I watch you in the morning, as all the children come in and just lay on you watching TV, each with their own spot.

Each getting the attention they need.

Our baby leaning on you as today she isn’t strong enough to sit independently, our son sitting by your feet so he is just touching you so that you know he is there and he knows your with him.

I watch as our other two are in their spots, so you can play with our eldest daughters hair and can chat away to our youngest son quietly as to not disturb the others.

I watch as you know where all the children are even when you’re in the bath.

You know what each one needs without even seeing their faces.

I see you as you just get to sit down after getting in from a shift at work and instantly having to get up again as one of the children needs you.

I watch as you as you effortless pick up toys and clothes while telling the children what to do next on their homework pieces.

I see you calmly replacing the children’s dinners as their favourite meal from last week is now one they can’t even tolerate looking at.

I see you as you hold our baby during painful examinations and tests.

I see you holding back tears as our baby screams as she doesn’t know what is going on.

I see you researching ways you can make our babies life easier, new therapists that could help, new research programmes we could go on.

I see you as you run when our daughter falls down in yet another paralysis episode.

I see you rush to our daughters side as her face turns blue and she can’t breathe as she has laughed a little too much.

I see you tired as our son has had too much on his mind and couldn’t shut down last night and so kept you up all night talking about rectangles (one of his obsessions).

I see you as you struggle to hold back tears or when you are jumping around the room in pure joy and excitement.

I see you!

You put your life and soul into this family. You know all the children’s needs and will make sure all of them are met.

You are an inspiration and I wish you knew how much you mean to me and our children.

My baby (well toddler, but she will always be my baby), has a rare condition, it is so rare all the tests are coming back inconclusive.

We are on various research programs and having a rare condition means you are never really sure what will happen, or what the prognosis will be.

Before having my baby, I had NO idea that there were conditions that were either; so rare you never really get a primary diagnosis, or that it can be months maybe even years before getting a diagnosis.

I just assumed you could take a blood test and that was it, the doctors could diagnose you.

I never realised that I would be putting my baby under general anaesthetic just to have tests done.

I never realised how isolating it is to have something rare, that you could say to people what it is or the symptoms and people look at you in confusion.

When you try to explain it their expression turns into a blank expression as if your words are going right over their head.

That while you are on the path to a diagnosis of this rare condition a lot of support groups, charities and health services aren’t really sure what to do with you, your baby is disabled but there isn’t a diagnosis so we don’t tick a box.

When we get a diagnosis, it may either be the fact that my baby is the only one in the world with the condition or that she is one baby in a handful with the same condition.

In which case which foundation do you turn to?

I never thought I would have a child with a disability let alone one with a rare condition.

You hear about these rare conditions on the TV but you never in a million years think that the rare condition would be in your house.

These programs I used to cry over as a child was going through the unknown, and here I am doing exactly that.

Having a rare condition is isolating, and yet gives you the strength to campaign and teach people about living with one.

It gives you strength to research and go further emotionally then you ever thought you would be able to.

My baby was one in a million any way but now I know she is more than just one in a million.

I found this statement strange, as to me parenting is unique to each child and I thought we were meant to give encouragement to other parents not bring them down as their baby’s achievements aren’t as brilliant as my child’s.

Yet I saw these parents at every group I went to, in the school playground and even in the check-out line at the supermarket.

When you mention that your baby has rolled over, their little princess had rolled at birth. When you mention that your child has said his first word, their little prince has learnt the whole dictionary.

As I entered into the world of parenting a child with disabilities, I was hopeful that this unspoken Mum competition had ended.

That 100% of us parents would be holding each other up and supporting each other.

I have found that 99.9% of parents are exactly that, I can ask for help or advice and I get non- judgemental answers.

I have had people help in all sorts of things including the best route to go up to the London hospitals, to help with how to get the most nutrients into my baby who is still 80% on purees.

I have had people state that their child doesn’t have the same thing as my baby but they will lend an emotional shoulder to cry on as being a carer and a parent is physically and mentally exhausting.

However, there is a very small minority who seems to make a competition out of having a child with disabilities.

Recently I was at a hospital appointment with my baby and a Mum came in the room, all us Mums did ‘the smile’, the smile you do when you are silently saying, “I feel you, I am with you and we are all in this together”.

What we got back however was this Mum stating how her child was more disabled than everyone in the room, that her child had to have a lot more care and attention than everyone else’s.

The comments she made, I just wasn’t expecting. I wasn’t expecting her to come out and tell me my child’s disability isn’t really a disability because it hasn’t been diagnosed.

This unfortunately isn’t the first time I have experienced this sort of competition of whose child is more disabled.

I just do not understand this mentality. Yes some children medically are more complicated and more complex than other children I am not denying this.

As parents however, no matter how small an impact the disability has on our child, it is still massive for us.

My daughter can do a lot of things that we were told she never would be able to, yet her future is uncertain and we are preparing for the worst, however I would never say to another parent, at least your disability isn’t life limiting.

We are all on a journey of disability, we are all on a journey which we never dreamed of and we are all on a journey which realistically many of our friends haven’t been on either.

So when we find other parents on a similar journey we should be supporting them, not make them feel bad because they are upset about their child’s disability which you deem is less important than your journey.

We should offer advice, we should help and encourage, not drag a parent down and make them feel awful.

That yes 90% of the time life is harder than it could have been but there are those little silver linings that make you smile from ear to ear.

1) Every milestone you celebrate: my older children I can just about remember their first word if I really think and scratch my head.

However with my baby I know that the first time she reached out for a toy she was 8 months old. That the first time she could be bathed without me in there she was 13 months.

That the first time she moved she was 4 weeks old and it was the tiniest movement in her fingers.

I don’t know the first time my children bathed in the big bath, I don’t remember the first time my children reached out for a toy, and I don’t remember the first time they cruised around the furniture.

Each inch stone is massive and so memorable and this is what you need to cling onto.

2) Science lessons: I got good exam results in science however since having my baby I have learned biology that I hadn’t even realised existed.

I have learnt more about DNA then I did in my whole entire coursework module of DNA. I have learnt that if your kidneys are doing this then it causes this.

I have learnt that the blood only holds so much information and that if you want to know about the brain you really need to use spinal fluid.

I have learnt that if you have an ankle that is turned in this causes twisting in the hips and other problems.

I have learnt that the body still has mysteries we haven’t discovered.

3) Sleep: for me I have a child who rarely sleeps and is awake 22 hours a day. However I also have a child who sleeps for 22 hours a day.

I have learnt that your body somehow can battle through on zero sleep. That the exhaustion is always there but somehow your mind can trick you into thinking you’re not tired.

It has also taught me that when my son who never sleeps is at school I have a baby who has a condition which makes her sleep excessively and so if the exhaustion is too much I can have a nap during the day.

I know not all parents can do this and realise how blessed I am to have this.

4) Support: I will admit sometimes people ask things about my baby that I find inappropriate however I am so happy that people are continually asking about how my baby is doing.

That they are constantly asking how we got on at hospital appointments. That they go out of their way to say that they have missed you and have been wondering how well she has progressed.

The support from random strangers is amazing, the support I get from family friends and family is amazing and although I always knew they were there, it is just special how people genuinely are interested in how your baby is doing.

5) Last but not least, I have a wonderful unique baby. I have a baby that is full of determination.

I have a baby who has taught me not to be down about things you can’t change. I have a baby who is beautiful.

I have a baby that fights to do things other babies take for granted and this just shows that she is such a fighter. I have a wonderful baby who is amazing and who is so special.

I thought I knew everything as she was my 4th baby and yet she has taught me so much.

Children with disabilities do bring so many challenges but I like to make a list at the end of the day about 5 brilliant things they have done in the day.

Even on a day where all I can see is negative situations it is something I make sure I do.

Every night I get reminded about how special my children are, every night I get reminded about how much I love my kids.

It made me think and realise how wonderful he is and how remarkable he is.

It made me remember achievements that people would see as little, if seen at all, but for me they were the biggest achievements ever.

Little things that I spent hours looking for either adapted equipment or just literally sitting and teaching him how to adapt to make his life manageable in the outside world.

I remember crying the first time he picked up his fork and ate a piece of meat off of it at the age of 5, teaching him every meal time that you put food on your fork and then into your mouth. Taking it in baby steps.

He was excited to come home and tell me how he had eaten using his folk at school, he spoke a lot about how people had stopped commenting on how he ate like a baby.

I was looking back at his emotional awareness. He still has no clue about it all, however he has taught himself how to react to certain experiences.

To start with he would look blankly when people hurt themselves, he then realised he had to react and so laughed when someone hurt themselves.

He has now progressed and does a sad face when someone is hurt. This is massive!

He still struggles a lot with situations that we haven’t spoken about, and there are many.

We were told that 2 boys in his class said that they liked him and were waiting for a response, our son didn’t know how to respond so hit them and then went into a ball.

When we got home we spoke about what to do the next time someone says this.

Nearly every day he is now asking how he should have responded to a certain situation as he recites in perfect detail an event that happened at school.

He wants to have friends however isn’t sure how to make friends due to his social understanding.

I love my boy so much, I wouldn’t change him for the world, however he is learning that he is different and is asking to help him adapt.

I never say he has to change, he doesn’t, and he is perfect. I say that I will help him to cope with the world that isn’t ready for his awesomeness.

My boy is awesome and is teaching me so much about how the world works.

I know that you probably think I don’t want to talk about your daily upsets; that your washing pile just won’t disappear, now your child talks you want a moments peace, that your child has a cold and is up all night and you just want to sleep.

The thing is it is one of the many things I want and sort of need.

My life is not normal, it has been turned upside down, inside out and shaken all about, I have ended up in a destination I never ever thought I would be in and I am lost.

I need the normality of talking about the childhood sniffles, that the kid at nursery cut your bundle of joys hair, that the boss at work won’t let you eat at your desk anymore.

It brings me back to normality for that moment in time.

It is bringing me back into my old life of no stress, of no worry about the next appointments and the next round of testing.

Talking about normal, somewhat ‘boring’ topics makes me for that 5 minutes forget that my child potentially has a life limiting condition, it makes me forget that my child’s life is not what I would wish on my worst enemy.

Yet those normal conversations are getting fewer and far between.

Most people generally ask about my baby’s appointments and what is happening now, which don’t get me wrong is lovely that people care enough to ask, but that is it, that is the extent of their conversation.

It is almost like I have a sign above me stating that I cannot handle a normal conversation without ending up in jealous tears as that’s what I wished my worries and concerns are.

I love my daughter and I can’t imagine her any other way.

I would love to take her place and I would never not want her around just so I had my ‘old’ life back, but I sure wish I had the old conversations.

Please do not forget about me, please don’t let me fade away and just be the mother of a disabled child.

I am still me, my child may not be the same as yours now but I am still here.

When you have an Autistic child routine is needed and I have started to feel like I am in the movie.

Each day I wake up, I watch the same TV show and watch my son eat the same breakfast. I have the same arguments about putting on coats, sunhats or even suitable shoes. I watch as he trundles off to school.

You would have thought when my son had left for school that would meant that I could do what I wanted. This is not the case.

When the school run is done there is so much work and most is just the same day in and day out.

The house must be perfect for when my son comes in. Everything must be in its place.

All washing and loud housework must be done while he is out of the house due to the loudness of the washing machine and tumble dryer.

All sheets must be washed and put back onto the beds before my son gets home. The fridge must be filled with the right food.

Along with many other things that you don’t even realise you are doing it, until someone asks “what are you doing?”

Even the weekends when schools are shut, are the same week in week out. You could almost live the day with your eyes closed and know exactly where your child is.

This has been our life for nearly 6 years now but that doesn’t make Ground Hog Day any easier.

It doesn’t make it any easier that you know how long to the minute it takes to strip down the bed, wash it and dry it.

It doesn’t make it any easier that you know when the children get home from school my son will need to go upstairs and completely shut the world out and watch tv.

Nothing can prepare you for living Ground Hog Day.

The only difference between my life and the film, is that the main character in the film wanted out and was finding a solution, whereas my life will continue in this cycle for years to come, only changing probably due to circumstances beyond his control.

I will live through this routine as long as I need to and as long as my son needs me to.

It’s OK to mourn the life I had envisaged for my daughter, my other children and myself.

It’s ok to mourn and cry out loud to say this isn’t how life is meant to be.

I should just be worried about what playschool has the best reports not which playgroup has the equipment to support my daughter in her disabilities.

I should be worrying about my daughter’s first cold, not worried about the fact her kidneys don’t work how they should be.

I shouldn’t worry about meeting children that are the same age and wondering if that day I will be strong enough emotionally not to cry as they are all walking around, and talking where as my baby isn’t.

It isn’t the fact I am jealous and don’t find joy in seeing this, but it reminds me how delayed my child is, how different my baby’s life is going to be.

How hard she must work to achieve things that should come naturally and with ease.

It’s ok to mourn for the stress-free childhood I had wanted for my other children, the sort of childhood where they can run and play in the woods chasing each other without a worry in the world except for how messy they can get.

We have started to tell them little bits about their sister’s condition as they have noticed she isn’t as developed as she should be.

They shouldn’t have to worry about this, they shouldn’t have to see their parents rush to hospital as their sister can’t move, they shouldn’t have to worry about making their sister laugh as when she does she struggles to breathe as her throat closes causing her to suffocate.

They shouldn’t have to worry about the fact their sister doesn’t understand them, that their sister just looks puzzled when they talk to her.

They should be getting frustrated that their sister is messing up their room, that their sister is drawing over their school books or trying to use their bikes even though she is too young and too small.

They shouldn’t even know that children can be disabled. Yet they live with it every day.

It’s OK to mourn that my life’s plans have stopped abruptly.  That we have had to move from our home to a new place to accommodate my daughter’s needs.

It’s ok to mourn the fact that my career came to an abrupt stop and that although I love my little part time job, it is not what I had envisaged for myself at this point in life, my qualifications sitting in a folder, for the foreseeable future not seeing the sunlight.

It’s ok to mourn the relationship I used to have with my husband, one where it wasn’t stressed, one where we laughed every day, one where we knew what the future held.

I love my daughter, I would go to the moon and back for her, but that doesn’t mean I can’t mourn for what I thought our life should be.

I always felt at New Years that it was amazing. It was like starting your life again, anything was possible.

I would write a bucket list and excitedly plan to tick the activities off. They were always realistic, but they were things I would never do in a million years!

– Go on holiday and snorkel

– Get a promotion at work

– Buy outfits not in the SALEs

Even when I had my first child, my beautiful daughter, although the resolutions slightly changed, they were still things that were exciting, things that I thought could change my life or at least my perception of life.

– Go abroad for a Mummy daughter holiday

– Get annual passes for all the local attractions

– Get lots of ‘mum’ friends to go to the coffee shop with

Then my wonderful son came a long and my resolutions started to slowly change.

– Go to the supermarket without a meltdown

– Go a different way to school then the usual route, without a meltdown

– Teach him one emotion and how to respond to this emotion appropriate

My resolutions were no longer resolutions to make my life more exciting, or to make my daughter’s life interesting and more cultured.

They were resolutions to help my son cope with everyday chores that need to be done.

They were resolutions to help him survive in a world that although is slowly accepting diversity isn’t perfect and still has pit falls

I was making resolutions that seem so simple to some and so hard to others.

I still vividly remember my first trip to the supermarket with my son. It was far too crowded and we bumped into his SENCo (Special Educational Needs Co-ordinator) from school.

This just made him stim. He was flapping his arms, making his squeal noise that shows his anxious, and started to bump his head on the trolley.

It was soul destroying for me as a mother as I was the one who put him in that situation. I was the one that took him to the supermarket, I was the one that put my boy into a situation that made him feel so uncomfortable.

I know that I will not always be able to cross off all of my New Years Resolutions. I know that there are some that I wish I could get but know that if they happen will be a miracle.

I would love an, “I love you Mum”, but I am more than happy with, “I like you Mum”.

The little stepping stones I can cross off my list means I can prepare my son for the outside world, where I won’t be able to be with him all the time, where the outside world can be harsh and cruel.

Where the outside world can change the plans with no warning and where people can openly be terrible.

I love my son, I love his world and I wish everyone could.

For now I have my New Years Resolutions, you never know maybe one year the world will have changed their opinion and be accepting and understanding, but until this happens I will put my sons stepping stones in development down as my wishes for the year.