World Down’s Syndrome Day 2018 Part 3

The Down’s Syndrome Advantage is the phrase coined to describe the phenomenon observed by researchers in which the mothers of individuals with Down’s Syndrome exhibited higher levels of psychological well-being than the mothers of individuals with other kinds of intellectual or developmental disability.

In part one, we saw researchers had observed that the mothers of adults with Down’s Syndrome reported that they experienced less conflicted family environments.

Families of individuals with DS have been rated to be more harmonious and cohesive than the families of individuals with other IDDs.

But is there any evidence to support this perception?

On the surface of it, you may think not.

Studies show that couples who are the parents of children with disabilities or additional needs have a higher rate of divorce than couples who are the parents of typically-developing children.

However a study by Vanderbilt University examined the rates of divorce among families of children with Down’s Syndrome in comparison with the rates among families of children with other disabilities.

They found that while the rate of divorce among families of children with other disabilities was 11.2%, among the families of children with DS it was only 7.6%.

The same study also compared the rates of divorce among families of children with DS to the rates among the families of children with no noted disabilities, and what they found might come as a surprise to many – the rates of divorce among the familes of children with DS was lower even than those among the families of typically-developing children, which was 10.8%!

Another thing that study results do show is that in many regards the families of individuals with DS are alike to all other couples in some regards when it comes to divorce, in that they are more likely to do so if the couple were younger, less well educated than if the opposite were true.

But what would account for the lower divorce rates across all groups of parents of children with DS?

Other studies have suggested that the family members of children with DS show levels of well-being that are often greater than those of family members of children with other IDDs, and sometimes equivalent to those of the families of non-disabled children.

And while this, and the lower levels of parenting stress reported by the parents of individuals with DS might account for the divorce rates being lower among families of children with DS, what would account for it’s being lower also than the divorce rate among typical families?

Does raising a child with DS lead to greater communication between a couple, perhaps because there’s a sense that it’s the two of you against the world, advocating for, fighting for, your child?

Do they become more tolerant of each other’s imperfections as a result of accepting their child’s struggles and difficulties?

What is known is that the overwhelming majority of parents who have a child with DS report that their outlook on life has become more positive as a result of having a son or daughter with Down’s syndrome. Have they, then, come to look more positively on each other also?

I feel that as the twenty-odd-years-married parent of a nine-year-old with Down’s I ought to have the answers to this conundrum, or at least a deeper insight into it.

But I don’t.

I do know, though, that it is just one more reason not just to raise public awareness, and to advocate for the rights of people with Down’s Syndrome, but to celebrate all the good things they bring to the world, their local community, and their families.

Happy World Down’s Syndrome Day, everyone!

World Down’s Syndrome Day 2018 Part 2

The Down’s Syndrome Advantage is the phrase coined to describe the phenomenon discovered by researchers in which the mothers of individuals with Down’s Syndrome were observed to display higher levels of psychological well-being when compared to the mothers of individuals with other kinds of intellectual or developmental disability (IDD).

Maternal well-being was measured in terms of life satisfaction, quality of relationship with child, maternal pessimism about the future, and subjective caregiving burden.

I would rank myself as likely to score highly for psychological well-being based on those factors.

But what causes the Down’s Syndrome Advantage?

Are children with DS really easier to raise than those with other developmental disabilities?

Several possible explanations have been put forward:

Greater maternal age at the time of the birth of the child with DS, and, therefore, greater financial stability,

The fact that mothers of individuals with DS have greater access to syndrome-specific support groups which offer information and social support, which in turn leads to more adaptive coping,

Mothers of children with DS have more family support,than the mother’s of individuals with other IDDs.

Based on my own experience alone I don’t think that these factors fully account for the ‘advantage’.

Although, yes, I was a more mature mother, being nearly 41 when my son with DS was born, and already an experienced parent, which undoubtedly helped, it is not true to say that we were financially better off. As a family we’ve lived on one income for years, as we have an older child who also has additional needs and the solution which worked best for us was for me to be a stay-at-home mum.

There is no syndrome-specific support group where I live.

Although I am a member of several online groups, I find them an emotional minefield and so never seek advice there.

Any, “adaptive coping”, I do has happened organically.

I know of many parents of children with DS who will tell you that family are sometimes the biggest pain in the backside when it comes to lack of understanding or poor attitudes, and although my own family are understanding, what they can offer in terms of physical support or respite is limited, as they either live too far away, or are too elderly and frail to cope with any young child.

Despite this, I’m one of those irritating people who is pretty happy with my life, and positive about the future.

I don’t feel any great caregiving burden, and I think I have a really good relationship with Freddie, on the whole.

In terms of functional ability he still needs a lot of help with most things. Unlike a typical nine-year-old, his speech, though “good”, is nowhere near what you would expect from a child his age. Although, he will tell me, in a few words, that he has enjoyed his warm, bubbly bath, or his swimming lesson; he will thank me for his tea, too, especially if I have helped him scoop it up – which he seems to find rather an effort, possibly due to relatively poor fine motor skills.

He displays a great sense of mischief, mostly expressed physically.

In these various small ways we are able to have many positive interactions; I think THIS may well be the key to my own sense of well-being.

And the evidence would seem to bear me out.

It has been argued that the Down’s Syndrome Advantage may be due either to sampling bias, or to between-group differences in other factors such as maternal age, maternal education level, marital status, child age, family income, or other variables.

However, several studies found persistent evidence of the ‘advantage’ even after controlling for such covariates as these, suggesting that these factors alone cannot fully account for the phenomenon.

In studies which compared mothers of individuals with DS with each other, rather than with mothers of children with other IDDs, it was found that neither maternal age (at the birth of her child with DS), nor the level of social support she could access, had any significant influence on life satisfaction, quality of relationship with child, or pessimism about the future.

With regards to subjective caregiving burden the picture was more complicated, with many factors having an influence – the specific context of the caregiving context may be the most significant thing in this regard.

One factor that was an influence across all four measures of maternal well-being, though, was the behavioural phenotype of their child that is, the observable traits and characteristics.

It was found that those mothers whose children with DS exhibited a greater level of difficult or challenging behaviour would score lower on the measures of maternal wellbeing compared to the mothers of individuals with DS who exhibited fewer behavioural problems.

In previous studies it was noted that the mothers of individuals with DS tended to describe their children using terms such as ‘affectionate’, ‘sociable’, and ‘easy’ (in temperament).

It is reported that individuals with DS tend to have significantly higher adaptive skills (a measure of how well people function in their environment) than their low IQ scores might predict (the flaws in IQ tests are a whole other story), and exhibit fewer behavioural problems than individuals with other IDDs.

So, it would seem that the behavioural profile commonly exhibited by individuals with DS has a significant part to play in the Down’s Syndrome Advantage.

The picture is far from black and white, though, and more research is needed.

And there is no denying that raising a child with Down’s Syndrome does bring all kinds of challenges for the family.

And what about the wider family?

The studies I’ve talked about above mention only mothers.

Does the Down’s Syndrome Advantage bring any benefits to fathers and siblings?

In part three, I’ll be looking at one way in which this ‘advantage’ benefits the family unit as a whole, and may even give us ‘DS families’ an advantage not just in comparison to the families of children with other kinds of disability, but in comparison to ‘typical’ families as well.

Therapy

I am the very image of a late adopter.

I very rarely type straight onto the laptop, preferring instead to scrawl everything down long hand.

In a book! With a pen!

How very, “last season.”

I have a note book in which I write first drafts of blogs, and any ideas or startling insights that occur to me during the day.

I wrote this in it. It is pink,faux leather, with three little birds on it. When I have my midlife crisis – there’s one due any moment – this will be my tattoo.

I love this book, and the birdies – the more I write in it, the more I love it.

The book had a different initial purpose.

When Pearl’s difficulties first became evident I leant on my profession as a coping mechanism. I was a Registered Speech and Language Therapist.

I would observe from a detached distance Pearl’s progress, documenting everything. It would be a fascinating insight into how to fix all her problems.

It would probably be published and I would be held up as a ground breaking exponent of early intervention. Perhaps I’d get a Masters out of it.

Possibly even a Doctorate?

The first four pages, before the blog kicks in contain Speech Therapy plans, assessments, aims and observation. Underneath each session is a short note.

“Responds well to mirror” says one” Responds well to drawstring bag” another, and yet another “lip closure noted at rest mid-session”

I look back on this with a mixture of fascination and revulsion.

Where was my head? Did I really believe I could fix her?

Pearl in fact had other ideas. She was definitely under the impression I was The Mummy, not The Therapist ,and under her able instruction this short lived experiment

(4 pages of A5) was discontinued.

When Pearl was 4 I had another go, a therapist who was promoting a particular type of therapy came to England and I shelled out a great wodge of cash to attend the course to learn the basics and to have Pearl assessed.

The therapy was extremely intensive articulatory drill which, anecdotally worked phenomenally well.

With evangelical zeal I wrote programmes for school and drilled Pearl within an inch of her life.

She remained resolutely unimpressed. Looking back, she had a lot of other developmental issues that needed dealing with before this could begin to be effective.

Supportive seating was one, her concentration during sessions was entirely taken up with keeping her head and trunk still and upright.

Attention was another, she had very little in the way of an attention span. She couldn’t play easily as her physical difficulties got in the way.

In fact, what she needed was time, fun, Mummy cuddles and play.

Play is an important precursor to language development and I’m firmly of the belief that Play is children’s Work – so much happens during it.

I offer this experience to you for a variety of reasons, particularly if you are a newbie to the art of Special Needs Parenting.

You have one job.

Caring for, loving and parenting your child.

You do not have to fix them.

They are who they are. You will need plenty of energy to love and care for this small person.

It is enough.

It is more than enough.

It is the very thing.

Therapists will come and go with ideas that they feel very passionate about.

Take their advice they have expertise and experience.

BUT!

You decide what you are able to do and commit to at a given moment.

Expect small steps. If it is impinging on your family life, bin it.

Sometimes a Therapy or approach will come along that is intensive and works.

Grab it, make everyone in your circle use it, and be prepared to run with it while it shows progress.

If it begins ruining your mental health your, child’s relationship with you and progress slows, it’s probably time to stop.

Remember; you have not caused your child’s problems, and you do not have to fix them.

Your child’s developmental trajectory, and where it will end up is likely to be very different from your expectations and from their peers.

Change your expectations, find other parents in the same boat and do your best to enjoy the ride.

Fellow traveller, I write this as if it was easy.

Adjusting expectation and coming to terms with a new normal is never going to be simple.

It takes time.

Be kind to yourself, cut your child some slack.

Fine tune your eyes to seeing the progress they make.

Rejoice in the small steps, because they are astonishing achievements.

CP Diagnosis and Hope from a Racing Driver

We were still in hospital – Heidi had been born, full term and after a healthy pregnancy, but suffered a HIE (hypoxic ischemic encephalopathy) event shortly after birth.

Her brain had gone without oxygen and, as we later found out, there was significant damage.

The first medical term that was given to us was HIE.

I did what no-one in hospital should do, I googled it.

Having never heard the term before I didn’t have a clue what it meant.

We’d been given a booklet from Bliss that had some information on it, but I wanted to know exactly what the prognosis was.

Now with hindsight, I fully understand that no-one can tell you how the future is going to pan out, and each child is wonderfully different, but I felt like I needed something more than a leaflet; I needed to grasp hold of a thing, a concept, hope.

When Heidi was about 4 weeks old we were transferred from NICU to the Children’s Unit at our local hospital.

We were called to a meeting with the consultant to discuss Heidi.

This was a no-nonsense meeting and boy did some of the comments hit me hard.

Words like “severely disabled” and “advanced care plan” rang in my ears.

Something good did come out of it though – the phrase “likely to be diagnosed with cerebral palsy” was used.

Now don’t get me wrong, I’m sure there’s news that parents would be happier to hear, but for me this made sense.

I had heard of cerebral palsy, and because it was slightly familiar it didn’t seem as scary.

When we got out of that meeting, Steve (hubby) said “Lewis Hamilton’s brother has cerebral palsy, and he drives race cars”.

What? Really? Heidi might go on to be an F1 champion?

I knew it, I knew it was going to be alright!

Ok, so I may have got a little carried away there, but my google searches soon switched from “HIE” to “Nicholas Hamilton Racing Driver”.

In between watching the monitors that were hooked up to Heidi, I was watching YouTube clips of Nicholas, an inspirational guy who had beaten the odds to overcome his CP challenges.

It lifted me and gave me hope.

As Heidi’s got older, even though we are a “never say never” type of family, I’m pretty sure that she won’t be able to drive.

Our expectations are realistic and we’re hoping that one day unaided sitting may be achieved, but we take it a day at a time.

Our aim is for her to stay as healthy as possible, and to be surrounded by love.

Funnily enough though she does seem to enjoy watching car racing.

We often go as Steve volunteers on the Rescue Unit, mainly at Oulton Park and sometimes we’ve gone down to Silverstone.

She may not be behind the wheel but with the right pair of ear defenders she can certainly still be in on the action.

I know that for some people, getting a diagnosis, whether its cerebral palsy or something else, can be a really difficult time.

For us we found that it made life easier in terms of explaining how Heidi was, and for accessing the right support, but we don’t use it as a label for her.

She’s Heidi, and she isn’t defined by her cerebral palsy.

Our journey may have taken us on a different track to Nicholas but I often think of how he, unknowingly, gave me that glimmer of hope on a dark day.

If you ever get to read this Nicholas, thank you!

World Down’s Syndrome Day 2018 Part 1

It is a day when the global Down’s Syndrome community gets together to raise public awareness, and to advocate with one voice, for the rights of people who have Down’s Syndrome (DS).

We also celebrate the many good things that people with DS bring to the world, to the local community, and to their families.

I read something yesterday, when I was doing some internet research for this post, something that stated that it was ‘morally reprehensible’ that parents like myself should talk in positive terms about Down’s Syndrome, as ‘retardation’ was ‘unnatural’ and …

Well, I have no idea what else they went on to say, because I skipped on by without bothering to read any more of their venomous tripe.

I plan to continue being ‘morally reprehensible’ and will happily wave the Down’s syndrome banner in their face on March 21st, and every other day too.

It turns out that there is a reason why my blog seems like it’s all ‘rainbows and unicorns’ to other some people when, in fact, it is a true picture of my life as mum to a boy with DS.

It’s called the Down’s Syndrome Advantage.

I must point out that nothing I say below is intended to demean, or be at the expense of, any other group of people.

What is the Down’s Syndrome Advantage?

Well, it’s not a figment of the fond imaginations of parents, and it’s not a myth generated by the oft-repeated and arse-achingly trite platitude ‘but they’re all so happy, aren’t they?’

It’s a real-world phenomenon with empirical evidence to support it.

Some researchers have proposed that parenting a child with Down’s Syndrome is associated with certain ‘advantages’ in comparison to parenting children with other kinds of intellectual or developmental disabilities (IDD).

In past studies it has been observed that mothers of individuals with DS report higher levels of psychosocial well-being in comparison to mothers of individuals with other kinds of IDD.

There is extensive evidence that the mothers of young children with DS:

Experience lower levels of stress,
Are less pessimistic about their child’s future, and
Perceive their children to have less difficult temperaments

than mothers of young children with IDD due to other causes.

And it seems that the mothers of adolescents and young adults with DS continue to experience better psychological well-being the mothers of those with other IDDs. They report:

Less pessimism about their child’s future,
Fewer symptoms of depression,
More closeness in the relationship with their child, and
Were more likely to perceive that the feelings of closeness were reciprocated by their child.

than mothers of similarly-aged individuals with other IDDs.

And there is evidence that this trend continues among the mothers of adults with DS, who, researchers observed, report:

More optimism and acceptance of their child’s disability,
More appreciation for their child’s strengths,
Less conflicted family environments, and
Less stress and burden

than mothers of adults with other IDDs.

Of course, that’s not to suggest that everything is hunky-dory for all families of people with DS all of the time.

What the research shows is a general trend, or tendency.

Within that trend, within the DS community we are all individuals, and, as such we vary greatly in our circumstances, our experiences and our perceptions.

Nevertheless, the bulk of evidence suggests that, overall, the mothers of individuals with DS tend to have better, or more normative, patterns of psychological well-being than the mothers of individuals with other IDDs.

Why is this?

Are children with Down’s Syndrome really easier to raise than those with other developmental disabilities?

In part two, I’m going to look at some of the possible causes of the Down’s Syndrome Advantage.

Cerebral Palsy Awareness Month

Welcome to March.

Can you believe we are into the third month of 2018 already?

How we perceive time always amazed me.

The last four years for me has both simultaneously flown by, but also felt like my entire life thus far!

So, it’s cerebral palsy awareness month; yes, a whole month dedicated to raising awareness to what I feel is best described as a neurological movement disorder.

Those of you who have followed my posts over the years will note that I like to reflect on the day we received Amy’s diagnosis; however, I’d like to talk if I may about the now.

Because back then, in those early days…. I had no idea how today would look.

I often wonder how I would feel if you told me back then how things would be right now.

We have overcome and been met with so many unexpected challenges along the way, and I’d like to think that in the face of adversity we have always prevailed.

Amy turned 4 recently and this feels like sort of a huge deal.

Not only because each Birthday I reflect up on (and have a secret cry about) when we were told that she may not make it through the night.

It also feels like a huge deal because this is the year she starts school.

SCHOOL!

Where does that time go?!

Sometimes I look at photographs of her from a year, two years, or three years ago… and it feels like a different life.

Those pictures don’t convey the probable turbulent time we were having, but also just how many mini milestones she was achieving.

We were fortunate enough to overcome a terrible housing issue and now live in a beautiful little bungalow.

We don’t own it – we sold our house.

If you’d told me back then this is what was in store I would probably have broken down crying.

I would have sobbed my heart out.

But when it came down to it we knew it was the best thing to do and we accepted that from now on every decision we make is “what is best for Amy?”.

Back then I never knew how Amy’s cerebral palsy would manifest itself.

I remember being told that “no two people with cerebral palsy are the same – you simply cannot compare”.

I would spend hours at night trawling the internet, desperate for information about what was to come.

It’s such a cliché but the absolute hardest part of all this is the not knowing… the inevitable “wait and see” conversation.

You’ll want every MRI and test going to help you understand your child’s brain and how its developing… but you will learn that really, the best way to learn is from how the child presents.

Our main battle lately is movement.

Those muscles of hers – they never stop!

Amy has athetoid dyskinetic cerebral palsy.

Even if she wants to relax; her body does not allow it.

Even in her sleep she wriggles a lot, and the tiniest touch will startle her and set off a whole range of movements.

I sometimes lay in bed as still as I can, and I wonder how it must feel for all of your limbs act out in a way you didn’t desire.

It must be so frustrating trying to control those movements and spasms.

We are in the midst of trialling a new medication to help with her athetoid (involuntary) movements.

Would you believe the main side effect (which isn’t even a common one) is insomnia?

Not just a little bit of waking up here and there. but full on wide awake for the entire night.

It has been horrendous beyond belief!

The solution for this?

Of course… another medicine!

So far it works and I am finding that her movements during the day are in fact a lot more purposeful and controlled.

It’s a great feeling.

In the past, any talk of new medication, new intervention or new equipment would fill me with anxiety and grief; these days it’s a welcome change… something that may make life a little less challenging for all of us.

The downside is the pre-bed time tantrums.

I often joke with friends about how “I’m scared of a four-year-old”, and to an extent yes, it is funny.

But the reality so far (if you’re not super careful… or lack of sleep impairs your reflexes) is black eyes, nose bleeds and a fat lip.

I am not exaggerating when I say we struggle to dress her sometimes.

It’s a real problem.

Our next welcome intervention is the involvement of orthopaedics.

I intend to arrive at the appointment armed with video evidence of our current challenges (something in the past I may have overlooked… one thing in four years… I definitely got a bit smarter and better prepared!)

I wonder what I would have liked to have read back then about 4 years into this.

I’d want to know that I could do this and that I’d get through it, and that she would have the quality of life I was told she may not ever have.

It’s all true.

All of it.

You still cry, you don’t want to fight, but you will.

There will be days where you think you’re not good enough and you wonder how you’ll go on, but you’ll do it.

When you see that smile, that look on their face, your heart will melt and you’d do it all again a thousand times over.

You’ll meet people along the way that have been though similar things, you’ll make friends… you will find a support network and a place to have a moan.

It’s a world you never knew existed, but it is one that once you are part of it, you’ll be glad that you are.

I am privileged to be the mum of a little girl with cerebral palsy.

On the tough days I forget just how incredibly lucky I am.

The tube feeds, the meds, the splints, the equipment, the appointments, the physio, the paperwork… all of it… fully worth it.

I want everyone to know how much my life is now directed towards raising awareness, improving inclusivity and accessibility, and challenging perceptions.

I want to be the best advocate and mum I can be and even though I can be self-deprecating and nervous, I know that I am doing my best for that incredible little child.

Amy, her incredible daddy, and I are one hell of a team.

One thing I have not learned, by the way?

Is to find something green to wear!

I am useless at remembering to wear the right colour or thing for an awareness day!

Temporary Changing

Over the past few months you may have seen temporary solutions popping up to ‘solve’ the issue of disabled toilets not being suitable for all disabled people.

From portakabins to mobile toilets and even toiles in tents, there are numerous options on the market now which provide a temporary, and mobile solution.

But families like mine are becoming increasingly concerned about these temporary solutions.

It seems to us that they are being promoted as the answer to all our problems and a “quick fix” within the places we want to visit.

The reason we are concerned is because they are not suitable for everyone.

A mobile changing places toilet, such as a MobiLoo has its place and is ideal for temporary events, it can park up and provide a toilet solution where there wasn’t one previously.

But when it’s gone, so is the toilet.

And we shouldn’t be planning our days by following a mobile toilet from venue to venue.

A temporary structure such as a MigLoo also has its place in the market and is ideal for a school fete or even a one day festival (although in both of those places, a MobiLoo would provide more privacy and a safer hoisting system).

These type of structures might even have a place as a temporary solution within a building while they are building a permanent Changing Places toilet.

But any building which can house one of these temporarily could, and should, provide a permanent option which would be suitable for everyone.

A portakabin also has its place and is perfect for buildings which don’t have enough space indoors but if a large building is providing toilets for everyone else inside, then why should a disabled person have to go outside (potentially in the rain) to get to the toilet?

A changing places toilet is essential to so many people because of the things it provides which you won’t find in other disabled / accessible toilets.

A ceiling track hoist, which covers the majority of the room.

An adult sized, height adjustable, changing bed which provides somewhere clean to lay but also offers the carer different height options to allow for their safety and prevent issues to their backs.

Space for the wheelchair user and carers, or children if the parent has more than one child which is very common but often forgotten.

And a toilet and basin.

Facilities with these things have recently been referred to as the “gold standard”, but to me this is the basic standard.

Because, without those 5 things, a changing places toilet is not usable by everyone who needs it.

It is great to see more people getting on board with the changing places campaign, and working hard to make changes for more than ½ million people who need them.

However, as a campaigner I feel as though these temporary solutions are simply watering down the campaign.

They are giving businesses cheaper solutions which are not suitable for everyone.

The businesses providing those cheaper options will end up realising that they aren’t suitable for everyone, or aren’t being used, and will then have another excuse not to provide what we all really need.

And that is a real shame.

Spring Clean

It is the time of year where its full of fresh starts.

All the new baby animals, the spring cleaning and getting rid of the old things ready for the new things.

Spring isn’t just a time of year for physical changes; for me, it is also a time to emotionally and mentally cleanse.

I have held on to so many thoughts, so many feelings over this last year.

We have had so many triumphs with my daughter and son.

We have seen them do things we never thought were possible.

We have seen them grow physically and mentally in ways we had only ever dreamed of.

We have also experienced all time lows, where our world has just shattered around us, where all the progress you see just seems to disappear in the darkness.

Spring just seems to be a perfect time to spring clean my mind.

To take all the negative experiences and thoughts from the past year and to replace it with the new fresh emotions and experiences.

All the past worries, all the past tests and hospital visits, just swept away.

I want to look to spring with a fresh mind, a fresh view point.

Although last year was awful, I can not dwell on this.

I can’t be holding onto the negative feelings and experiences, as this year I will be facing even more challenges.

I can not hold new pressures alongside the past ones.

I am not saying that I will never look back at the previous year and feel sad, but I will not dwell on the past.

I am going to sit back, turn off all electronics and just shut my eyes and breathe.

I am going to empty my thoughts and just sit in nothing.

I will allow myself to cry, to laugh, to just express all the emotions I need to.

We hold so much in as parents of disability.

I am surprised I haven’t burst with all the emotions going through my head – this is why, this year, I am going to spring clean inside myself.

I want to be ready for the triumphs and the lows this coming year will bring.

Stopping To Admire The View On A Tough Journey

When I reached the top of the hill I stopped to catch my breath.

I also stopped so that I could turn myself around and look how far we had come.

The incline had been at such an angle my legs ached with a painful buzzing sensation.

My eyes scanned the landscape and I couldn’t help but feel disappointed that actually it didn’t look like I had ascended that high at all.

I took a reluctant photo of the view and put my phone back in my pocket – it didn’t seem worth taking a picture of the distance we had come, but I thought I’d take the photo anyway.

When I got home and reviewed my pictures it struck me just how metaphorical the walk was when thinking about our journey with Amy thus far.

My climb up that hill may not have looked so steep to someone viewing my picture.

The distance may not have looked that far.

But on our journey so far, even though it has been only four years, the path was far from flat and smooth.

The wind may feel like a constant slap to the face; so cold that it turns your cheeks and nose red and impairs your ability to breathe clearly.

You may cough and splutter and want to turn around and give up – but you can’t.

You came this far, surely the worst is over?

You can get so immersed in your determination to plod on that you may neglect to admire your surroundings.

The struggle is real but so is the beauty of the trees.

You may spend so much of your life floundering through appointments, phone calls, meetings and so on, that you don’t stop to take stock and be amazed at just how far your child has come and how they are blossoming from a toddler to a full on child!

Take each step of the journey in your stride; cry, scream, shout into a pillow – but don’t forget to laugh, smile, feel gratitude for this unique path you have been presented with.

Now I am finding my footing, navigating my way a long a tricky path.

The mud sliding beneath my feet as I feel deep regret for once again making the incorrect choice of footwear for this venture.

Using the chunky roots of trees to provide me traction to prevent me from falling to my knees I make my way a long.

I navigate myself around the puddles as best I can, inevitably immersing my shoes in a thick cake-ish brown.

I want to look up at the trees but for fear of losing my ties to the ground I make do with the occasional glance.

You’ll pull up hard to get your feet out of the mud so you can make your next step.

You may see the other walkers – they seem to have come well equipped with walking sticks to give them balance and help them as they make their ascent.

They may have been given a slightly easier path – maybe it was by chance, or maybe they are better planners.

They don’t seem as bothered by the wind and seem to be progressing with vigour.

In life you will always meet people on a similar or entirely different path.

It is easy to compare your journey to theirs.

Sometimes it can feel so unfair that your path had to seem the most treacherous when others have a path that seems entirely smooth and flat.

Others may have a path that is built on a cliff and surrounded by storm clouds – this doesn’t invalidate your journey, don’t let it undermine your struggles.

We all only truly know the path that we have travelled and the path we are following.

Just because it may not look like you came that far – chances are, if you stop and turn around and consider the terrain and the obstacles you overcame thus far – you will be incredibly proud of yourself.

I realise that comparing our lives to turbulent waters, stormy seas and hilly walks can appear slightly cheesy, but I always find great comfort in being able to make sense of everything by using metaphors.

I hope that this post resonates with many of you and that you enjoy the path you have been given.

I don’t want to border on, “Welcome to Holland“, territory, but I probably have!