Siblings getting used to things they shouldn’t have to

The bell rang for the end of the school day and like every other child my daughter changed to her outdoor shoes, put on her coat and headed out the door of the school. She stopped and looked around then waited.

There was no-one there to pick her up again.

She went back into school to wait at the office.

She waited. And waited.

Finally, her dad came stressed and in a hurry.

‘I got caught in traffic and couldn’t call sorry. Your brother is back in hospital again.’

Speedy dinner, quick change of clothes, long drive in the dark and rain, homework done on the floor of the ward with machines bleeping and buzzing around about then the long drive home with the other parent at the end of the night.

Mum held her before she went to sleep silently praying she’s ok despite the chaos.

‘Mum it’s ok. I’m getting used to it now.’

In our world emergencies happen too often.

If I got her excused from homework every time her brother was sick, her dad’s depression was bad or I had to rush to see to my elderly mum again then I’d never be away from the school.

It’s not ideal but it’s the harsh reality of life with a complex needs brother and a family where everyone except mum has additional needs.

Unsurprisingly she has her own needs too and these too often get pushed aside for yet another ‘emergency’.

Less than a week later and her brother is now home and life should be more stable.

Yet all it takes is a hair cut, a change of TV schedule, an unexpected visitor or something not working and things spiral quickly again.

Peace turns to violence, anger, upset and danger quickly. This is the reality of a brother with severe autism, epilepsy and learning disabilities.

Unpredictability is the only predictable thing.

Mum once again holds her as she drifts to sleep stroking her hair and promising ‘tomorrow will be better’ and once again the little voice murmurs back: ‘mum, it’s ok. I’m used to it now.’

But that’s just it. No-one should be ‘just used to it’; not a parent, or grand parent, or a sibling.

I can’t change the circumstances but I need her to know that she matters too, that this IS hard and that there is support.

Otherwise my child will grow up thinking it’s normal to do homework on a hospital floor, it’s normal to hear screaming every night and it’s normal to be going to bed upset.

The intensity of life like this shouldn’t be normal for anyone, let alone a child.

My fear is my daughter could become immune to things that she should never be.

She could potentially ‘get used’ to being bullied or beaten up by a future partner or living a life in crisis because her childhood has taught her that these things are things to ‘get used to’ and just accept.

Sometimes we have to make difficult decisions as special needs parents.

We can spend our lives prioritising the needs of our disabled children or even our own needs thinking siblings are developing resilience and independence when in fact they are internalising and ‘getting used to’ pain, suffering and instability.

Both my children need me but there are nurses, respite workers, teachers and carers who can and will support my son.

For the sake of my daughter I need to utilise them as much as I can.

Maybe then she will get used to me being there when that school bell goes again at 3pm and sitting together at the kitchen table to do her homework and reading to her before bed in peace and quiet.

It’s those things that other children her age are used to and those things she should be used to too.

Inclusion Champions – Transforming children’s and youth work

There are many ways that those involved in children’s and youth work can make a big difference for children and young people with additional needs or disabilities, and their families.

I often get asked what one change can make the most difference, can have the greatest impact, can enable lasting transformation.

The answer I always give is this… have someone that owns this, that champions it, that challenges the rest of the team to step up and make a difference.

It’s not just about inclusion; so often children’s and youth groups and activities feel that if a child or young person with additional needs or disability is able to access the group then the inclusion box can be ticked.

It is so much more than this, as to settle for inclusion could just mean settling for offering a child-minding service, and there is much, much more that the group can, and should do.

Having an ‘Inclusion Champion’ can help groups to develop three important steps for their work with all children and young people, including those with additional needs or disability:

Three important steps

• Inclusion: This is still important and needs to be a foundation stone for everything else. Looking to ensure that everything the group offers is accessible to all, inclusive of all, accommodating the needs of all.

An ‘Inclusion Champion’ can be vital here to ensure that the programme the group provides is assessed against the needs of everyone. What parts of the programme might be difficult for some to access? Are there certain activities that are inaccessible to some? What simple changes and adaptations can be made to change this so that everyone is welcome, everyone can take part, everyone’s needs are considered and acted upon.

• Belonging: Inclusion is just the first, important, step. If we stop there, we settle for so much less than is possible, so much less than we should. Within children’s and youth work we risk just settling for child-minding. But do those children and young people really feel that they belong to the group; that it is their group?

Are they missed, for all the right reasons, when they can’t come? Is what they bring to the group valued and cherished, bringing a flavour to the group that is distinctive and vibrant? An ‘Inclusion Champion’ can work with the other leaders, the children and young people themselves, as well as parents and carers, to create a place of belonging for all, where everyone is valued.

• Developing: Even belonging isn’t the end of the journey; while it’s great to reach a place where all children and young people feel fully valued within their group, there is even more that can be done.

Every child or young person, whether they have additional needs or not, can develop and grow within the group and should be helped to do so. An ‘Inclusion Champion’ can enable children’s and youth workers to consider how to help everyone to grow and develop.

Where an ‘Inclusion Champion’ is in place, the impact across the work of the group is transforming.

Time and time again I come across stories from groups that have been involved in some of the training I run, which highlights having an ‘Inclusion Champion’ or ‘Inclusion Leader’ as the most important step, and are now seeing amazing results from having someone in this role.

An ‘Inclusion Champion’s story’

Claire from Zeo Church in Hitchin sums up their experience here:

“One of the ‘Top Tips’ which is shared in the training is for every group to appoint a SENCO/Inclusion Leader. I was challenged by this fantastic suggestion and took on the voluntary role of Inclusion Leader at Zeo Church. This is such an exciting opportunity and so far, together with the Children’s Pastor, we have made significant changes and made a great start in helping our children’s groups to be more inclusive and accommodating for children and young people with additional needs.

In my role as Inclusion Leader I also led a seminar at a training event for children and young people on the subject of including children with additional needs in a church setting.”

A mum’s story

Beckie is mum to a child with additional needs who attends St. Paul’s Church in St. Albans; here she speaks about the difference having an ‘Inclusion Champion’ has made for her and her family:

“I wanted to write to say how important the SEN inclusion at St Paul’s has been for us as a family. I understand that the inclusion that there is now at St Paul’s stemmed from a course that members/staff from the church attended. I understand that this encouraged the creation of an ‘Inclusion Officer’ role at church and a whole host of other practical measures that support inclusion of SEN families.

Life with a child with SEN can be very isolating and there are few places in which, at times, it is possible to feel comfortable and welcomed

. Some of the things that were implemented at St Paul’s include Makaton signing in family services; a space for those with additional needs to be during the service; a one-to-one helper provided for those children that need it; Makaton training for the children’s leaders; visual time tables for the service timetable etc.

These steps have helped us as a family to feel welcomed and included in the church. The fact that the church has implemented these steps portrays a strong message that those with SEN are welcome, and that means they are welcomed with all the potential behavioural and emotional issues that that may bring. It also has helped our other daughter who does not have special needs. Her seeing the Makaton in the services has normalised the use of the signs for her and we think helps her not to feel like we are a different family.

If we had not felt so comfortable and welcomed it would have been very difficult for us, practically and emotionally, to continue attending.”

These stories lay down a challenge to children’s and youth groups across the country; if they want to be serious about inclusion, belonging and development for all children and young people then having an ‘Inclusion Champion’ in place is vital… Not waiting for the need to arise (the reality is that the need is already there anyway) but catching the vision, seeing the benefits this can bring, and going for it!

So, come on children’s and youth workers… let’s see a wave of ‘Inclusion Champions’ sweep across the children’s and youth groups of the country, and see all the children and young people of this land included, belonging, and developing!

Putting it together

Time spent with siblings is so precious; have I been overthinking it?

I’m one of those people who always feels the need to do something. I want to go somewhere, see something, make something.

Sometimes it’s a blessing, sometimes a curse.

Do my kids and I have lot of fun, outside-the-home experiences? We do! Parks, the lake, museums, friends’ houses, even camping – we do a lot.

My kids have taken on my “get out there and try it” attitude, and having a disabled family member hasn’t changed that much either.

Trips require more planning, so we can’t be nearly as spontaneous as before my son entered the picture, but we still get up and go plenty.

The problem is when the kids feel like being homebodies. I can’t stand it. I’m restless and I want to get somewhere, at least outside.

Chalk it up to being a mom of four whose primary work occurs within my house. I’m. Home. A. Lot.

Naturally, I crave social interaction, and something else to think about other than my ABCs and 123s.

Alas, mom’s needs be darned, the children outnumber me and so we are often home.

That is fine, except regularly I don’t have a clue what to do with them.

Does that sound odd? I have had four kids; I should know how to play with them by now. And with the younger two, I do.

Toddler play is simple and can be adapted for my motor impaired son. It’s my older girls I struggle with finding something they both can engage with, and since one-on-one time occurs with them less often I feel guilty about this.

For a neurotypical family this isn’t a big deal.

The kids can play by themselves, they can figure it out, there will be plenty of other times for us to play, etc. B

ut in a special needs family, the thing is that you don’t have those “plenty of other times” to play with the other siblings.

You have time allotted for Your special needs child, then the leftovers for the rest of them. Why is this?

The special needs child, by definition, requires more time and attention to accomplish the same tasks (or even play) as his neurotypical peers.

Mom’s Time spent with siblings may be rare and, therefore, precious.

It certainly is for me. I miss the days when it was me and my oldest girls alone, having tea parties and playing dress up.

I love my son to bits, no question, but there was also a disconnect that occurred from his sisters when he was born.

I had much less time with my then 4 and 2 year olds, and that hasn’t really been rectified in the following four years.

If anything, it’s become more challenging to find that time with them, let alone finding those special activities.

I realized recently: I’ve been overthinking it (I am prone to do this). Instead of going special and spectacular and outside-the-box, I went inside it.

A puzzle box, that is. I found a couple beautiful puzzles at a thrift store and asked them to join me during nap time one day to complete it.

But, I wondered, would they think it was too simple? Too boring? Too hard?

To my surprise and delight, they reacted the opposite. They loved it!

We made hot cocoa and chatted while we parsed out edges, and slowly worked our way toward completing small sections.

We celebrated when someone picked a piece out and immediately found the right place for it.

My girls freely shared about friends at school and other small things they had on their minds. We had two hours of uninterrupted mom-daughter time that turned out to be so precious.

We have continued our puzzle ritual for a couple months, and it’s been fun finding time to work on them together.

If we can’t complete one in a sitting, we just walk away and look forward to the next session.

There’s been an unintended consequence also: I have learned to slow down and not overthink my relationship with them.

I feel like I’m starting to put it together, and I couldn’t be happier.

Bumps in the Road

Since becoming the parent of a child with complex special needs, my entire world has been completely remade.

In all the years before this journey began, I thought I had it all figured out.

Life was a smooth, even road. I truly believed that I had an accurate understanding of what mattered most; a grasp of what was ultimately important.

How naïve I was.

When the road you’re on abruptly veers, you find yourself feeling jarred and shaken.

Without warning, the ride you’ve been on, all that you’re accustomed to, suddenly changes course. It’s terrifying.

Having a daughter with intricate disabilities, I have learned to redirect my route. I have encountered beautiful, breath taking sights along this unexpected detour.

My eyes are now open to things I would have otherwise missed; my perspective is less flawed.

As I strive to always focus on the great joys I have discovered, and maintain a positive outlook, sometimes, bumps in the road will cause me to stall. T

There have been ample times when the road has even felt treacherous, causing me to temporarily lose control of the wheel.

Sitting through painful cognitive assessments and ultimately hearing the label “profound” assigned to my daughter.

Witnessing her in pain or frustration, without the ability to verbally express it.

Watching children her own age, and years younger, running, jumping and playing; acknowledging the heavy unfairness of it all.

Panicking when there is a fever; scrambling to identify and treat the cause.

Being afraid to fall asleep at night; scared to take my eyes off her after she’s had an awful seizure.

Listening and praying for breath to return; hating and cursing the monster that is Epilepsy.

Feeling isolated and alone. Wondering why no one else understands.

Seeing her undergo multitudes of tests and needle sticks. Sitting helplessly as she underwent major surgery.

Pleading for vital services and equipment that she needs, time after time, and waiting months and months for them to come to fruition.

Thankfully, through all these road bumps, I always manage to regain control and composure. There is no other choice.

This road is one of adventure. It was not paved for the faint-of-heart.

We will forever experience these “bumps”, but our family will continue to hold steady as we travel ahead, together.

There’s an appreciation that grows within you when you drive this road.

You gain a truly grateful heart. The simple things all at once become the remarkable things.

Bumps in the road of life may slow us down, and even shake us up from time to time.

However, they will never take away from the incredible venture we’ll share.

Letting Go

We recently moved house. Not because we wanted to or even because we had found somewhere else to live.

We moved because my 5 year old has Duchenne Muscular Dystrophy. This means that although he is currently mobile, he will become fully wheelchair dependent over the next few years and loose upper body function after that.

Somewhat ironically, 2 months before he was born, we bought a cottage style house for our future family that couldn’t have been less able to be adapted for his needs .

When he was diagnosed at 2 and a half, we knew we couldn’t stay.

I am going to be honest and say that leaving our house was one of the things I have found most emotionally challenging since Sebastian’s diagnosis.

There are so many complicated reasons for this, the biggest of these being a grief for the loss of the life I had planned, the future I had thought about without even knowing.

Moving out of our home was a very physical manifestation of all everything that Duchenne has changed. It made me question the progress I have made towards acceptance on this journey. It reminded me that grief is not a linear process.

It reminded me of how very frustrating that fact is.

But we have now moved into rented accommodation while we look for our future family home.

I don’t feel settled and I am desperate to find the right place. But I do feel different. The complexity and depth of my reaction to moving has been met by an equal relief in letting go.

It may just have been a house but letting it go actually meant letting go of the life I thought I had. And is has surprised me to learn that there is freedom in that.

I think it caused me so much pain because I fought it so hard.

There are so many times since Sebastian’s diagnosis when all I have wanted to do is close my eyes and go back to life before it happened.

Somehow, moving out of the house we chose before Duchenne means that there is no way back, it means this really is our life now.

And in letting those dreams go, there is more room for the new ones that really matter. And for the joy they will bring.

Epilepsy Sucks

Watching your newborn baby make movements he can’t control and you can’t stop is soul destroying. Watching as his little body shook and his eyes flickered broke me.

I will never be the same again because watching my child seize has forever changed me.

I feel like I am in a heavy abusive relationship with epilepsy.

One that I really don’t want to be in. One that makes me so mad and angry.

It makes me cry and feel helpless. It has taken many of our special days and tarnished them with its ugly being.

Robbing my child of his childhood. Taking away skills that he’s learnt.

Epilepsy is the person I wish I’d never met. One that I wish hadn’t come to our party. It makes me sick with worry about what it will do next.

How it will appear and the effects it will have for the future. Its a dark being that just lurks in the corner waiting to arrive when it’s not been invited.

It has timing that is really bad. It lasts for minutes but it’s effects last forever.

It comes at any time of day and it turns up sometimes unannounced. Some days it sends a warning that it’s coming, like nasty letters coming through the door.

It’s kept us house and bed bound for so many days. It tells us we can’t go to things we have planned and it makes us fear those times when it does allow us to go out.

It is constantly there, poking over our shoulder, waiting to attack at any minute.

Every single day it pops up and spends some time with us. It’s very rare it leaves for a day at all. It hardly ever goes on holiday leaving us for a nice break.

It sometimes works part time and has calming periods but then it comes back fighting and ready to cause a stink.

It really does suck having epilepsy a part of our everyday life.

If I could take anything away from Ethan it would be that. I would allow him to have no times where he was scared, his body moving without his control, his memory being wiped, his head building up and essential exploding.

I will never give up hope that I may be able to make epilepsy leave. But I guess for now we’re keep throwing things at it and hope it leaves the party soon.

A work in progress

When my daughter was born, her doctors gave us the expectation that she’d have very little purposeful movement or abilities.

Since that time, she has defied all odds and has slowly improved her cognitive abilities and fine motor skills.

She never ceases to amaze me, but sometimes it still doesn’t feel like it’s enough for the world around us.

Milestones do not come easy for a child that struggles with delays, so when you finally manage to hit one, you want to shout it from the rooftops.

However, often times you are met with the dreaded “what’s next”.

Usually not so directly, but you always know what is being implied.

When she took her first steps in her gait trainer, I was almost immediately asked when she would start walking independently. My heart sunk.

We will always work toward that goal, but I know there is a strong possibility it may never happen. All I wanted was to savor that moment we had worked so hard to achieve before looking forward into the unknown of the future again.

She is also almost completely tube fed. The concept of a toddler not enjoying candy or sweets is a hard one for people to reconcile in their minds.

In all honesty, even if she could eat orally, she would have zero interest in foods.

She has been cleared by her doctors to try eating thicker purees, but due to her extreme oral aversion she has no desire to even try.

We’ve tried every therapy, and even bribes of chocolate to no avail. I’m frequently asked if we are any closer to oral eating. My answer is always “any time between now and never”.

In the beginning, I did a lot of mental gymnastics to remain optimistic.

I envisioned doing the work needed to rehabilitate her and having the story book outcome of a physically abled child, but that is not reality.

As time passes, I’m getting a better perspective of our future. It takes time to come to terms with unmet expectations and to grieve the loss of the life you anticipated, but I feel like we have grown together.

I’m definitely not the same person I was prior to having her in my life.

In a perfect world she would grow up completely independent, but the reality is that she will depend heavily on the village around her.

With every accomplishment she achieves, I want her to grow confident in herself; even if it is not the same achievements as her peers.

I don’t want the world to make her feel as if she is not enough, and her best will always be more than enough for me.

Inspirational Love

A lot of us are motivated to want to do more for the special needs community after having a child with special needs.

In my case not only was I motivated by my son but my daughter as well.

My daughter Jada adores her brother and she often talks about how she’s going to care for him if something was to ever happen to me.

Her love for children with special needs goes way beyond her brother.

I’m always told by her teachers how she’s always willing to help those who have special needs. As well as any child that’s new to her class.

Whenever someone is being mean or doesn’t want to be friends with another child, she always talks to me about it. And I can tell that it really bothers her.

One day while talking to her she expressed to me how she wishes she could be friends with everyone, so they won’t feel alone.

She doesn’t like it when people are mean to others because of the way they are born or how they look.

Then one day she asked me if I think Jaylen will ever have any friends other than our family? And that very same day she decided that she wanted to be pen pals with children that have special needs and those that are being bullied.

She started writing last year and we call it Jada Buddies.

I reached out to families of different groups that I’m in n Facebook to see if it they would be interested in their child receiving letters from Jada.

And the response was amazing it was so overwhelming we had to take a break from it.

She recently started back writing and this time she has some help. At her birthday party she had a pen pal station where she asked her friends to pick a friend and help her write while they enjoy some hot chocolate.

The kids enjoyed it and it made her happy too.

I think siblings of children with special needs are amazing.

They look at the world different from other and can appreciate even the small things.

Life Expectancy

You’re bound to have heard the expression: “Live everyday as if it were your last”.

I remember hearing this as a child and feeling very confused. If I knew I were to die that day wouldn’t I be panicking about the fact I am about to die? Why would I want to live life that way?

A few decades on and I kind of feel much the same about it.

Sadly, mortality is on my mind a lot at the moment. It’s something I try to push to the back of my mind constantly, but it somehow always resurfaces and plunges its roots into my consciousness.

You see; my child is in a bit of a grey area when it comes to life expectancy.

I’m not entirely sure where we fit in, and it isn’t for lack of trying to find out. No one holds a crystal ball, no one knows how long anyone is likely to live.

But I spend a lot of time wondering how my child’s cerebral palsy diagnosis is going to manifest itself in terms of how long we get to have with her.

There have already been several times where I thought we might lose her and I live in constant fear of what might happen. I feel so fiercely protective of her and love her so much, I can’t imagine the world without her.

My daughter is on the severe end when it comes to her cerebral palsy.

Call it what you like, GMFCS 5, HIE grade 3, whichever. She has epilepsy which isn’t entirely controlled, and her respiratory system really struggles with any kind of common virus.

Each time she has an illness I have taken it for granted that she will eventually recover and order will be restored.

But deep down I know that this may not be the case forever. Infections are harder for her to shake off, IV access is fast becoming an issue – without access how will she receive hydration when we can’t feed her, or to receive vital life saving medications?

Then I start to worry – are ports in our future, central lines… hospitalising interventions. Will it mean as time goes on we will be spending more and more time in hospital?

I’m not sure how many more times I can hear “it’s not good news”.

She is at risk of hip dislocation (already tight on one side with a minor leg length discrepancy) and scoliosis.

She has fluctuating muscle tone and low density bones, this can put her at risk of contractures, fractures, all kinds. Her dystonia affects her daily and her postural needs are on the increase.

She is life threatened. Some have said she won’t live past her 20s. Some say she will have a normal life expectancy. I have had many different prognoses.

So. Live everyday like it’s your last. It poses a quandry.

Do I make a bucket list and frantically try to achieve those things? Do we focus solely on making precious memories and enjoying every moment?

Or do we relax, keep our composure, and face each day with deep breaths and gratitude without avidly forcing anything.

Do we limit medical interventions and trialling different meds or do we desperately seek out as much as possible to make her life more comfortable, or even prolonged? Do we aggressively pursue daily physio or do we do the bare minimum in favour of having as normal a life as possible?

I am so scared of looking back in the future and wishing I had done more. Or done less.

I already look back 5 years and wish I had enjoyed her smallness. Enjoyed how easy she was to cradle in my arms and rest on my lap.

I was lost in the stress of it all. I was overwhelmed. I wonder if I did it all again knowing what I know now, what would I have done differently?

I try not to agonise over regrets, I try to get by one day at a time. I don’t want to take anything at all for granted.

I want to appreciate every moment, even the really hard moments. I want to look back and know that I did my best and that no matter what decisions we make for Amy as parents, that she knows it was all in her best interest.

All we ever want for our children is to be pain free, happy, to know how loved they are, and to enjoy their childhood.

It can be hard to provide an amazing childhood when you spend so much of it in an over medicalised setting, where almost every part of your life involves equipment.

I have to try and look past that, acknowledge her pain, do my best to lessen it, but accept that I am not magical – I have no cures, I’m just another special needs parent trying to be just a parent.

I hope she grows up knowing how much she matters, that she is appreciated, adored and admired.

I hope she knows that she is valid. I hope she knows that whilst she may not communicate in the usual way, that her opinion and voice still matters as much as everyone else’s.

I hope when we aren’t around that she still feels confidence in herself and is still happy, and that those around her will support her as much as we do to make sure she is getting the best out of life.

I wonder – am I making adequate use of my limited energy resources?

Do I continue to advocate, raise awareness, educate and kick up a fuss. Or do I need to become more peaceful and accept that maybe just one person can’t make that big of a difference and try not to get worked up over the ignorance of others with regards to disability.

I also see how much families like ours rely on charities – I so much want to help them, raise loads of money, and help others.

But equally I need to accept that we qualify for these charities for a reason and actually I might need to sit back and accept the help so that I can focus my energy on the 24 hour care that Amy needs and deserves.

I am learning everyday, how best to find the balance.

The mum guilt will be there no matter what I do – if I let her watch videos for ages, I’ll feel lazy. If I deprive her of the videos I’ll feel mean. That’s just one example. Our days are filled with complicated decisions as varied as YouTube time, to whether or not brain surgery will be beneficial.

I am slowly learning to be kinder to myself, to know that I am trying my hardest, even when I feel like a complete failure.

We receive help from a local respite place, but have recently applied to the local hospice. It is something I have deferred for a long time thinking maybe we weren’t severe enough, or that we can get by without that support.

I’m not sure yet where we stand with it, but it will be an interesting and emotive journey for us either way.

I look forward to hopefully being able to spend time as a family in an accepting, happy, accessible environment where we can be enabled to make more memories together.

Thinking about these things often sends me into a guilt spiral for ever complaining about how hard things could be.

There could one day be a day I yearn to be woken up several times by an alarming feeding pump. There could be days I wish I could hear her tantrum cry.

It’s all relative though, I have to tell myself, being stressed at these things is a normal response, it doesn’t mean I love her any less or that I don’t care.

I know that however long we have be it 10 years or 50, who knows, she will have taught me the meaning of life and shown me more than I ever could have expected to learn.

Our children with additional needs open our eyes to a world we may not have known was there.

They make us more resilient, more patient, more grateful. I have never felt so many raw emotions, sometimes all at once, as I have felt whilst waiting to know she’s okay after a surgery.

Or the relief I have felt when she comes out of a seizure and makes eye contact again.

I have never burst with so much happiness and love as when she smiles at us or laughs at something.

I know that the subject matter of this post may not be the most positive or uplifting, however, I do feel it’s a dialogue that is important to open up.

Infant loss, end of life care, hospices, being life limited, having a chronic complex diagnosis.. whatever it is… is something that can take a huge emotional toll in a family.

In some ways the subject is rendered taboo. We refrain from mentioning it to many of our close friends and family as we know it could bring people down or make them feel uncomfortable.

But sadly it is uncomfortable, it isn’t always nice, but the less we talk about things the more isolated we can become.

I urge anyone going through similar to us to visit a GP or seek counselling if you are struggling to talk about the challenges you’re facing.

We have to look after ourselves in order to look after our children and I think that starts with good mental health and good communication.

I panic most nights when I go into her room to do her last feed change and meds that she is too still. I linger close to her feeling for a heart beat.

As the heart beats and reassures me, I am reminded of how incredibly precious this small human is.

I breathe in her warmth and smile down at her angelic resting face. I feel my heart beat faster in gratitude for her existence.

The beat is a reminder of the time she was born with no heartbeat, requiring resuscitation, ventilation, and thus sustaining a severe brain injury.

Both fierce love and despairing grief consume me. I whisper good night to her, close the doors to her bed, and exhale deeply and think how forever indebted I am to those doctors who saved my little girls life… and may do again one day.