taken huge delight in doing so! Sometimes being told you can’t do something is all the motivation you need to get the job done.

Gratitude.

People (myself included!) complain about the National Health Service (NHS). It isn’t perfect, but if we didn’t have it we would have to factor cost into the already massive emotional battle that comes with spina bifida (and the related conditions). Jacob’s multidisciplinary team (MDT) includes: neurosurgeons, neurologists, paediatricians, physiotherapists, occupational therapists, speech and language therapists, children’s nurses, disability social workers, GP and pharmacists. I’ve probably forgotten some because it genuinely is a big MDT. How fortunate we are to live in Northern Ireland where this all comes as part of the NHS.

Since it’s October, and spina bifida awareness month (also the triplets birthday month!), the biggest message I want to communicate in this blog is HOPE.

Please contact Shine as soon as possible, they are a spina bifida charity and offer fantastic information and support. You can adapt, you will manage and you will love your baby no matter what diagnosis he/she has.

It was a brisk Wednesday morning as I walked my daughter home from school. Her cheeks were flushed and her face smiling as she told me about her day. By the time we reached home less than ten minutes later I was crying.

Wednesday is PE day. The one day of the week my daughter dreads. Some people thrive at sports, my autistic daughter isn’t one of them.

As she held my hand she began to tell me about PE that day and I braced myself for tales of not being picked again or how she fell over or how she couldn’t roll or kick the ball, all stories she’s unfortunately told me time and time again. But today was different; today she was animated, emotional and excited.

‘PE was great today’, she started, which made me smile straight away. That was a rare statement in itself.

‘We were playing rounders (similar to baseball). We were put in teams but there was only one of my friends in my team. I know sone didn’t want me in their team. They never do mum. I can’t catch, or run or bat so I understand. Everything was ok to start with, well not really as I couldn’t catch or run or bat as you know. But then it was my turn to bat.’

She stopped as we waited to cross a road. I had no idea what she would tell me next.

The girl in the other team threw the ball. I missed it. She threw again. I missed it again. But then a friend in the other team started chanting my name. Others in her team joined in too. I tried so hard to hit that ball mum, but I couldn’t. I missed again. Three times I missed and I was ready to walk away when the girl behind me, a girl in the other team, stepped forwards and put her arms round mine.’

We paused to cross an opening to a garage. My 11-year-old continued.

‘She had her arms and hands over mine mum and they were still chanting my name. The girl threw the ball a fourth time and the girl behind me helped me hit the ball! Then I had to run mum. You have to run to the next area before the other team get the ball there. I can’t run. But I tried.’

By now my eyes were already watering as we reached our street.

‘The children on the other team were still chanting and cheering for me. I did my absolute best mum, but when I looked over I saw something amazing. See the girl with the ball mum, well she had caught it and she was coming towards me but she wasn’t running fast like she should have. She was running in slow motion to let me get to the hoop before she did.’

She paused as we reached the gate of our house.

‘The other team lost so I could win. I’ve never won in PE until today. It felt so good.’

So many told me that mainstream school might not be right for my daughter. They said she might be bullied or not be included and she’d struggle to make friends. In fact she couldn’t be more accepted or included. That day I knew that despite her sensory difficulties, her eating disorder, her severe anxiety, her selective mutism and her autism, that mainstream has been 100% right for her.

Not only that but it’s been right for every other child in her class too.

I don’t remember much of my school days, but I know my daughter won’t ever forget that PE lesson for as long as she lives.

Growing up in the 1980s, I went to a Comprehensive school that was, to put it bluntly, feral. I was one of the library monitors, and so got to spend lunchtimes away from the war-zone of the yard, sheltering among the bookshelves. Many of the books in there were leftovers from the school’s former days of glory, when it was a Grammar School for Young Ladies.

Amongst this treasure trove of relics from the 1930s, 40s and 50s I found several books on etiquette, crisply worded hardbacks detailing the rules of good manners, behaviour and communication governing every conceivable situation a person could find themselves in (including when fast asleep in the privacy of your own bedroom. Did you know it’s rude to sleep with your mouth open? I can’t remember now if it said you should tie your gob shut like a corpse or not).

Well, it detailed almost every situation.

Nowhere amongst those starchy pages of instructions on how to address Archbishops, reigning Monarchs, tradesmen, and your fellow WI members did it once mention how to behave when meeting a Disabled person. Perhaps it never occurred to the authors that there was any need, after all, weren’t they all living in institutions or confined to their sick beds at home? Or perhaps, more reasonably, it was self-evident that people should simply treat them with the same tact, courtesy and consideration as they would any other of their neighbours, colleagues, fellow citizens?

It never occurred to me to notice this omission at the time – I was too young and callow, but a recent encounter while out walking in the woods with Freddie and my husband brought it to mind. If the behaviour of this couple, who, no doubt, consider themselves to be well-behaved, well-mannered and polite people, was typical of what is considered acceptable etiquette when meeting a Disabled person, then how would these books have worded the instructions that informed their behaviour (and that of others who act similarly – this encounter was not a once-in-a-lifetime incident)?

It would probably go something like this (it should be noted that my tongue is very firmly in my cheek here):

Chapter 35: Encounters with the Handicapped and Afflicted

1.  Imagine one is abroad for a relaxing stroll with one’s spouse in some bosky dell, when one espies a family approaching from the opposite direction. As they draw near it becomes apparent to you that the child of the family is afflicted by some malady as evidenced by the wearing of iron bars affixed to the legs by an arrangement of stout leather straps. As a meeting of the ways with these unfortunate people is now inevitable, what is the correct course of action to take? Under no circumstances should one make eye contact. This might result in their curse or misfortune being transferred to you. It is, however, perfectly acceptable to stare at the strange devices on the child’s legs.

2.  As you draw level with them (and still being careful to avoid eye contact) one should turn to one’s spouse and ask in a clear, well enunciated voice: ‘What are those things? Do they straighten the legs?’ The child himself is probably deaf and almost certainly mentally defective and will not understand your words at all, but the parents will feel flattered that you have taken an interest in him.

Seriously mate, if you meet us again, anywhere at all, next time just nod and smile, and don’t mention the legs, because I’ll tell you one thing for free about those devices – they don’t render him, or us, deaf. So, no matter whether your comments are directed at us, or are simply just about us, keep them to yourself and walk on by.

Go home and ask Dr. Google.

Some people say they wish others would ask questions about their children’s disability, they would welcome it as a chance to educate. I can’t imagine any situation more awkward than marching up to a stranger and asking ‘So, why does your kid wear those things on his legs?’

I don’t welcome random questions from strangers — my son doesn’t need to have his differences commented on in public. As far as he is concerned wearing calipers is no different to wearing glasses – they’re just a thing he needs to help make life easier. He is blissfully unaware that they make him an object of curiosity for others. And you, as an abled person, do not have an automatic right to have your curiosity satisfied at the expense of my son’s confidence and comfort.

On 6th October it was World Cerebral Palsy Day.

3 years ago it wasn’t a day we had heard of let alone celebrated.

“There are 17 million people across the world living with cerebral palsy. Another 350 million people are closely connected to a child or adult with cerebral palsy. It is the most common physical disability in childhood. Cerebral palsy is a permanent disability that affects movement.” (WorldCPDay.org)

Our family falls into that 350 million people statistic and Annabelle is one of those 17 million people statistic.

“World Cerebral Palsy Day is a movement of people with cerebral palsy and their families, and the organisations that support them, in more than 75 countries. Our vision is to ensure that children and adults with cerebral palsy have the same rights, access and opportunities as anyone else in our society. It is only together, that we can make that happen.” (WorldCPDay.org)

We strongly believe that children and adults with cerebral palsy SHOULD have the same rights, access and opportunities as anyone else. We are a long way from achieving that but we the only way to make that happen is to fight for it and that is what World Cerebral Palsy Day is all about.

Every year there is a different theme. World Cerebral Palsy Day 2020 was a day to Make Your Mark!

There is no doubt about the fact Annabelle has already made her mark on so many people and we couldn’t be prouder of what she has achieved and the beautiful little human she has become.

Cerebral palsy doesn’t define her, she is her own amazing person, but it is something she will have to live with every day of her life and there is no getting away from that, so, we will always take a minute or two, on 6 th October every year to reflect on what she has achieved despite the challenges cerebral palsy throws her way and will let her know how proud of her we are.

This year Annabelle had conductive education on 6th October and showed cerebral palsy that she is and will forever be a fighter!

Conductive education and therapy are a big part of Annabelle’s life and it is just ‘normal’ to her.

As the years go by and she gets older and her understanding of cerebral palsy and what it means will grow. 6 th October will mean more and more to her each year that goes by. She is more than a statistic, but we will ensure she is proud to be part of the statistics and that she does something to raise awareness of cerebral palsy on this day each year!

The subject of ‘caregiver burnout’ seems to be a hot topic currently; in my humble opinion, it is a rare individual who is a fulltime carer who isn’t running on empty most of the time. And thanks to the pandemic, the vast majority if not all of us are way beyond what would typically be thought of as burnout.

I can only speak about how it affects me, other carers/parents may recognise some or even all of these symptoms, and I am certain there are many, many more.

Constant headache, mood swings, holding it together (just) until alone in the dark when my mind can wander to those darker corners where my greatest fears lurk… what if tonight is the night we lose him? What if he catches covid? Fears I’m not doing enough; not enough therapy, not enough playtime. Splitting my day between full-time working and full-time caring is becoming unbearable; I feel that I’m failing as a mother and as an employee. I can’t think straight, struggle to make decisions and just want someone, ANYONE, to take over so I can finally just sleep and rest.

And I’m not having to do this alone either – my husband (Sams Daddy) deals with Sam’s meds, feeds and does his best to entertain the little chap while I face down exhaustion/worry/guilt that I’m not doing more and try to get as much work done as possible. All the while on seizure watch. There are parents out there doing this entirely on their own.

If any are reading this, know that I am in awe of you and that you are not alone.

This is no magic wand, supplement or piece of advice to get any of us through this pandemic and the burnout we’re experiencing; it’s like hanging onto the end of a knotted rope hanging over the abyss. All any of us can do is just hang on to that knot for dear life.

For us, there is a small light at the end of the tunnel and that is that school restarted. Sam’s school is only small, the staff have done everything humanly possible to ensure the children are going to be safe, and social distancing isn’t a problem. He needs to get back to his friends and his routine. His seizures have been horrific over lockdown due to the disruption in routine and boredom; I’m as nervous as when it was his first ever day at school, but I know he needs this. And so do I.

October is not only time for spooky decorations and trick-or-treating, but it is also a month for awareness. For families like my own, a very important awareness that most have heard about but may not know too much about. October is Spina bifida Awareness month!

Spina bifida is a birth defect in which a developing baby’s spinal cord fails to develop or close properly.

This defect occurs in the early weeks of pregnancy and is usually not diagnosed until the second trimester screening. There are three types of spina bifida ranging from the mild form to the most severe: Spina bifida occulta, Meningocele, and Myelomeningocele. Those living with Spina bifida occulta may not even know they have it, until something prompts an x-ray or scan of the lower spinal cord. It can often present as a large patch of hair over a dimpled area on the lower spinal cord.

Meningocele is when a sac of fluid comes through an opening in the baby’s back. This sac does not include nerves and is closed. Myelomeningocele, which is what our Oliver was born with, is the most severe; in which the protruding sac contains part of the spinal cord and nerves. This sac can be open or closed. Because Oliver’s sac was opened during my pregnancy, his spinal cord and nerves were subjected to damage by amniotic fluid and even physical trauma by moving around in the uterus.

For myself, it is important that I bring awareness because this is a diagnosis that is very misunderstood, and doctors still have much to learn about it.

There is little known indications for what may cause Spina bifida. It does not mean that mom did not take her prenatal vitamins (which contain folic acid aimed to prevent neural tube defects), it does not mean she was dieting prior or during pregnancy (“robbing the baby of nutrients and vitamins”), and it also does not mean that it is genetic (which most assume).

There are so many things that people assume with a spina bifida diagnosis, but most times it is far from the truth. Spina bifida is known as the snowflake diagnosis, because no diagnosis is the same. It may affect the same level on the spinal cord as another person, but the affects could be so different.

One thing I do know, is that the assumption that those living with spina bifida “have no quality of life” is FALSE! These babies come out fighting and continue fighting throughout their life to go above and beyond what is “expected” of them. Even if your child never takes his or her own steps, even if they need assistance breathing or eating, even if they blessed our lives for a short time here on Earth; they are true superhero’s!

I was laughing to my husband tonight after the kids went to bed, I am slowly turning into “that” mum! The one that celebrates everything, every birthday, Shrove Tuesday, Mother’s Day, Easter, Father’s Day, Halloween, bonfire night and I am ashamed to say I started talking about Christmas in September.

If I am honest, I’ve been talking about Father Christmas all year to my 3-year-old. We have 3 young girls who I cannot wait to share every seasonal event with them! I think I probably need an ASBO going down the supermarket seasonal aisles; it is like being in a sweet shop!

I have been good so far and purchased just one pumpkin in the weekly food shop, my eldest daughter Grace has been carrying it around the house the last few days telling anyone that listens she has a “SPOOKY PUMPKIN WHOO” tonight we have finally carved it. I had this wonderful idea after tea when everyone was still at the table we could explore it. I had roughly planned it out in my head it was going to be some sort of sensory sensation, grabbed some kitchen utensils and got stuck right in, had the washing up bowl at the ready to chuck the pulp and seeds in for everyone to explore!

Anyone else ever forget how strong pumpkins smell? How slimy the pulp is? How 1-year olds like eating everything? Also, how the same 1-year-old twins have no patience after 5 minutes?

We quickly carved the pumpkin before someone swiped a knife off the table to “help” popped a candle in the orange hollow and hid it in our dark bathroom with no light on! Then we went on a “spooky hunt” looking for the lit-up pumpkin within all the rooms with the lights off and curtains shut, each room we went into I made spooky sound effects and everyone shrieked and giggled!

Everyone was in awe of the pumpkin lit up over the bath, such a simple moment but everyone was captivated for at least 10 seconds! When we got ready for bed we kept the pumpkin on in the bedroom with a few Halloween songs on, chucking pillowcases over us pretending to be ghosts, dancing away to the Scooby doo theme tune and belly laughing. At bedtime Grace asked “can we do this again tomorrow mummy it was so much fun?”

It then struck me when I sat down, it wasn’t the commercial plastic fantastic toys they want, they are just the props to the scene, it is the quality time that made it awesome, the bonding, eye contact, communication, just different activities to break up the mundane of everyday life! We even joked to dad when he came home from work that there is pumpkin pie in the oven and dad pulling a big face and protesting for everyone to giggle and be in the joke!

With all this ever-changing advice and regulations with Covid 19, it is the year to get creative and enjoy life in the safety of our own homes! Take the pressure off of going to events and places if you’re not comfortable, a few simple activities at home can be just as effective.

I have already fallen down a rabbit hole this evening online looking at Halloween activities at home and cute outfits to play spooky scavenger hunts in the garden, obviously whilst picking off pumpkin seeds and pulp off my kitchen chairs and adaptive seating!

Sawyer needs both of his hips fixed. One is totally out resulting in a 4-inch difference in his leg length. We have been battling with this decision but after meeting with all doctors and therapists they agreed it’s best for him. We decided to proceed forward and schedule his surgery for January 2020.

In December Sawyer got influenza B (despite his flu shot), pneumonia as a result of influenza and GI upset due to the pedialyte we had to give him to keep him hydrated. This resulted in not only a 3-day hospital stay but also a loss of 5 full pounds. He was very skinny and we could not imagine putting him through the 7 hour surgery and 6 week body cast that followed for his hip surgery.

We knew it was the right decision and selfishly I was relieved. I was anxious about the surgery.

Fast forward to this month and we finally got a new surgery date. We have been quarantined since the pandemic, avoiding social outings and being overall very careful. We are beginning to see pain and adverse effects due to the hip being so far out. The surgery was scheduled for October 2nd, notice I said “was”. I spent 3 weeks not sleeping, being extremely anxious and stressing about the surgery.

Four days before his surgery Sawyer’s twin sister, Quinn, came down with a cold. We not only kept him away from sister as much as possible but we sanitized before we got close to him after touching her. The day before his surgery he came down with a cold. It’s taken 10 days for him to get over it and unfortunately, we had to cancel surgery AGAIN.

It’s been a stressful and emotional rollercoaster.

We go from feeling extremely anxious to relief to stress to being anxious again. It’s not easy but we are trying very hard to look towards our faith and as our doctor said “Sometimes it’s God’s way of saying not to.” We are planning on rescheduling his surgery because we are finally seeing some pain and signs that it is necessary, unlike a year ago. Things will happen when they are meant to and often times the hardest part of being a parent is letting go and holding on to faith.