Our family life is vastly different to that of a typical household. Unique in our setup, our roles have naturally evolved over time. As has the amount of equipment needed to support our warrior princess.

Equipment becomes part and parcel of life with a child who requires assistance to sit, stand, walk, talk etc. It’s quite an emotive process as a parent to go through.

As often is the case, you may be reeling from a new diagnosis or are awaiting results. Your emotions are high anyway, to then see a large bulky metal piece of equipment in your home, tips the balance. Seeing an object, you had never envisaged being part of your lives, there in your living room. That can be hard.

It’s as though a piece of engineering has somehow reinforced the reality of your lives. It makes everything so much more real.

Please don’t get me wrong, we have a great love and appreciation for all the amazing innovative creations that allow our daughter to live a comfortable and supported life.

Talking honestly, from our experiences there are an awful lot of different pieces of equipment. They take up a significant amount of space. So much so, that we brought an additional shed to store some of the equipment and medical supplies as there was no more room in the house.

For a child like ours who requires full postural support, we have nine pieces of equipment at home. We are on the cusp of needing to have ceiling hoists installed to assist with transfers in and out of equipment. Kitchen cupboards have been utilised as tube feeding supplies and medicine supplies storage.

Sometimes it feels as though you are surrounded by equipment and other medical paraphernalia.

And the truth is, you are. It’s part of your life, a huge part. Most days I’m oblivious to it all, it’s only on my more tender days that it all seems more evident.

We are so lucky to live in a country where this equipment is available and our little girl is able to flourish with its support. Violet loves to stand tall in her standing frame and to walk using her walker. Sitting and eating are possible thanks to a seating system which absorbs her dystonic extensions.

So, although it is bulky and cumbersome, we love all of our equipment because of what it makes possible for our daughter.

Communication is far greater than the spoken word. For many parents in our community just the slightest change in facial expression can signify a choice, an emotion, a like or dislike.

Being classed as non-verbal doesn’t mean that a person cannot make verbalisations or sounds and sometimes the odd word or two. It’s quite a generic term covering a wide variety of possibilities.

When your child cannot tell you directly what it is that they want to express. You get creative. You look for signs, and indicators which can slim down the options. For us, it’s Violets eye gaze. She utilises this amazingly.

Violet at five years old is classed as non-verbal.

Violet can say a few words, not often and very sporadically. Violet does however have a lot to say, she uses her voice beautifully and sounds like she is singing. Violet uses her squeals, chatter and sighs to emphasis choices and emotions.

Over the last couple of years, we have experienced regressions with speech and communication as a whole. These have been absolutely heart-breaking, to reach hard won milestones and for them to be cruelly snatched away. Sadly, for us this is an ongoing battle due to a rare epilepsy syndrome.

However, Violet continues to surprise and amaze us. A great many people assume that when an individual cannot speak, that they do not understand. This is of course absolute rubbish. Speech and cognitive ability are completely separate entities.

Unlocking an effective communication method is the key to everything.

To mutual understanding from which you can continue to build a vocabulary together. It won’t be conventional and sometimes will be hard to explain to others but if it works, it works!

There is a huge desire as parents to recognise what it is, our child is requesting or telling us. It physically hurts to see your child in pain when you have no idea what is wrong because they cannot tell you.

To see the frustration in their eyes as they try over and over again with the limited gestures, they have available in their arsenal, for you not to grasp their meaning.

Intuition plays a massive part in the successes.

Often Violet has been incredibly clever in her approach and attempts to tell us what it is she wants to say. Pointing her gaze to certain objects, images or foods. It is often hit and miss until you have a lightbulb moment and it just clicks.

Whatever means used, communication opens a world of opportunity and independence. We use a range of methods, some work better than others. Everyone is different, each of our needs are unique, there is no approach that suits all.

Progress is often slow, frustrating for everyone involved and can be very emotive. But it is worth it all. To see the smiles, the proud face, the joy of being understood.

I remember clearly the first time the weight of the responsibility of being a parent, hit me full force. It was on our way to the first hospital appointment seeking answers.

It was the most overwhelming and frightening feeling. What an immensely important duty to fulfil.

I instantly doubted myself and my ability. However, those apprehensive feelings disappeared the moment I was face to face with a medical professional.

I was my child’s voice, I knew her, knew her better than anyone. I knew, something wasn’t right but being a first-time parent to two babies. I was out of my depth. I was naive and took their first explanation as gospel.

It wasn’t the answer.

Though initially knocked back, my confidence in preserving grew. I would not back down if I knew what they were proposing was wrong. We got answers, so many answers along the way. But not all told our warriors story. We pushed further and still do.

When you then start to add in the hoops you need to jump through to get support in the form of therapies and equipment. That weight on your shoulders grows heavier still.

The constant liaising with a large medical team, appointments and prescriptions. Not to mention the complaints and chasing up of reports and assessments. The weight is ever increasing and at times it feels as though it may crush your very soul.

It’s in those moments, the ones where it all becomes too much. Where you have to allow yourself a wobble. Let the tears flow, punch a pillow, eat a whole cake, listen to angry and then sad music. Release that pent-up emotion. Whatever makes you feel more you, not the parent bearing all the pressure.

A little self-care goes a long way.

Sometimes a hot shower and cry will do. Other times days have come and gone before I can regain the mental strength needed.

Only then are you ready to put that heavy, heavy cloak back on. To start again with a slightly clearer head and sometimes a new focus or perspective.

To all my fellow cloak wearers, I know that weight, I know that fear and that relentlessness. You are not alone.

My reply is always the same, yes, I am a full time carer to my twins, one of which is medically complex.

I accept the frowns and sheepish glances that follow.

I am mostly asked this by medical professionals, my interpretation is that this is just the automatic chit chat used to seem interested while the computer loads.

No real thought process has gone into the question and therefore they always seem caught out by my nonstandard reply.

I regard myself as many things, a wife, a mother, a PA, a disability advocate, a nurse, my daughters voice, a red tape warrior, a fundraiser, a blogger, a caffeine addict and most importantly I am me.

Losing your identity as a parent is part of the massive learning curve when you have children.

For me it has been a bit harsher. I returned to work after 10 months of maternity leave.

I gained back my independence, had adult conversations and gained a new focus.

But due to Violets health, I had to reduce my hours twice and eventually left my role after a short 9 months back in the workplace.

It wasn’t a choice, it was a necessity.

Often you will make decisions based solely on the best interests of those you love, you wouldn’t ever change those decisions but they still have a incredible impact on your life.

I feel a great purpose and reward from sharing our journey and experiences with others.

I am finding myself again along the way and I like the new version of me.

I have become stronger, more resilient, incredibly assertive and direct.

Qualities that are essential when battling never ending quests for support, funding or diagnoses. That’s your “work” now.

Parenting a child who can be in and out of hospital at a moment’s notice and who has an endless stream of appointments, doesn’t mix well with employment.

In fact, it makes it pretty much impossible.

The future we hope will bring more stability with Violets conditions and allow for a calmer and dare I say it “normal” family life allowing for more advanced planning.

And who knows maybe even a new career?

As a new parent to twin babies I felt overwhelmed, lacking confidence and second guessed every decision I made.

But despite all of that, I felt a mother’s intuition, I knew that something was wrong with one of my babies.

As time went on the intuition alarm that rings in your mind, fills your tummy with dread and body with unease grew.

Medical professionals put it down to a new mother finding her feet and wrongly diagnosed Dystonia and Seizures as silent reflux.

Yet I persisted.

I spoke to anyone who would listen and kept asking questions of those that should have the answers.

Finally after all reflux medications had made no difference and I approached my GP to discuss concerns about developmental delays, they started to take an interest.

It was years still until we made real headway in terms of diagnosis but along the way my mothers intuition has never failed me.

Spending so much time with my child gave me an impeccable knowledge of what was “normal”.

Anything outside of that was noticed immediately.

Sometimes this has meant that I have been on heightened alert for an impending seizure or illness.

Other times, that she is in pain but unable to tell me verbally.

Medical professionals now include me in decisions about care plans because I’m my child’s expert.

Always trust your instincts, as a parent you know your child better than anyone else on this planet.

Even more so when your child has complex medical needs, fight hard and never give up.

I tentatively made an Instagram account in May 2014.

We had just suffered a huge loss, our first IVF miracle baby, miscarried early on.

I was lost.

I was in desperate need to connect with people who understood loss and also infertility and the gruelling IVF process.

I was amazed at the online community I found.

The support and love I received and the friendships I made.

I shared our second round of IVF via my account, the ups and downs and ultimately my twin pregnancy.

I have transitioned over the years between different communities, infertility and IVF, pregnancy, motherhood, twins and multiples and landing eventually in our ultimate destination the SEN community.

I have friends and contacts from all communities I have been a part of.

I continue to offer support and advice where I can to new visitors to each journey.

Finding not one person, but a community of people that are going through similar if not identical journeys are your own is incredible.

The solidarity and understanding is second to none.

I have made firm lifelong friendships with the most wonderful people.

Reaching out can be scary but being alone in your journey is far scarier.

Amazing things an happen when you find your tribe.