Friendship’s Thief

I was recently talking with my son about one of his diagnoses.

Together, we were making a list of things that this particular diagnosis cannot take from him.

At one point, I said “Well what about friends? Your diagnosis isn’t able to take away friends and your chance to make friends, right?”

To my surprise, he said yes, it does take away friends.

Since our conversation, I have thought often about my son feeling that this piece of him—a diagnosis—has the power to take friends from him.

His feelings are valid.

His words and his perspectives are worthy of being heard and honored.

I am thankful he shared his thoughts with me and chose to collaborate with me and give permission for others to hear his experiences.

While our conversation about what this diagnosis means to him and for him was lengthy, it was the comment about friends that has continued to stand out to me.

When I place myself in the shoes of my son, I must admit that he is right.

According to much of what he experiences, he has every reason to believe that his diagnosis takes friendly relationships from him.

For years, he has watched people avoid him, misunderstand him, underestimate him, and not try to include him.

He has seen those who should have been on the front lines of knowing him and loving him—those who should have been his built-in friends—turn the other way.

He has also seen me relentlessly advocate and speak up, though it has not been enough to guard him from the ignorance and at times, straight-up cruelty he encounters.

Many times, ignorance is chosen. That is nothing short of cruel.

The thing is, all of this really has little to do with his diagnosis.

He may have very few friends, but it is not his diagnosis that has that kind of power.

While it may appear that his diagnosis is what steals from him the opportunities to have connections, play dates, and precious, close relationships, a diagnosis is nothing more than that—a diagnosis.

My son remains a complete and remarkable human being that any soul would be all the better for knowing.

So, if not his diagnosis, what are the actual thieves of these relationships my son aches for?



Unwillingness to change and grow.


Fear of the unknown.


Comfort over compassion.

My son’s diagnosis is a powerful thing and an aspect of him that is worthy of being noticed, learned about, and considered.

But it is not—nor will it ever be—mighty enough to steal way relationships.

It breaks my heart and makes me angry that he has been made to feel this way.

The truth is, those who know—and I mean truly, truly know—my son adore him.

They find him to be one of the friendliest, most delightful people in their world.

They are keenly aware of his presence, they allow him to beautifully take up his intended space without apologizing for it, and they feel a constant attraction to him intermingled with a consuming desire to include him. 

They make changes on his behalf to make things more accessible.

They make time for, ask for, and honor his thoughts, words, and opinions.

Those who know him, love him.

Those who know him have also taken the time to earn this privilege by embracing a willingness to learn, a slaying of prejudices and judgements, and a desire to step out of their own comfort zone for something (someone) beyond than selves.

The rewards they both reap and gift in return are priceless.

I apologized to my son on behalf of every person who has ever made him feel that a diagnosis—rather than their own failures—keeps friendships away from him.

I am so thankful for the friends, the irreplaceable relationships my son does have, few as they may be.

We have found friends in the most expected places and family where DNA is not shared.

For this, we couldn’t be more thankful.

As an advocate and a mom, I will never stop fighting to open eyes and smash down barriers.

I will—without apology—embrace opportunities and place my son in the midst of circles where he will be himself unashamedly while extending an invitation for the opportunity of a lifetime—his friendship.

At times, we will together feel the hurt of rejection and ignorance.

And then we will stand back up, move forward, and pour our energy into finding and delighting over the rare gems along the way.

10 Things that parents of kids with Special Needs wish you knew

Raising a child- or children with special needs is often a lonely journey.

Unless you’ve experienced parenting a child with disabilities yourself, it’s hard to understand what families like ours go through daily.

For people on the outside looking in, it’s often confusing.

They’re afraid of saying or doing the wrong things or just don’t know how best to support the family.

We don’t expect everyone to be mind readers, but there are some things that families like mine wish people knew about us.

  1. We’re not superhuman.

As much as we’d love to think we have it all together and are even flattered by this assumption, the truth is that we’re just regular people who have been dealt some extra parenting challenges.

We have good days and bad days. I promise we don’t have a secret stash of capes in our closet!

  1. We don’t want our kids to be used to make people feel better about themselves.

We love it when people acknowledge our kids and want to be around them, but we don’t love it when done for the wrong reasons.

We want people to be around our kids because they genuinely want to be around them, not because they think they’re doing them some kind of favor or want to make themselves look good.

  1. We’re not living in fear.

We’ve heard this one a lot this past year during the pandemic. We’re not living in fear; we’re living in reality.

Our reality is that COVID-19 could do some severe damage to our ten-year-old with chronic lung disease. It could be deadly for him.

Taking extra precautions, wearing masks in public, and laying low even more than usual isn’t us living in fear- it’s us trying to keep our son out of the hospital at all costs.

  1. Words matter.

We know most people are only joking when they throw the “R” word around, and they don’t mean any intentional harm, but as a parent to a child with an intellectual disability, it cuts to the core.

It’s derogatory and offensive, even when it’s used in jest.

  1. We still like to be included.

When you have multiple kids with special needs, you end up declining a lot of invites.

Eventually, people stop inviting you. It’s understandable, but it also hurts.

We’re still here and like to know that we haven’t been forgotten.

  1. We need your help teaching your kids about inclusion.

Kindness and tolerance of people who are different is a learned behavior.

We don’t mind educating people who have questions – even blunt questions from the younger kids, but when you hurry your kids away from ours and teach them that it’s ok to be afraid or poke fun at them, you’re sending a really inappropriate message.

  1. We don’t have the time to chase you.

Relationships evolve and change, but if you’ve drifted away and made no effort to keep in contact after a couple of outreaches on our part-the ball is now in your court.

We don’t have time to chase people who aren’t interested in keeping in touch.

  1. We’re terrible at asking for help.

We don’t expect people to go out of their way to help us, but we’re so grateful when they offer.

Sometimes during a medical crisis, we don’t even know what we need until someone drops off or delivers a meal or does some everyday tasks that we’ve completely forgotten about.

  1. We don’t need you to fix things; just listen.

Sometimes we just need to vent. We aren’t asking for solutions or unsolicited advice- we just need someone to listen to us with a non-judgmental ear. 

  1. Our child’s diagnosis doesn’t define them.

Our kids have many diagnoses, but we don’t want them to be known as “the girl with autism” or “ the kid with the trach.” It may be part of who they are, but it’s not all they are.

They’re just two kids who happen to have more challenges than most, and like everyone else, want to be accepted for who they are.

One year later…

It seems a bit mad to think we’ve been living in this covid limbo for 12 while months.

The week before the schools closed we assessed the situation and decided we felt safer with our boys at home.

With Thomas’ health needs we were concerned that he would be very vulnerable to this mystery new illness and decided not to take a chance.

I remember the reply from my eldest’s school, after I’d emailed them to advise them of our decision.

They suggested that we review in a week.

I felt a surge or panic then.

What would we do in a week? Would it be any safer? How long could I keep him home before I got fined?

It seems silly now with hindsight.

A week later schools shut and he didn’t return until September!

So we started the pandemic feeling uncertain and anxious.

Just how dangerous was this virus? Could we protect our family? Could we get a food shopping slot?!

And even back then, in March 2020, moments of sheer panic – has the world irrevocably changed for our family? Again?

The months rolled by, the days blending together.

Just the five of us, and later Thomas’ carer.

It was like the longest chill out weekend ever. Like many I baked. A lot. And I sorted and tidied a lot.

And we survived.

See we’ve already lived through one event where our envisioned future was ripped away in a moment.

We’ve been living with fragile health for five years, where a simple cold results in HDU stays.

We’re used to isolation and being stuck at home.

It was like sliding our feet into a worn pair of slippers.

Even as we hesitantly started the new year, it still felt like we were walking well trodden ground.

Grateful when the schools closed and we could retreat safely into our familiar and safe little family bubble.

And now here we are.

Over 12 months later. We’ve spent the best part of the last year shielding.

My eldest and Thomas managed the Autumn term at school, while myself, my husband and my youngest stayed at home to reduce our exposure as much as we could.

My Eldest went back to school 2 weeks ago, it’s strange being stuck at home without him, but the school run is a welcome reprieve and a great way for me to dip my toes back into society.

Thomas is still shielding until the 31st of March.

The government says that shielding can end at the end of this month, because all vulnerable adults will have been offered a vaccine by this point.

I’m not really sure where that leaves those of us with clinically extremely vulnerable kids, especially young ones like Thomas who is just 5.

Is it really any safer for him out there?

As we approach the end stages of this pandemic we remain uncertain and anxious for our boy.

I still have moments of panic that our world has in fact changed for good.

Behind the blue curtain

Sitting in a hospital cubicle as I wait for my child to be assessed in the emergency department this evening, I can’t help but overhear the family in the next bay to us.

The doctor is questioning what has brought them in today.

The little boy, I’d guess at less than a year old, has picked something off the floor and swallowed it.

The doctor is checking him over.

She asks the questions I guess she asks every typical patient. “Is he normally fit and well?” “Any medical problems?” “Were there any problems at birth?” “Was it a normal delivery?”

His Mum answers the questions in the way I wish I could answer.

The little boy is usually fit and healthy, no medical problems and a normal delivery with no issues.

A lump forms in my throat as I feel a pang of jealousy. I’m jealous because I wish that was me. I wish I was that Mum.

No, I don’t wish that my child had swallowed something as I can only imagine the overriding fear that family must be feeling until they get the all clear that their child is okay and can go home.

But I wish that I was sat in hospital knowing what was wrong and knowing that in all likelihood, in the long term my child will probably be okay.

It may sound selfish, sometimes it’s difficult to articulate without sounding like I’m lacking in empathy.

I’m really not.

It’s just that sometimes a mist descends in front of my eyes and I can’t see beyond the pain I’m feeling as a mother of a very complex child.

Then I’m thrown back into reality.

I’m a firm believer that everybody has a right to feel however they feel about whatever situation they find themselves in.

Just because my situation feels huge to me doesn’t take away the worry that the family in the next cubicle must be going through.

I silently give myself a talking to, reminding myself I cannot possibly know how that mother is feeling as she waits to hear if her child will be alright.

Yes, my child has lots of serious issues but the chances of him ever swallowing an object he’s found on the floor are less than likely, given his high tone means he has very little control of his limbs to bring anything to his mouth.

Despite the difficulties I watch my child face on a daily basis, I’ll regularly be on hand to listen to those challenges my friends face with their children, often as they follow up with “but it’s nothing compared to what you’re going through.”

That’s where I usually step in and say “but it is not nothing, because what you’re feeling is very real and very painful to you and just because I’m facing different challenges that may look bigger, it does not mean you don’t have the right to feel angry or sad about the challenges you are facing.”

So as I sit eavesdropping into the story of the family in the next cubicle I try to tell myself I have no idea what they are going through beyond the blue curtain and I need to stop comparing our story to theirs.

But for that moment I find myself angry again.

Not at that family. I’m angry at our situation.

I’m angry that it’s my child who sustained a devastating brain injury at birth that has left him with serious lifelong problems.

I’m angry that we spend so much of our life in hospital and I’m angry that I watch my child suffer horrendously every single day with no cure or magic fixes.

I find myself once again crying and saying to myself “why me? Why my son?”

As I overhear the doctor tell the family she isn’t concerned as the child seems alert, happy and has experienced no significant side effects, therefore will more than likely pass through whatever he has swallowed naturally so they are free to leave, tears fall down my face as I know for us it’s a very different story.

We are about to embark on an inpatient admission that will involve lots of tests, questions, investigations and time away from home.

Even then I will still be taking home a child who will never be truly okay.

Eventually, I find myself stuck in a war with my own mind, feeling guilty for even comparing our situations for the truth is I have no idea what that family behind the blue curtain are going through.

They could be in a living nightmare and this evening could’ve been just a very small drop in a very large ocean.

Three more families come into the cubicle next to us who explain their children have no known previous medical issues. 

I listen intently, wondering if there may be a family who are just like us.

As the evening draws on and I listen to all of their stories, one child has had a fall and bumped their head, one is vomiting and subsequently diagnosed with a gastric virus and one is struggling to pass urine, I find those feelings of anger and sadness passing as they are all told they can go home.

I sit with the painful feelings and start to relax and find myself listening and wondering all about these families and what their stories really are.

Because the reality is none of us really know what is truly going on behind the blue curtain.

Conscience, Pricked.

At the end of February I received an invitation to book my first dose of the Covid vaccination.

My immediate reaction was to feel guilty.

Guilty that I would be vaccinated before my husband, daughter and eldest son, who all have asthma, and who all fare very badly with any type of respiratory infection.

Guilty that I would get my jab before friends of the same age who wouldn’t get their invite for probably another couple of months, despite us all being in the age bracket where the risk of serious illness and death from Covid begins to rise.

Questions were asked in the family: ‘Why is she getting it now? There’s nothing wrong with her’.

It’s true, I am usually fit and healthy.

The reason I got invited to book a jab was because I am the primary carer for a disabled person — my son, Freddie.

But still I felt guilty. I felt like I was queue jumping.

Then I developed a throbbing cellulitis infection in my right hand: the skin was hot, bright red and tight, the tissues so swollen that I couldn’t bend my fingers.

I couldn’t grip a toothbrush, a knife, a button, or a pen, I struggled to open tins, jars and packets, and even moderately warm water felt scalding hot to my poor ravaged hand.

Suddenly there was a whole host of small everyday tasks that I just couldn’t do – all the little fiddly aspects of personal hygiene, dressing, and food preparation that, thanks to hypotonia and hypermobility, Freddie needs help with.

Luckily it happened before he went back to school – I would have struggled to push him in a wheelchair.

Luckily, also, the infection was at its worst over the weekend, so there were other people available that I could call on to help him.

I simply had to tell them what help he needed – because one of the things Freddie most needs help with is communication and, in that respect, no one can help him as well as I can, because no one knows him, his speech, gestures, and behaviour, as well as I do.

A course of antibiotics soon sorted out the cellulitis, and it ended up being no more than an annoying inconvenience for a few days (although I still can’t bend my right index finger as fully as my left).

But the experience did bring home to me the fact that I care for someone who cannot manage without my help, whose health, wellbeing, and welfare would suffer if I were to become seriously ill, incapacitated, or dead.

I no longer feel guilty.

I was offered the jab for his sake, not for mine, and I have taken it, primarily to protect his health and wellbeing.

Purple Day—Epilepsy Awareness and You

The month of March is a heavy one for me.

In March 2014, I lost my big brother who I was incredibly close to.

My brother lived with Epilepsy from the time he was very young.

I grew up waking to the sounds of the brother who shared a room with my brother who had epilepsy yelling for help with a Tonic Clonic seizure.

I have many memories of feeling helpless as my brother seized and we wondered what the damage would be this time.

I feel like I have always known the names of Epilepsy medications and the steps of seizure protocols.

It was just a part of life. Epilepsy is what ultimately took the life of my brother.

While March brings me back to the memories of losing my brother, it also is the month that holds Purple Day—a day set aside for growing awareness and support for those who live with Epilepsy.

My experiences with Epilepsy did not end with those of my brother.

I went on to become a special education teacher to students with Epilepsy and then a mother through foster care and adoption to many children who have Epilepsy.

Epilepsy, in many forms and severities, has been a part of every single day of my life.

 If my brother were here today, I would call him up on the phone and ask him to share what he thinks the world ought to know about Epilepsy.

Since I can’t do that, I will do my best to honor his legacy and share my perspective as a sister and caregiver to those who have Epilepsy.

I have often said that while awareness days can be incredible, educational, empowering experiences, they are worthless unless a growth in awareness leads to action.

I have compiled a list of simple steps anyone can take to grow in both their awareness and actions associated with Epilepsy.

Listen to those with Epilepsy. Ideally, those who are diagnosed with Epilepsy should be the ones standing behind the megaphone during awareness months.

Make a point to seek out someone with Epilepsy and ask them what they wish you knew.

Stop using comments about seizures casually. It is all too common for people to toss around casual remarks related to Epilepsy: “Oh man, turn off that crazy light or I might have a seizure!” “Dude what are you doing? We couldn’t tell if you were dancing or having a seizure!”

Phrases like these are offensive, hurtful, and encourage a mindset that portrays Epilepsy (a life-threatening condition for many) in a way that is demeaning and disrespectful.

Pause before jumping to conclusions when you hear the word Epilepsy. Epilepsy comes in many forms and severities. For many, it is life-interrupting and life-threatening.

For others, it may be less disruptive and may come in the form of occasional absent seizures or be fully managed by medication or other treatments.

Do not assume that if someone has Epilepsy, their life is in immediate danger.

Also don’t assume they might just space out sometimes or have everything under control with medication.

They are the teacher, you are student. Seek to be educated, do not assume.

-Never choose fear or avoidance first. Perhaps you are a teacher or scout leader and have a child with Epilepsy placed in your class or troop.

Maybe you have had a new employee joining you at the office and learn that she has Epilepsy.

Whatever the situation, suppress the urge to ask for different circumstances (a transfer, etc) or declare yourself unfit to be the guardian/co-worker, etc for someone with Epilepsy.

Push the brakes and choose first to be educated and then to accept this as an opportunity to learn something new and help a human being be loved, accepted, and safe.

-Learn basic seizure care so you can help if you ever encounter a situation. While taking a class about Epilepsy/seizure response (this is included in many First-Aid classes) can be incredibly helpful, you can also easily do an online search to learn the basic steps to responding when someone has a seizure.

Take a few minutes to learn these steps and then stay refreshed on them so that if you ever find yourself in a situation with someone who has a seizure, whether you know them or now, you may be better prepared to assist.

-Don’t ever, ever tease. Never make fun of someone who has a seizure of any kind. If you do so truly unknowingly, give a heartfelt apology and learn from your mistake.

-Ask how you can accommodate. If you have the opportunity to be associated to any degree with someone who has Epilepsy, ask how you can make the environment more accommodating.

For example, if you are a supervisor and hire on someone who has Epilepsy, ask to be educated about potential triggers, rest needs, seizure response needs, and other accommodations.

Then follow through with those and require others do to.

The bottom line for Epilepsy awareness comes down to this: Kindness goes a longer way than anything else and gives birth to humility, education, and change for the better of all people.

Choose to learn from those who have Epilepsy and then adjust your thinking and actions accordingly.

Our purple prince

I wrote a blog about epilepsy back in November 2020 for awareness month. It’s rolled around now in March for the Epilepsy Society’s “Purple Day” on 26th.

I volunteered to write a blog about it and then honestly became completely stumped.

Don’t get me wrong, I’m under no illusion everyone reading this now has read all my blogs.

One of the huge benefits of this type of writing is you can “dip in and out” as you want or are able to.

So do I simply repeat what I said then? What do I want people to know about Epilepsy?!

When I was working as a nurse in a home for people with neurological disabilities, I supported several clients who were known to have epileptic seizures.

I’d studied this in uni and seen it quite often during clinical placements since I specialised in Learning Disabilities.

Why? Well, the more severe a learning disability is, the more likely it has been shown that the person will also have epilepsy unfortunately.

It was something I felt confident in so ended up volunteering to be my work’s “epilepsy link nurse” to liaise with the community and hospital teams who also shared care with our clients.

I left work to have my triplets back in 2014, which seems like just yesterday in so many ways yet also a whole other lifetime!

When our little boy was born with spina bifida, our world was turned upside down.

As a triplet and a preemie, he was facing an uphill battle as soon as he was born weighing just 2lbs 10ozs at 32+4 weeks gestation.

We were incredibly fortunate then that he had a very “smooth” stay in NICU, “graduating” to SCBU fairly quickly for growth only prior to his back closure.

After the initial operation on his back, the pressure built up in his brain and he was diagnosed with hydrocephalus and whipped off for another surgery to fit a ventriculoperitoneal shunt to control it.

It was then we were told he was more likely to develop a learning disability and/or epilepsy.

It wasn’t the biggest shock ever then when he was diagnosed in 2018, but wow, did it hurt!

How the world had also changed even in that short time since I was practising.

The old terminology of “simple partial” and “complex partial seizures” seems to be replaced with “focal aware or unaware”.

What a steep learning curve we have had despite my own previous background in epilepsy.

So what would I tell parents of newly diagnosed children?

Firstly, know your enemy.

Epilepsy is a wildly variable condition and the best way to combat this is to study it as much as you can. 

When I say study it, I mean learn what it looks like for your child.

What does a typical seizure look like for them? Is there anything you can identify as a trigger? What helps / doesn’t help them recover? Do they need emergency medication and if so what dose/timing works best?

Any pieces of information you can give the neurologist will help put the jigsaw together to form a more complete picture.

The second thing I’d say is find your people and lean on them, hard.

This is not an easy journey and one that should definitely not be underestimated.

You will need support that you can rely on and people who will be gentle when you go a little off the deep end from time to time (thank you to my people who have stayed through the storm!).

I know this advice is given often so I am only repeating wiser people’s words but really…you will need help so that you can fight with renewed energy everytime you’re up against a wave of seizures or particularly “big” ones etc.

The third (and final) piece of advice I’d give is to stand your ground.

People will sometimes try to offer what they feel is a solution and whether they are a neurologist or a family friend…don’t follow that if you don’t feel right about it.

My husband and I don’t stay away from home, and we don’t go far during the day either for fear of Jacob needing us.

There are people who say we need a break and despite them being completely right, I am most settled when I am near to him in case of prolonged seizures.

I don’t want to leave him, not yet.

There have also been medical professionals who have asked silly things like “are you sure that’s a seizure?”, “does he really need rescue meds?”, “at least it isn’t a big epilepsy like tonic clonic seizures” etc.

The bottom line is I am more than willing to take advice from the qualified professionals but I do not comply without question.

Push your teams to find better answers if you feel more avenues need explored, as long as you are able to accept when it’s time to go with their advice.

It’s the little things

Yesterday as we were watching TV, Sawyer reached over and held my hand.

All parents know the warm feeling they get when their child does something sweet like this.

It feels so good to be reassured that you, as a parent, are doing a good job.

For Sawyer almost all his communication is non-verbal.

He can’t say “I love you” (yet).

I hope that some day he will be able to say it with his eye gaze and maybe even his voice.

He says two syllable words but most sound the same.

He shows love by smiling, laughing, kissing and now holding hands.

The absolute hardest part for us aside from the obvious medical stuff is trying to figure out what Sawyer is thinking.

He is incredibly bright and we are finding more and more how bright he is.

He knows so much and hears everything we say.

He’s been using his eye gaze to tell us more and that has been incredible.

I still find myself doubting and questioning what he is thinking or trying to tell me.

I wish I didn’t question it but sometimes it’s hard to believe what is right in front of you.

For years we have relied only on Sawyer’s non verbal communication.

When we ask a question he gives us a big smile for a yes.

We give two choices and he follows with a smile when he chooses.

That has always been how we communicate.

Now when he says things like “all done” when the teacher asks him to work more, I think, can he really be saying that?

It’s almost unbelievable to me how bright he is.

He has overcome so much and now is being snarky and playing jokes with more than his non verbal.

He’s using his eyes to read words that are in front of him!!

It’s been so fun to see.

As of right now it’s just one and two words but I have no doubt that at some point he will be saying full sentences and asking for more of what he wants.

For now we will soak up all the little words and ways that he communicates love and his wants and needs.

How do I advocate effectively and successfully?

It’s been a difficult few days.

Actually, it’s been a difficult few weeks and months.

When we have good days, it makes all the difficult days feel so worthwhile.

Most of the time I just sail through the bad days the best that I can in the hope that better days are around the corner.

I’m currently wondering if indeed better days are around the corner and if they are, how big that corner is.

Right now it feels huge.

I’m typing this blog from a hospital ward, exhausted, frustrated and despondent.

My son is on his 20+ admission into hospital at less than three years old.

Frustratingly I don’t even know what’s wrong. I just know he’s distressed and this distress has been increasing over the past week.

As he is non-verbal he is unable to tell me what is hurting.

As his tone in his limbs is so high he’s unable to show me where the pain is.

So with Jaxon it’s all guesswork.

Whenever I bring him into hospital, the doctors and nurses look to me for ideas.

They want me to tell them what is wrong so they can fix it.

I’m generally quite intuitive where Jaxon is concerned.

I feel I’m almost the yin to his yang.

If he’s suffering I normally know why and I can usually work out how to fix it.

This time however, he’s got me entirely perplexed.

I have ideas, oh I have plenty of ideas.

But this time I have so many ideas that it’s almost impossible to articulate to the professionals what I feel needs investigating for fear that I’m guiding them away from where the real issue is.

I’m not ashamed to admit that I feel as if I’m not able to advocate for my child in the way I would like.

I have friends who have children just like Jaxon and I am in awe when I see how they are able to get things done in ways that look almost completely effortless, I know this is not the case at all, they are genuinely very good at what they do.

I look to them often for inspiration, I want to learn how I can be more like them and in turn be a better Mother to my child.

I’m almost jealous when I see how determined they are to fight for their children.

It’s not that I’m not determined or that I won’t fight for my child, that couldn’t be further from the truth.

I just don’t always have the confidence to stand up and say this is what he needs in a way I deem to be completely effective.

It may be down to inexperience, it could be lack of confidence, I’m not really sure.

I just hope as time goes on I get better at being the voice he really needs me to be.

I feel as if I’m almost letting him down, my inability to get his medical needs met successfully one hundred percent of the time is something that I beat myself up over regularly.

I’ve never been a confident parent.

I had hoped to slide into parenthood effortlessly however in reality I tripped up over my own feet and landed face first into a world I never could’ve imagined.

To the outside world it may seem like I’ve got it all together but the reality is I really haven’t.

Not in the ways I would like at least.

Anxiety cripples me whenever we have an appointment that I’m not prepared for or when an unexpected hospital admission arises.

I worry that I won’t be heard or that I will have a battle to be taken seriously, thus delaying the urgent treatment my child needs to be better.

I’m a natural worrier so having a child like Jaxon only increases that worry tenfold.

There have been times when I’ve been able to say I’ve successfully advocated on behalf of my child and if it were not for me, he would be worse off.

But those moments are rare. Even when I know I’ve done okay as Jaxon’s Mother and his voice, I can’t always celebrate it.

Instead, I just concentrate on what I could improve on.

I’m not sure that’s necessarily a bad thing as if I aim to be better as both a parent and an advocate then that can only be a good thing.

I want to be a louder voice for my boy.

I want to get his needs met first time, every time. I want to be the strongest advocate I can be for him.

I want to say I did my best for my son and it feel like I have genuinely done enough.