Rewind 365 days and where were we?

We were confined to a hospital cubicle with a 10 and a half week old, medically fragile tiny human who had already stared death in the face more times that I’d care to imagine.

We’d spent all but nine days of those 10 and a half weeks in hospital.

I was miserable, I was mentally suffering with the effects of what happened to Jaxon at birth, I was struggling to bond with this beautiful boy I’d helped to create.

I was tired. I was scared.

I looked at Jaxon and I felt nothing but overwhelming sadness, guilt and pain.

I had no idea how I’d ever be able to adjust to a world with a child who had a life limiting prognosis when I’d spent so long simply preparing myself for the difficulties of dealing with sleep deprivation and breast feeding.

Little did I know the grand scale of adjusting that I’d have to do.

I wasn’t sure I’d survive. In all honesty I’ve had more meltdowns than I’ve had hot dinners this past year and that’s not an exaggeration.

I’ve been close to throwing in the towel on numerous occasions because I felt like I wasn’t good enough or that Jaxon would be better with a family more equipped and more prepared to deal with his complex needs.

A family who chose to take on this painful yet rewarding challenge perhaps could give Jaxon everything that he needs and so much more.

Despite these intrusive and painful thoughts, with the love and support of those closest to me I persevered.

It’s been a turbulent year of hospital stays, new diagnoses, surgery, chest infections, missed milestones, heartache and emotional torment.

But amongst the lows, I’ve learned such fierce love on a scale that at times it frightens me. I’ve accepted that what I planned for may never be and I’ve learned to appreciate and more importantly, love the child I have because he is the true definition of a miracle.

Especially given that on paper, he shouldn’t be here, not with everything he’s faced since his arrival 14 months ago.

I’ve become so passionate about raising awareness of children like Jaxon.

I advocate for Jaxon like no other, shouting and screaming until I’m blue in the face trying to access services that he needs to give him the best quality of life possible.

It’s tough going at times and I’ve hit many a brick wall along the way, but for the boy that never gave up on life, I must continue no matter how difficult it all seems.

So as we step into a new year and a new decade how do I feel?

I feel fear.

Not the crippling fear that I felt a year ago.

That was a combination of new mum fear with the added medical challenges that we face that were still all so new and so very raw.

I’m more in control of that now, I’m slowly but surely becoming an expert in all of Jaxon’s medical needs.

I don’t feel intimidated when we have to go to hospital, I believe instead the nurses and doctors trust my instincts first and foremost, after all, nobody knows Jaxon like I do.

But I fear that Jaxon has so many uphill battles yet to climb.

I fear that he’ll suffer so much through his life and I fear that his life could be cut short because of his medical complexity. Jaxon is living with uncontrolled epilepsy, Infantile Spasms.

That on its own comes with a whole bucket of fear.

So as 2020 begins, I’ll try to deal with the fear as best I can.

I’ll try to enjoy the happy times more. I’ll try to put the fear away in a box and live each day to the fullest that I possibly can.

If not for me, for Jaxon.

Happy New Year

Ethan turns 18 on the 18th of May this year.

In any young person’s life this is a major milestone; in Ethans life this is just as major but it will be celebrated very differently than the majority of 18 year olds.

I have a few ideas on how we will celebrate this with Ethan but for now, I am counting my blessings.

I wanted to pause before I begin booking, researching, inviting and planning.

18.

I could say something funny like I’m too young to have an 18 year old but I don’t feel that way. I can remember the reality of having a baby at the tender age of 20 and thinking how cool it would be when he was this very age, 18. I remember also noting how ‘young’ I would be! Not even 40.

I imagined a whole life, I imagined a whole different life. I also imagined a whole different son and a whole different mother; honestly, I don’t believe I am the only parent to admit that.

The son that was placed in my arms almost 18 years ago is not the same son that sits on my lap almost 18 years later. In fact,my son has never stayed the same – he was always changing, always bringing us into a new ‘normal’, not by choice but through genetics.

He wasn’t growing up or learning new things; he was fighting hard to retain what he already knew and his syndrome only allowed him to learn new skills from birth up until roughly 4 years old.

We were to be considered lucky if he made it to his teenage years.

18.

Despite Hunter Syndrome stealing my son throughout his life, my son is the best teacher I have ever had- and I have had some great teachers.

Despite the syndrome affecting everything from his mobility to his brain, my son continues to teach.

Now, I know you may read this and think, ‘aww bless her, isn’t she great for seeing such positivity in such a shitty situation’ or something along those lines but I assure you, my son has taught me well.

18 Reality Checks, I know to be true thanks to my son and all he goes through.

Life can change in an instant without warning and without your consent- in fact your consent is never required. Accept that.

Lean on those that are in your life, don’t waste time chasing those that left when the shit hit the fan; they are obviously only paper thin anyway.

Accepting things as they are and facing your reality is not defeat. Hiding from reality is far more painful than sitting with it and acknowledging your situation.

Be blunt when you have to be. People tend to do what you ask when you are blunt with them. (Ethan used to say ‘not you’ when he saw a particular nurse come at him, or if a person he didn’t particularly liked called in…and it worked, the person stopped calling and that nurse handed him over to a different nurse!)

Let yourself feel it all; the happy, the sad, the lost, the lonely, the fear, the despair, the love, the laughter…..choosing which feelings to feel will make you ill.

There is always, always someone who surprises you by just showing up and being there.

People don’t always say the right things or do the right thing according to your own actions and reactions – remember that’s on you, not them.

Poop is just poop, we all have it, we all make it and yes it is sometimes smelly. It’s not shameful! Poop is important, it can tell us a lot.

Specialists and Doctors are human, they are not machines or superhuman – speak to them the same way you would a friend; if you disagree with them, you tell ‘em!

Life isn’t fair. It just isn’t.

Accepting some harsh truths can save you a world of pain in the long run but crumbling to your knees when you are first met with those truths is perfectly normal – just get back up, always get back up and if you can’t; ask for a handrail, a push or even a kick up the bottom – there are plenty of people that can provide that for you.

Laughter is absolutely priceless. There isn’t a nicer sound.

It is lovely to have the recordings and the pictures – but don’t forget to be present too – if it’s a big event, pay for a photographer.

Say yes to things you’re not sure about. If I thought long and hard before decisions I made since Ethans diagnosis I would never have been on Don’t Tell The Bride, nor would I have taken part in a documentary all about Ethan(and kiddies like Ethan) called ‘Ireland’s Miracle Children’ and I most definitely would not be writing publicly – and that’s just a few obvious ones!

Take actions to ease your worries – get a camera in your child’s room if you’ll sleep better, pop in unexpectedly into the center or school your child attends, chop the food extra small or don’t – do whatever eases your worries – no one judges you harder than you, sadly.

Every day make note of a happy moment -write it down. You’ll find that there are quite a few – the simplest of things can become treasured moments.

Hospital stays are fecking lonely. Hospitals stays outside of your own county are beyond lonely – make the visit. Don’t ring and ask, don’t presume they are sick of visitors – just show up. It’s those kinds of action acts that can give a heartbroken parent that little lift in the bleakest of times – and don’t worry, the won’t remember what you said, they’ll remember that you came.

A messy house is a sign of a happy home – there is a difference between messy and dirty though. Let the mess build and hire a cleaner two mornings a week for the rest!

Life is indeed too short.

Fresh starts, don’t we love them?

A new year begins and everyone wants to talk about working on themselves, their goals, their careers, etc.

I hate to bear bad news but the changing of a calendar year is arbitrary; we can set goals for ourselves any time we want.

That second half is the good news! This year I realized that having goals helps me see my son’s progress, so it would probably help me, too.

Here are some specific goals I’ve set for myself this year.

Take more pictures with my kids

This is a priority. I’m usually behind the camera, not in front. I’m going to get over my weird guilt about asking strangers to snap a photo so that I can have more visual memories with me in them!

Return messages to medical or education team members within two days

This goal reminds me that I need to respect other peoples’ time more. I usually fall into thinking that “I’m just too busy” to return calls or e-mails, but it’s simply not true. Every evening, before I settle into recreational time, I will return any messages outstanding.

Set boundaries with my friends

I have the best friends; they are not demanding, judgmental, or anything other than understanding and kind to me and my children. It’s natural to want to spend a lot of time with them! But arranging meet-ups last minute stresses me out. Regular play dates, on the same day each week, will help us feel less anxious.

Attend to my basic needs every day

This one should go without saying, but honestly I do not take very good care of myself. And that doesn’t make me holier-than-thou; on the contrary, it’s very unwise. When I neglect my own needs for respite and attending to my interests, I begin to resent my role as a caregiver. I resolve to find time each day to do something good for me, whether it’s reading a good book, going to bed earlier, exercising, or doing something creative.

Write down when we have a good day

This is crucial. It’s so easy to get bogged down in the bad days, so I need a visual reminder of when something good has happened! I’d love to look back at the end of 2020 and read about all the wonderful things that we experienced, big or small.

Hopefully, I can stick to these goals and make this year more meaningful.

Christmas has come and gone, with all of its celebration, joys, and maybe some trials and tribulations thrown in for good measure.

We’ve said goodbye to the old year and cheered in the new; but how that makes you feel might well depend on the kind of year you’ve had, and any expectations you may have for the year ahead.

In the world of additional needs parenting, unpredictability comes as standard.

As Tom Hanks’ character reminds us in the film ‘Forrest Gump’, “My mom always said life was like a box of chocolates. You never know what you’re gonna get.” Well, what did you get in 2019?

You may have had a year filled with blessings, with delightful and positive steps forward as you have cared for your child or young person.

Maybe they have coped really well with difficult situations, adapted well to change, or made a breakthrough in a previously difficult area for them.

Perhaps you look back on the year with relief, with tears of joy, with deep thanks for all that it has brought.

Or maybe you’ve had a hard year; a year of setbacks. A year where it seems to have been a constant battle; one step forward, two steps back.

Maybe you’ve seen regression, challenge and struggle.

Perhaps you look back on the year just thankful to see the back of it; your tears are tears of grief as you think of all that has changed for the worse.

In reality, like me, you will probably look back on the year that is ending with a mixture of both of these feelings… recognising the good things that the year has brought, while touched with sadness for the things that have changed for the worse.

In our case, we’ve seen a year where James has developed his personality, we’ve seen joyful times together, seen successes, and enjoyed seeing James growing up (he celebrated his 17th birthday in June).

This joy was tinged with sadness as James still spent much of the year struggling to leave the house, including for school, although compared to the previous year we’ve seen some improvement in this.

With all of the emotions that looking back on the year stirs, it is easy to look at things only through our own eyes, in our own strength, from our own perspective.

And if we do that, we can be crushed by the hard things that have happened, overwhelmed by the challenges we have faced, allowing the good and wonderful things that have happened to be blotted out, erased by the pain of the difficulties we and our children experienced.

But let’s listen to what others might be saying to us, even through the pain, and be encouraged by the affirming words that they share… often it is others that see the positives that we can miss.

It is through the storms of life that we can sometimes see friends and family, maybe even medical, school or social care professions, working in our lives the most; if we have a faith we may lean on that too, and it is through the challenges that life brings that we are moulded into the person we need to be for our child.

Are we willing to be moulded? Or do we resist, wallowing in our self-pity and being defined by the difficulties we and our children face, rather than thinking about how they might shape us positively to serve and help our child and others?

So, with these thoughts in mind, what will we take into this new year with us?

Will we drag the chains of the struggles and trials of the old year with us into the new? Will we allow the failures, regressions and setbacks of the last year define us and our child?

Or will we use these experiences to shape us positively for the year ahead… to bear our scars as symbols of where we have been, what we have endured together, the experience we have acquired together, to take into the future to help us, our child, and others, to navigate through another year,

As the new year resolution slogan goes… ‘Be more awesome than last year…’ You were awesome last year, you are awesome now, you will be awesome in the year ahead… and you don’t have to create all of this amazing awesomeness on your own, you journey with others on the same road as you too!

Of course, there will be tough times in the year ahead, there will be times of rejoicing too.

But whether we are crying tears of grief or joy, if we share it with each other, if we trust in each other, there are people who will be there with us, fighting for us, in our corner, that have got our back.

And that, for me, means that whether this year is a Happy New Year or not, I know that me and my family will make it…

How about you?

As I walked my just turned 11 year old daughter home from school I asked her about her day. She seemed a little down and withdrawn and more quiet than usual.

It wasn’t until after dinner that she began to talk to me.

I asked if she had any homework and she dropped her head and went quiet.

I wondered if she had something in her bag that she didn’t want me to see or whether something had been said to her or she had been given a row by her teacher.

As I pulled out her homework folder and sat beside her she slowly began to open up.

Quietly she said: ‘Mum we’ve to think about what we want to do when we are older.’

I looked at the note in her homework diary and it simply read ‘we are working on a research project about our future careers. Please talk with your child about what they would like to do and what they might need to do to achieve this.’

I still didn’t know why my daughter was so sad so I plainly asked her: ‘What would you like to do when you are older then Naomi?’

With tears filling her eyes she answered emotionally, but boldly:

“Care for my disabled brother.”

She then told me what had happened at school:

‘Mum, the teacher asked us to write down what we wanted to do when we are older. I wrote down ‘care for my disabled brother.’

One of the other children in my group saw what I had written and laughed. He said that wasn’t a proper job and that made me sad.

We then had to use google and find out how much our job would pay. I typed in ‘what is a carer paid’ and wrote down the answer.

I remember it was £66 something a week but then I looked at what everyone else had written and that made me sad again.

Next we had to look at what qualifications we needed for our job. I found out to care for my brother I don’t need anything at all but I thought that must be wrong. It said I didn’t need to go to college or university and all the others did and that didn’t feel good.’

Still very tearful she talked about her twin brother and how he can’t talk at 11, how he can’t use the toilet yet, can’t read or write and how he had had major surgery for a brain tumour and how she helped him get better.

We talked about all the skills needed to look after someone as complex as her brother and how intensive this was at times.

She fully understands that he will always require 24 hour care all his life and how important it is that he is kept safe and well.

She already, at just 11, knew how important it was he had the right medicine at the right time and that he should never be left in the bath in case he had a seizure and had to be supervised when eating in case he choked.

I have never asked her to be his carer nor have I ever suggested she should aspire to be this when she leaves school.

She wants to do it because she’s extremely close to him and adores him so much. If this is what she wants to do then I support her unconditionally because, unfortunately, I won’t live for ever and that’s a fact.

With tears in her eyes and red cheeks she lifted her head and looked at me.

‘Mum, why don’t people care about carers like you? Why are they paid so little and don’t need any qualifications? It doesn’t seem right to me.’

It doesn’t seem right to an 11 year old because it isn’t right.

It doesn’t just make my daughter feel sad it makes me feel so very sad too.

Why are those who care 24/7 for the most vulnerable in our society treated so poorly?

It really shouldn’t be like this at all.

Your child has been diagnosed with a condition and immediately you turn to the internet.

You probably read about numerous therapeutic interventions that may treat this condition, a clinician half way across the world who specializes in this, a specific diet or therapy intervention that has been shown to help some children with this condition, parent’s blogs or Facebook groups with a plethora of information.

What should we do?

First, as a physiotherapist, I’ll caution you that not all websites contain accurate information, so be careful where you’re looking.

Ask your physicians and other medical professionals for reliable resources.

As the parent of a child that has any medical condition, it is important that you understand the pathology and the long term effects of this condition.

It will definitely be surreal as you sit and listen to a physician explain the condition.

If you don’t understand what their saying, ask them to repeat and explain in it different terms. As a lay person, you may be unfamiliar with the medical terminology that is used.

Knowledge is power, and this will increase your ability to advocate for your child and their needs.

There will be numerous decisions to make, now and moving forward.

Be straight forward, and ask people to explain to you what they’re doing and why they’re doing it. Don’t worry about seeming ungrateful or annoying those people who are helping with your child.

Professionals will applaud your vested interest in your child’s care and hopefully they will initiate being more informative.

You may be referred to numerous specialists to confirm the diagnosis or create a differential diagnosis.

It’s beneficial to have one source to see all of your scheduled appointments (and those of everyone in your family).

This will prevent you from overbooking or overscheduling yourself during any day or week, and from creating schedule conflicts between professionals.

At the beginning of this journey it may be helpful to connect with friends and family for house chores, carpool, and respite breaks as needed.

Despite the turmoil occurring in your own life, people you know will show up because they care about you and this little person in your life.

Let them in, to your comfort level. It takes a village, and you’ll feel the benefits of creating your own little village, early on!

Being a parent is probably the most challenging and most rewarding job you’ll ever have in your life.

This may be overwhelming, nonetheless as a parent it’s amazing how strong we become when a little life depends on us. If you’ve read nothing else, let me leave you with these thoughts

Knowledge is power! It takes a village! Stay calm and march forward!

Sometimes as parents of children with special needs we get so caught up caring for the child who rely on us for everything and forget we have other kids too.

Well I wouldn’t say forget but we figure since their able to do for themselves they don’t need us as much.

As a parent that has other children as well as my son who has cerebral palsy, epilepsy and autism I sometimes forget they need me just as much as he does.

I try my best to make sure that I give them just as much attention as I give my son, but the truth is its not easy.

I always feel guilty about not being able to do as much with them as I would like to especially with them being girls.

And although it doesn’t seem to bother them because their response is always at least we get to do things it really does bother me.

Whenever we go out, I always must consider what can we do that Jaylen can be included in.

His favorite thing is water, amusement park rides and riding go carts.

So that’s where we spend a lot of our time at.

We’ve tried different things that really interest my girls, but my son has meltdowns because it’s not something he want to do so we end up leaving.

Which is not fair to my girls, but I swear their the most understanding.

Even when I say well, we will leave Jaylen and Daddy home so we can do something that you guys want to do they’ll rather do something where we all can be together.

So, most times when I do get to spend time with them outside of homework it’s at night. Because Jaylen is usually in the bed at 7.

I love watching television with them and catching up on shows they like.

We talk about school while commercial breaks are on and whatever else is on their mind.

I found out my oldest daughter favorite television show is Fuller House and as a child one of my favorite shows was Full House. Pretty cool right!

Its important that we give all of our children our time even if you have to find time in between time to give it time.

There’s few things more frustrating when you’re trying to walk through the town centre or do some shopping than a complete stranger stopping you to ask for you to sign up to something to donate money every month.

Of course I understand it’s their job and somebody has to do it but during a two hour shopping trip I can be stopped by five different ‘chuggers’ representing five different companies.

I have donated to charities previously when I worked a full time job in health insurance.

Granted it wasn’t £100s but I did my bit for those who resonated with me or whose message I felt passionate about.

My circumstances mean that I’m currently unable to work, partly due to the fact I am now a full time Mummy to my beautiful yet medically complex little baby boy.

This means I have to count the pennies and I can’t afford to donate. So when somebody steps in front of me to ask me for cash I smile and say “not today, sorry”.

A few weeks ago I was walking through the town centre with Jaxon in his pram.

I heard a voice “excuse me, miss”. Here we go again, I thought to myself.

I looked up and smiled whilst continuing to walk on, I was tired after another sleepless night and I just wanted to do what I needed to get done. “Wait, wait you’re the first person that’s even smiled at me today” the voice said.

I didn’t know if this was part of his sales patter but something told me to stop.

“I work for the British Heart Foundation” he told me. I wanted to jump in and explain that he was wasting his time, I’m not in any position to donate and then we could both get on.

“Your baby is beautiful, does he cry a lot?” He asked me.

I thought that’s an odd question to ask somebody, especially a stranger.

Usually it’s “do they sleep well?” Or “are they good?” I didn’t really know how to answer. I could’ve explained that he’s not a big crier or I could tell the story of my little warrior, proudly to a complete stranger.

I chose the latter.

“He doesn’t cry much, he’s quite poorly” I started to explain.

I saw both the sadness and curiosity in the gentleman’s eyes as he looked down at my innocent little baby who knew life no differently than as it is now. “He was resuscitated at birth, he has brain damage. He has Cerebral Palsy, Epilepsy, a visual impairment and he’s tube fed.” I told him.

Information overload to this complete stranger of course but I watched and waited for him to say something.

“I’m so sorry. I don’t know what to say” he replied.

In my head I was thinking please don’t carry on with your pitch and ask me for money after I’ve just dumped a brief medical history of my child onto you.

“How do you do it?” He asked me.

I told him I just get on with it with the help and support from my amazing friends and family.

I told him how when it’s your child you just do. No matter what has happened or how you’re feeling, when your child needs you, you just do it.

There isn’t a choice or a second option. You do what you need to do for your child.

“You’re incredible” he said in awe. I just gave a weak smile and told him that I’m not.

I told him that I’m just a first time Mummy doing the best for my little boy, how I don’t always get it right but I make every decision for him with his best interests at heart.

Every decision comes from a place of love, a mothers love.

He took a genuine interest in Jaxon. He wanted to know what life looks like day to day and how he differs to his typical peers.

The conversation lasted only around 15 minutes but it felt like we’d talked for hours. I waited for him to jump in and try to encourage me to donate money.

He never did.

“Can I give you a hug before you leave?” he asked me. I could’ve cried as this genuine man, so full of empathy and kindness had taken time out of his day to hear our story held me and told me how his heart was full of love for the both of us.

He thanked me for stopping to talk to him. He told me I’d made his day.

The truth is I should’ve thanked him because not only did he prove me wrong when I thought the whole time he was asking me questions to soften me up to boost his commission, but he listened, he heard me and he allowed me to offload a portion of the sadness and the pride for my child that I carry on my shoulders on a day to day basis.

Maybe he went home, talked about the baby he saw at work that day who has fought battles far greater than anybody who hasn’t lived this life could comprehend.

Maybe he remembered us for the next few days as he went about his life. Maybe he thought about us as he saw somebody pushing a pram down the street. Who knows?

Me though, I said nothing about my encounter with this lovely man until now. But I haven’t forgotten the kind stranger in the town centre who, just for a moment, stopped and listened.

I doubt if I ever will.

This year its not just happy new year but a happy new decade.

This means in 2020 my gorgeous boy turns 10.

What a massive achievement for someone with a life limiting disorder.

He has defied so many odds and many dark periods. Yet he’s still here smiling away.

This year will hold lots of special celebrations for my boy. I wanted to celebrate it with a big party with everyone he knows surrounded around him.

Then I remembered he’s often overwhelmed by these situations that maybe that’s not the best idea at all!

I decided to have a search and see what things a ten year old does for their birthday.

Well that was a silly idea and It took me to nerf gun parties, gaming related parties or sports related parties.

Now Ethan loves watching a nerf war but can’t join in on his own, he doesn’t game at all and he may love watching a footy match but he wouldn’t have a party themed around it.

So I went back to things he does love. Ethan loves CBeebies, Toy Story, sensory play, Frozen and dinosaurs.

He’s had two dinosaur parties, a farm party, a sensory party with lights and messy play, a music party where we made instruments, a troll party, a big red car party and a Toy Story party.

All things he loves so what this year!

I want to make this year extra special because you only turn 10 once and its a big deal turning double digits.

Inviting his friends from school gets hard each year because they all have sensory issues and like him don’t like lots of people either.

We stick to his cousins and close friends children.

As his cousins get older though its hard to find things that they will enjoy coming to still. I mean they are all very good and will always do things with him to celebrate.

But wouldn’t it be lovely if they could all enjoy it on the same level.

We could go out and do something like bowling which he loves, or swimming or seeing animals. But all this could go wrong if it’s too loud or crowded.

Being at home gives him that safe environment and space to escape if he needs it. So a celebration at home will suit him best.

We will do a day out just the 5 of us with less pressure for it to be amazing.

Ethan loves birthdays. He loves balloons, singing happy birthday, opening presents, hearing the words inside cards and definetly eating lots of birthday cake!

So although his birthday celebrations may be different than other 10 year olds.

He will have a birthday that is perfect for him. That allows him to enjoy his celebrations in the way that makes him happy.