Space to Change: Raising Awareness

​Claire had been invited to speak at the AGM by Peter Murray, Centre Manager at Buttercrane Shopping Centre in Newry.

Peter has forged ahead with improvements to Buttercrane Shopping Centre following the launch of the Space to Change campaign by providing Green Level Space to Change for families with children who have toileting needs.

Buttercrane Shopping Centre added a large changing mat to their largest disabled toilet facility while they worked on further improvements to provide Orange Level Space to Change, which will include a height adjustable changing bench.

Peter was keen to help raise awareness of the Space to Change Campaign and invited Claire, as a local Space to Change Champion, to the AGM of the Northern Ireland Region of Shopping Centres (NIRSC).

NIRSC represents and promotes the shopping centre industry in Northern Ireland.

Claire spoke to the group of shopping centre representatives about the difficulties she faces when changing her disabled son Daniel, aged 6 on family days out and shopping trips.

My aim was really just to encourage the people I was talking to to think about some of the challenges that special needs families face and to ask themselves if there was something they could do within their shopping centres to make life easier especially around their toilet facilities.’

Claire also used the opportunity to raise awareness of the Changing Places campaign.

As a Space to Change Champion, Claire has focused on the venues that she visits with her family but as the Space to Change Campaign has grown and interest is growing Claire is being invited on a regular basis to talk about the campaign.

To help her do this, Firefly would like to recruit more Champions across the country.

If you are interested in finding out more about the role of a Space to Change Champion get in touch!

For more information about the Northern Ireland Region of Shopping Centres.

Visit our campaign pages to find out more about Space to Change.

Strangers In A Parking Lot: Raising a Child with Disabilities

We don’t have a placard yet, so parking has been tricky. 

I remove the wheelchair by lifting it out of the back of our van, try to squeeze between two vehicles, and load Adelaide.

Most days, we cannot fit.

So I leave the wheelchair at the back of the van, get Adelaide, and load her up just feet from passing cars.

When we are ready to leave, I usually park the wheelchair at the back, load Adelaide, then lift our wheelchair back up into the van.

We had already loaded up, when a woman and young man approached the vehicle next to us in the disabled van spot.

The caregiver and an aide started to lower the side lift from the vehicle.

They attached the transit straps.

We were just waiting.

We weren’t staring.

I didn’t offer to help, because they had everything under control.

It makes me nervous when strangers approach me.

I have my systems, so it’s just easiest to stick to our routine.

I wasn’t reversing our vehicle, because I wanted to stay out of their way.

But what I often see in the special needs community reared its ugly head.

This attitude that everyone is judging us, glaring at us, and being inconsiderate.

And that no one in the entire world knows our struggle.

As we just patiently waited in our van, she said in the most caustic voice, “You have no consideration. No consideration.”

This woman hadn’t seen me luck into a close parking spot with necessary room.

She hadn’t seen me load a non-verbal, drooling, bottle-drinking 30lb toddler into a carseat.

She hadn’t watched me pick up a 55lb wheelchair and put it up into my van. 

Fifty-five pounds.

All she saw was a mom sitting in a van.

And she had the nerve to call me inconsiderate.

“Actually, I am very considerate.

That’s why I am waiting and staying out of your way.

If leaving this spot is easier for you, then I will leave.

Because I am considerate.

Just tell me what you want.”

I don’t usually answer back to people when they are rude to me. 

I’m typically a ‘smile and nod’ mom.

But I was livid.

How dare this caregiver just assume that I am parked here not thinking of her situation.

She was completely wrong. 

I want to show grace to the tired caregivers, but I also don’t want to feed into this damaging behavior I see all around us.

She told me to “just leave already” and I carefully reversed.

My dear friend mentioned that she read two articles back to back.

One was about how people in wheelchairs (and caregivers pushing wheelchairs) didn’t want help from strangers and to be treated as less-than-able. 

The next article was about how people in wheelchairs (and caregivers pushing wheelchairs) don’t get enough assistance from strangers.

“Lyndse, I was so confused. Was I supposed to help or walk by?

The articles totally conflicted one another. So I decided to just do for a person in a wheelchair what I would want someone to do for me. I’ll ask to open the door.

They might think I’m rude, but I think it would be rude not to offer that. I appreciate when people offer to open doors for me.”

Here is a person with zero disabilities and typical children, experiencing what I see in our community on a daily basis. 

We are so set on believing that everyone is either trying to ignore us, belittle us, or feel sorry for us, that we miss all the people who are genuinely just trying to be helpful human beings.

And most people do not know what to do in situations that involve wheelchairs.

And if they try to read up on it, the opinions are all over the place.

I don’t want to become the person who insults complete strangers in a parking lot. 

This woman didn’t know that we are on the same team.

That I had just changed a diaper.

That I had just fed a snack one little bite at a time.

That a child had run from my daughter, probably afraid of the noises and vocalizations. 

She just assumed that I was unaware of her battle.

I did what I appreciate people doing for me…waiting to reverse until I have the wheelchair put away.

Sometimes, people ask if I prefer they wait or reverse.

“Waiting for a moment would be excellent, if you can spare a couple of minutes. Thank you.” 

I am polite.

Thankful that someone cared enough to ask.

But I don’t expect it either.

The world doesn’t revolve around us. 

I don’t want to become what I typically see.

An agitated mom who just assumes that all the world can’t relate to me and I have some right to be rude to another person.

I understand that we are stressed and fatigued and are sometimes lifting 55 lb wheelchairs into vans.

But when we disrespect others just because we think their lives are easier, we teach the world that being a caregiver to a person with special needs warrants bitterness and hostility. 

And then people who are just trying to be helpful are left on the sidelines confused and wondering how their considerate behavior was offensive.

I didn’t explain to her that I could relate, because it shouldn’t make any difference at all.

We were just two strangers in a parking lot, both fully capable of showing respect to one another.


Special Needs Family Days Out: Time for a change?

I haven’t need to use them myself and since we’ve been thrust into the bonkers world that is being a parent of a severely disabled child, my son has been little enough to be changed in the same way as his non-disabled peers.

This easier time is fast coming to an end.

We don’t anticipate our son to toilet train.

He is 13.5kg and quite tall.

His legs dangle uncomfortably over the end of the baby changers.

I’m not entirely sure on their maximum weight limit, but some do not look sturdy enough for my boy.

I’ve known about the Changing Places campaign for over a year, but haven’t acknowledged it as we could get away with changing him in baby changing facilities.

Changing Places is pushing for fully accessible toilets that truly meet the needs of 230,000 people in the UK with a range of disabilities, including 40,000 people with profound and multiple learning disabilities, of which my son is one.

To be an accredited toilet a Changing Place needs to have a height adjustable adult size changing bench, hoist system, enough space for the disabled person and 2 carers, a toilet that can have a carer on either side, a curtain for extra privacy, disposable paper to cover the bench and an appropriate bin.

As you would expect with a child with complex health needs, my son has a lot of medical appointments and a range of different consultants and professionals.

We recently had a very long day at Southampton General Hospital (SGH).

We travelled for an hour each way, went to three separate clinics, plus a blood test.

In total, our day out was nearly 9 hours long.

SGH serves 1.9 million people living in the local area, plus a further 3.7 million people across Southern England for things like neurosciences, cardiac and children’s intensive care.

They employ over 10,000 members of staff.

During our day my son needed his nappy changing a few times.

We know where the conventional disabled loos with baby changing are, and can often change him in the weighing and measuring room in the outpatients department.

However, we ran into some difficulty during this visit.

Firstly, outpatients was very busy, so we felt we couldn’t jump in and ask to change him when the staff had a backlog to clear.

Twice we went to the Parent and Baby room, which has a secure sideboard, it was locked and we couldn’t find a member of staff to open it.

We waited outside a disabled toilet which has a metal fold down changer, on 2 occasions, for 10 minutes.

Obviously people are entitled to go to the loo, disabled people with decreased mobility may take longer, but we began to suspect it was out of order and the sign had fallen off.

We went to find another baby changing toilet.

When we did we discovered the plastic fold down changer was in an alcove and there was no room for my lanky boy to dangle his legs.

It was made of plastic and didn’t appear as sturdy as the metal one we’ve used before.

We were left with two choices: the floor or, thankfully, a bit of sideboard by the sink.

We pumped for the sink.

Looking back now maybe we should have headed back to outpatients and asked them to help us.

Nearly every consultation room has a bed in it, although most of them were in use.

However, should we have to make a song and dance every time he needs his nappy changed?

Telling people he’s gone to the toilet, trying to find a room available? Would we want that if we needed to go for a wee?

What about a child who is older and more aware than my son?

Or an adult?

There is certainly no dignity in having to be changed on a floor, is there any more dignity in having to share personal details with complete strangers?

I was genuinely surprised that there is no Changing Places facility at SGH.

I would expect such a large hospital, covering such a wide area, to be at the forefront of patient care and disability awareness.

I can think of another 4 children I know under SGH care who require the type of facilities of a Changing Places.

Intrigued I went to the Changing Places website which has details of toilets.

There are 735 Changing Places in the UK.

A quick scroll showed me that 22 of them are in hospitals.

I’ve tried to find out how many hospitals there are in the UK to put this into perspective, but that seems to be a challenging and complex question.

Loosely, there are 168 ‘acute trusts’, which are a board that manage hospitals, in England alone.

Without having to sit down with a calculator I can see the maths does not add up.

Healthcare providers are not providing suitable changing facilities.

Yet, others are, and in some surprising places.

The nearest Changing Place to SGH is West Quay, a shopping centre a few miles away.

The Trafford Centre in Manchester.

Lots of libraries and leisure centres.

Some leisure centres even have 2; for poolside and dry side activities.

Car parks.

The Tate Modern.

The NEC.

An ASDA and a Tesco.

Glastonbury Festival brings in a mobile Changing Places Unit.

But not a hospital that serves nearly 6 million people.

The Changing Places that gets me really excited is at Alice Holt, a Forestry Commission wood in Hampshire.

We can go there as a family and go for a walk, things we’d planned to do when we discovered we were going to have a child but have found hard due to his needs.

Yet we can also go to a lovely room which is heated and change my son in dignity.

You can find out about the Changing Places campaign here and they also have a Facebook page.

Firefly has a campaign called, ‘Space to Change’, where you can learn more.

Special Needs Parenting: A Date with Ourselves

Quite unexpectedly a message appeared on my calendar app, inviting me to accompany a certain man of my acquaintance to a theme park.

I clicked ‘confirm’, and the date has been duly logged on my phone.

I’m nervous.

I hate heights. I hate being spun around and turned upside down. A theme park is going to push me right outside my comfort zone.

But I don’t want to be a kill-joy. I’m not too worried, though.

You see, the man I am going on this date with is my husband of nearly twenty years.

He’s seen me at my worst and at my best.

He’ll know if I really can’t handle something and won’t try to force me into it. It was exciting to get the sudden invite to do a thing more usually associated with being young, or a courting couple.

We didn’t know each other as teenagers.

By the time we met, in our mid-twenties, we had already taken our places in the sensible adult world; life was all about being responsible and setting ourselves up for the future. A future we couldn’t see.

It never crossed our minds that disability and ‘special needs’ would be part of the picture.

We are more responsible now than we ever imagined we would have to be. When Freddie was born, Daddy was studying for a degree as well as working full-time.

I was responsible for the majority of Freddie’s care, all the medical and therapy appointments, and our two other children.

We came to terms with Freddie’s diagnosis whilst also juggling a house move, the threat of redundancy and the additional needs of one of our older children.

It frayed the bond between us to the breaking point.

We were becoming strangers to one another.

We shared a house and children, but nothing else. The tremendous external pressures on our marriage almost had us beat.

Then we started to fight back. It began with a new bathroom. The bath looked huge. We speculated that it might even be big enough to hold both of us at one end.

Once Freddie was in bed we decided to find out.

It felt a little … mischievous … locking the door, filling the tub (with the plastic cover still on) and hopping in, trying not to splash the bare plaster wall.

Daddy put some music on, on his phone: stuff from the eighties, when we would’ve been in High School. Although we didn’t know each other then we listened to the same music.

We got talking about that. Then the conversation rolled on to something else … then something else … then something else … until we noticed that the water had become cold and soupy.

It was like when you go on a date, and by the end of the evening, it feels like you’ve known each other for years.

Except that we really have.

I don’t remember what we said, but I do remember the feeling – that neither of us wants to be single, neither of us wants to be separated from our children, and neither of us wants to throw away twenty-odd years of mutual history.

We are each other’s best chance of a happy future.

We can’t turn back the clock and start again from the beginning. But we can revisit our younger selves, remember who we were, and get to know each other again, as we are now.

Hopefully, we’ll both like what we find.

I’m a Bad Person Now: Raising Children with Disabilities

If I sit here, I can think of many things that now make me angry, or bitter that didn’t before. 

I don’t feel like a better person. Who knew that the words ‘I’m pregnant ‘ from friends and family would fill me with such strange emotions.   I started having children early; I was 25 when I had my daughter and already had a 5 year old son.  I know I sound like a terrible person but while my initial reaction is of course that I am so very happy for them, it’s quickly replaced with another feeling, one I cannot even name.  This is what goes through my head:

Friends weren’t having children – but now that we are all married and in our 30’s it’s like a baby boom.  

“I’m sorry I cannot talk about pregnancy with you, it’s because I don’t want to scare you.  I don’t want you to think that because you felt a pain in the same place I did that there is something wrong with your child.  I am sorry if I don’t jump for joy if you are having a girl, I feel jealous.

I know that you are already planning 20 years down the line and I don’t want us to be a reason that you imagine all the things that could go wrong.  

I know how much you are looking forward to ballet or gymnastics lessons and buying pretty girl’s shoes & dresses because I was too (dresses just don’t work when you can only crawl. AFO’s and pretty shoes, never going to happen!).  When your baby is born, I am truly happy for you but it’s also a reminder of what I wanted.  In six months time your child will have physically overtaken my daughter, they will be sitting on the floor, soon after you’ll be bursting to tell me all about how close they are to standing and walking.

Sleepless nights are hard, I know I’ve had 5 years of them.  

People always say their children are so clever for learning to walk, it makes me mad.   You’ll talk about how you can’t wait to get rid of the pram because it’s a nuisance to get in and out of the car.  After a while you will realise my daughter can’t do the trips to the park, long walks, soft play or bike riding – and then I know that we will see less and less of you.

I know, but a wheelchair is so much heavier and a lifelong accessory.  

You’ll worry they are not reading quickly enough or writing neatly enough when my daughter can’t hold a pencil.   I sound bitter and selfish, I know I am not a good person.  I do want you to be able to talk to me, I’m just sorry if sometimes I don’t respond in the way you expect me to, because I probably just want to cry and scream or tell you how I truly feel but this is your time to enjoy your baby.

Please know however, that I while I battle these internal feelings I am truly happy for you.

And really I know I wouldn’t change my daughter for the world.”

Why I Never Grieved Over My Child’s Diagnosis

Many parents will tell you that when they found out that their son or daughter had a disability or additional needs they too went through a process of grieving; grieving for the loss of the hopes and expectations they had for their child, and for their own life.

This is perfectly understandable; perfectly natural.

When we try to imagine our future, we all hold certain assumptions about how our lives will pan out.  These are usually based on the kind of lives lead by our families, friends and peers, though we may dream of achieving something different, something better.

When it comes to picturing our future children, the babies we see in our mind’s eye are regular, typically-developing, cherubs (just a bit cuter and more talented than other people’s, of course).

They reach all the milestones right on cue, they grow up and become independent, they have the kind of careers we could only dream of, and they give us grandchildren (but not until we’re ready).

For those parents who have a healthy child who falls victim to some devastating disease or accident the grief must be especially sharp and poignant.  For them ‘what might have been’ was once reality.  Their hopes were, at one time, tangibly within reach.

But when I was told that Freddie has Down’s Syndrome I did not experience this reaction.

I can honestly say, hand on heart, that I have never felt a single pang of regret for the boy he might have been.

Not once have I felt that we were cheated of the future he should have had. This is not because I am the sort of placid, saintly, or martyr-esque person who simply bows her head and willingly accepts every circumstance without question.

This is not because I had come to terms with it before he was born – having found out in early pregnancy that the chances of my baby being born with Down’s were very high.

I think this is because Down’s Syndrome is a condition that occurs at the moment of conception.

The extra chromosomal material that causes it is knitted into the fabric of every single cell, and always has been from the very first spark of life. Down’s Syndrome is as much a part of my child as the blue eyes he inherited from his father and me.

There is no Freddie without Down’s Syndrome.

The life, and the future, he has is the only one he ever could have had.

Why my Dad is a Superdad, by Freddie

He puts up with all my shouting, even though he hates loud noises.

Even though he is easily embarrassed, he read me a story on a crowded bus, so I wouldn’t get bored and fidgety. He took a week off work to look after me last half term (mum has gone back to University).

On the first day I was ill, so he took me to the doctor, gave me my medicine, rubbed cream on my rashy face, and to tempt me to eat he ‘forgot’ his dislike of fast food and took me to the Drive-thru. And he let me eat it in the car (don’t tell the others, they’re not allowed to).

He has always worked hard, so that my Mum could stay at home to look after us.

When I was born he knew Mummy would be needed at home more than ever, so he went to University as well as working full-time, so that if he ever lost his job there was a better chance that he would get another one. Even when the going gets tough, and he and Mummy go through a ‘bad patch’, he never gives up.

He tries very hard to make things right again.

But the real reason my Dad is a Superdad is because he does all this despite having had no example to follow.

You see, my Dad grew up without a father. He has no memory of him; the only thing my Dad knows about his Dad is that he left his family.

When my big brother came along, my Dad didn’t know how to be a father.

He knew it must a Very Important Job because of the size of the hole his own father left behind when he went. But what my Dad did know is that he wanted to be a presence in his child’s life, not an absence.

The rest he just had to make up as he went along. It would have been easy to fall into simply being a Provider, since one of the biggest legacies of his own lack of a father had been lack of money, and after all, he had no blueprint to show him what the day-to-day role of ‘father’ was meant to be.

Perhaps because he had no preconceived expectations of fatherhood it was easier for him to adapt to being a ‘special needs’ Dad.

Perhaps having no fixed idea of what a Dad was supposed to do made him better able to respond to what we each, individually, needed him to be.

And that’s no easy task: my big brother has Aperger’s Syndrome, he’s a bit socially awkward, and fiercely intelligent.

I have Down’s Syndrome, with associated developmental delay and learning difficulties, and my big sister is ‘typically developing’ (or a ‘typical woman’, as my Dad would say. Let me tell you, if she’s typical I’m staying right away from women).

Our individual needs differ widely; parenting is a complex business in our house.

But my Dad is a Superdad—because he knows that, special needs or not, the one thing that we all need from him is … him.

Not perfect, but PRESENT.

By a Special Needs Dad: Unanswered Questions, What Ifs and Escaping the Void

You can read it here: 10 Things You Didn’t Know About Special Needs Dads 

When I read over it at the time, I thought it just sounded like me rambling about things I wanted to get off my chest.

It was with much surprise then, when I got so many comments back from all around the world. It was lovely to see how much it resonated with so many people facing similar issues.

It meant a lot to me too and reassured me that I wasn’t alone in feeling how I did.

The comments also highlighted just how tough it can be for Dads whose children have special needs and how little support there is for those Dads. As someone much wiser than me once said ‘It’s good to talk’.

I think Dads are much less likely to share their feelings (myself included).

So I thought I’d have a go at some more rambling.

The unanswered questions 

I am so lucky to have two wonderful boys; my eldest is now six years old and profoundly disabled. The cause of his disabilities are still unknown, he’s simply classified as having an unknown genetic disorder.

My youngest son is four, thankfully he is unaffected by this disorder and is a typical lovable and mischievous little boy.

Where he differs though, is his amazing and unconditional love for his big brother.

Ever since he has been able to, he has helped his big brother and cared for him in a way that inspires and amazes his mum and I every single day.

He shouldn’t have to do this, but he just does; its human nature at its very best.

As he’s getting older though the questions are starting to come and they’re getting more difficult to answer.

Not always because the questions are harder, just that his need for answers is growing.

Last week we were sitting together, I’d just got home from work and he was watching some TV and telling me about his day at nursery.

Some of the older kids in our street were outside playing football. I could see him watching them and then completely out of the blue he turned and said to me ‘why can’t my brother walk?’ He’s asked this question before, many times, but I think it was just the context of the situation that hit me so hard.

I could see what he was thinking, I’m sure you can all see what he was thinking, you don’t have to be a child psychologist. The longing in his eyes hit me like a speeding train.

I stumbled over my answer, trying in vain to explain that all children are different. He’s four but he already knows that.

The real question is why? That’s one I can’t answer for him, or in truth for myself. I instantly had a feeling of guilt that I was somehow letting him down. I’m his Dad – if I can’t tell him why something has happened, then who can?

There are so many unanswered questions with regards my eldest son.

Will he ever walk?

Will he ever have meaningful communication skills?

Will we ever get a diagnosis for his condition?

What does the future hold?

Who will care for him when my wife and I aren’t able?

The list of questions is endless and it never goes away. I’rsquo;m in a much better place now. It’s over four years since we were given the devastating news about our son’s condition. No matter how long passes though, the questions are always there and very few are being answered.

The ‘what ifs’ 

Sometimes the most normal of situations can bring all the emotions back to the surface. I say normal, but let’s face it, very little about life with a disabled child passes for what most families class as normal.

We recently got tickets to take the boys to see their first football game. We called ahead just to check on wheelchair access, lucky we did.

It turns out we’d booked the wrong tickets, so we couldn’t bring our oldest boy, at least not in his wheelchair.

It was a health and safety thing, so fair enough; I guess we should have checked before buying the tickets!

Plan B, one of our friends has a little boy the same age as our eldest, so we agreed a kid swap! They’d look after our oldest boy and we would take theirs to see the game.

The ‘What If’ moment happened almost straight away.

Just seeing the two boys together, both as excited as each other, but with our friend’s little boy taking the lead role. The big brother role.

It’s a role that’s reversed in our family.

As we travelled to the ground, I was conscious of all the old emotions rapidly resurfacing.

What if things had been different?

What if our eldest son wasn’t disabled?

This would be the most normal thing in the world. A little brother excitedly holding his big brother’s hand as they started out on a childhood adventure together. I’m sure my youngest was blissfully unaware of all the thoughts rushing through my head but I still worry.

I worry that in his head’s he’s worrying and upset that his big brother can’t come with us and wondering what it would be like to have a normal relationship with his big brother.

Obviously, our eldest boy was not in the least bit annoyed at missing the game; in all honesty it would have probably been a struggle for him.

But as with all things, we fight to keep the normal. What if it was normal all the time?

The void we can’t escape

I’ve spoken to many parents and read loads of articles that describe the sense of loss, the sense of emptiness that you feel as a parent to a child with special needs.

I’ve tried to explain it to other people who aren’t in this position, but I don’t think I’ve ever managed to convey just what it is and I’m not sure if I will manage to now.

‘Void’ – noun – a completely empty space. In lots of ways that word, void, explains how many of us feel on a daily basis. It’s that sense of being robbed of the child you expected, robbed of all of your hopes and dreams.

As my son gets older and time passes, I’m learning to accept his disability.

It does get easier, but the void is still there.

I suspect it always will be; it’s compounded by the unanswered questions and what if moments. I’m on a mission though, to fill the void as time passes.

Regardless of his problems, my son gives my wife and I so much joy. He brings his own special and unique brand of love into our lives and we’re so lucky to have him.

I saw a quote recently that made so much sense: ‘In the hopes of reaching the moon, men fail to see the flowers that blossom at their feet.’ I’m not sure who said it but I think it sums up really well how I’m trying to cope.

I’m trying to come to terms with his disability and learning to have new dreams. Many people would consider his disability a disaster or a tragedy. In many ways that was me and quite often the questions and the what ifs try to drag me back there.

Slowly and surely though, I’m getting there, I’m learning to accept that it’s not a tragedy, it’s just a different life, one I hadn’t expected, but one that can be so rewarding in so many ways.

To all the Dads

I know everyone’s different and people reading this will be at different stages of their journey. Some will be starting out and struggling to see a way past the tragedy.

Others, I hope, will be on the other side, living their alternative life and filling the void.

Whatever it is for you and wherever you are, I hope you have a super Father’s Day with your son or daughter. You deserve it. Ramble over.

Happy Fathers Day!

To My Superhero for Father’s Day

You don’t have super human strength, but you are strong enough for both you and I to make it through therapy when I feel like I can’t do it.

Before I was born, mommy said that you would always talk to me through her belly.

Teaching me the ways of a jedi when you watched Star Wars, or keeping me updated on the score of a baseball game.

When you found out I would be a boy, you went on a mission to find a strong name for me!

Without even knowing at the time, what lay ahead of me, you knew I could tackle it all.

It wasn’t long before the doctors revealed to mommy and you how strong you both would have to be for me.

I thank you everyday for being so tenacious despite everything the doctors told you.

Mommy even told me you cried the day I was born, but don’t worry daddy, I wont tell your archenemy.

You may not have known it, but I remember when you would come into the NICU every night to read me a bed time story.

Stories of princes going to save beautiful princesses, or even stories on how to use the potty!

It sure was nice to hear your voice over the many beeps and alarms that went off.

When I came home you had to be very gentle with me.

Your strong hands turned into a soft blanket that kept me warm.

Your immense chest compared to my tiny frame became my snug bed I could just sleep forever on.

I even remember seeing someone as strong as you, crumble in the quake of a diaper change!

Now that I am getting bigger and stronger just like you, you take me on plane rides through the sky flying high in your arms.

Your the best support when I just have to keep my head up in therapy for five more seconds.

Things may come a little different for me, but you always seem to find a way to help me succeed.

With your future seeing skills, we know that one day I will have to be catheterized, will need assistance with walking, and still have those countless visits to the doctor.

But I am not scared daddy.

You say that you have never seen someone fight as hard as I have, but I have.

I have seen you go to work everyday so that mommy can stay home and take care of me. I have seen you work extra hours, just so that we could put a little more into savings for that special chair that will help me get around easier.

Above all, I see that you love me more and more everyday, ignoring that ever persistent fear of not knowing what may happen.

I am strong through you and my family!

You have shown me what it means to be able.

Marvel may not consider you a superhero, but I do daddy.

My superhero.

So I want to wish you the happiest of Father’s day daddy, and a big happy Father’s day to all the daddy’s out there standing tall for their children.

We love you more than words can express sometimes, and just want you to know we cherish every game update you share, every wrestling move you teach us, every extra inch of covers you can tuck us into at night.

Thank you daddy.