(Cognitive) Age is just a number

Here we have just 1 page of Aubrees 12 page physical and cognitive assessment. The coloured blocks are things she has achieved, for a child to be recognised as functioning at a certain age, every block within the age range has to be coloured. Aubree is 4 and functions at an 8 month level, as you can see she’s no where near where neuro typical 4 year olds are. 

And that’s okay! 

It might look terribly sad, poor little child can’t do anything for herself, but it isn’t! None of the tests, assessments, rating scales or progress reports will ever be able to measure just how awesome a child is or how much joy, happiness and love they give. Oh sure Doctors will readily tell you everything your child has failed to learn, all the skills they are doomed to lose and everything they will never amount to. 

What they don’t tell you is how tenacious these kids are. How strong. How exuberant. How wild. They won’t tell you how one small human who can’t speak will tell you they love you in a million different ways, nonverbal just means you have to listen with more than your ears. They’ll never tell you how much this child will humble you, how much love you will have for them. 

It’s not all sunshine and flowers, and our dark days are pretty frigging dark. But its definitely not all doom and gloom either, and I figure if she can get through each day, I can to. 

(Cognitive) Age is just a number

The Battle for Dinner!

Calories, something people tend to avoid. A calorie is a unit of energy derived from food, it measures nutritional energy. You need a certain amount of calories per day for your body to function properly. Trying to get substantial calories into a child who is unable to eat properly is a battle and a constant worry. Luckily for us, Aubree is still able to eat orally, so I will do everything I can to make sure she enjoys food for as long as she is able. 

Fighting with gastro-oesophageal reflux disease, aspiration and a weak swallow we have to be very careful and very precise in what we give her and what consistency. Food from jars or pre-puréed foods are just so lacking in proper flavour and those all important calories, so today I’ve made Cod, potatoes, parsley, broccoli, cauliflower, peas. Chicken, mushrooms, sweet potato, broccoli, thick Cornish clotted cream. Beef, spring onions, butternut squash, peas, potatoes. Lamb, mint sauce, sweet potatoes, cauliflower.. You get the jist (are you hungry yet?) All thickened and puréed into oblivion. It’s hard to keep her interested in food, after a while she gets bored of certain meals so we always have to add something new. I feel so proud when she happily scoffs a bowl full of purée. Hopefully she’ll enjoy this weeks meals!

The Battle for Dinner!

Kudos, to you!

​To the special needs parent hiding in your bathroom, needing peace for just one minute.

To the special needs parent who is so tired you feel like you can’t function anymore and would do anything to lay down and get the rest you need.

To the special needs parent that is trying desperately to put those old jeans on because all you really wants is to look in the mirror and feel good about yourself.

To the special needs parent that doesn’t want to leave the house because life is just too much to handle right now.

To the special needs parent that feels alone, whether in a room by yourself or standing in a crowd.

You are enough.

You are important.

You are worthy.

In the end it will all be worth it. But for now it’s hard. And it’s hard for so many of us in many different ways. We don’t always talk about it, but it’s hard and you aren’t alone.

You are enough.

You are doing your best.

Those little eyes that look up at you, they think you are perfect. They think you are more than enough.

Those little hands that reach out to try to hold you, they think you are the strongest. They think you can conquer the world.

That little mouth eating the food you gave them, they think that you are the best because their belly is full.

You. Are. Amazing.

Kudos, to you!

What do you see?

I see you looking at my little girl. 

I see you looking at her, and then looking at me as I’m looking at you looking at her. 

Then you quickly look away, but steal another look at her. 

And at me. 

What do you see when you look at her?

Do you see a disabled child? 

A child who crawls her wobbly way along the floor of the soft-play trying with all her might to climb a foot-high step?  

A little girl who can’t feed herself, and manages to make a mess of every meal?  

A child that’s being pushed around in a pushchair/wheelchair hybrid?

You’re thinking, I wonder why her mum doesn’t help her over that step. 

I wish she would get out of my kids way! 

How can she let her make such a mess eating?

Why is she eating yoghurt and not a proper meal? 

Why is she being pushed around in that thing, I wonder why she isn’t walking?  

Poor girl. Poor family.

Look a bit closer.

What do you really see?  

I’ll tell you what I see.  

A child whose neural pathways are carrying scrambled messages from her damaged brain to her body.  

A child who has bravely tolerated three years of physiotherapy , occupational therapy, speech therapy and feeding therapy.

A child who still manage to eat orally, against the odds, even though the muscles in her mouth don’t work properly. 

A child who has learnt to sit and crawl independently, despite falling over (ALOT) 

A child that sits patiently in her wheelchair even though she wants to be off, on the floor, exploring the world, and doesn’t understand why it’s not always appropriate. 

Consider this: while your child has been running around at playschool making potato prints, mine has been making best friends with six different therapists.  

While you have been back at work and pondering over baby number two, I have been juggling with therapy programmes and trying to squeeze some normality in wherever I can. 

And friends, imagine if some of your closest friends became increasingly distant because they don’t know how to cope with, or react to, your child. 

I don’t mind you looking.

I don’t mind you staring.  

I don’t mind you nudging your mate and talking. 

I don’t even mind what you are thinking.  

I did mind, for a long time, and it did me no good.  

I have now reached a place where I can happily look at you, looking at my daughter, and look you in the eye, and smile. 

Because she’s mine.  

She’s all mine, I get to take her home and watch her grow, develop and flourish.  

I’m sorry for you, because you’ll never get that divine feeling, that opportunity to watch something amazing happen.

Let’s put it into perspective.  

You probably don’t remember the first time your child independently climbed up the steps and slid down the slide.  

Box ticked! Move on to the next milestone.

Well, I can certainly remember the joyous first time we could safely release my daughter from the top of the slide, to slide down on her own, into her daddys arms.  

While you were applauding your child for counting to ten in French, football practice or dance lessons. We’re happy just to have a seizure-free day.

I feel bad for you.  

It’s hard not to look, it’s hard not to judge, and it’s hard not to wonder.  

But it is easy to show empathy and compassion.  

If you are curious – talk to me!

If you are offended – don’t look!

You make me feel empowered.  

Empowered by your awkwardness, your embarrassment, your irritation.  

I simply feel proud.

Proud to know the real story and the real girl, and be a part of her really amazing journey.  

I am also aware that for every insensitive and unkind person, there are dozens who are genuinely interested, impressed, endeared and enamoured by my daughter.  

Those that can see through the equipment, the splints, the drooling, inappropriate behaviour and delayed speech, and see the marvellous little lady underneath.  

On the scarce days that I strike up conversations with these people, it really makes my day.  

I take comfort in the fact that we have made a tiny yet significant impact on their life.

I wish more people could be more accepting of the multi-dimensional world around them.  

These days it seems that it is more socially acceptable to be cold, quiet and vapid than to be sensitive, open and amicable.

So, next time you steal a look at her, then back at me, and then sheepishly look away, perhaps go home and look in the mirror.  

What do you see?

A Heart Full of Love.

You miss the things I haven’t done,
the goals not scored, or races won.
The steps my feet have never walked,
the words my lips have never talked.
In my wide eyes you know my fear.
You take my hand and hold me near.
In children, all around you see, the child that I may never be.
Not so able, tough or agile, often tired and much more fragile.
You see the tears I’ve often cried, and cried them with me, side by side.
Your heart is heavy for my trials, but you wear it well,
with weathered smiles.
I know that you know, I am enough.
But I know the bad days can be tough.
You thank the world for giving me to you,
but you’re sad for all I cannot do,
and not because you feel let down my me,
but you can’t help wonder how I’d be.
If I could do what others do,
like ride a bike or run to you.
You think of all the things I’ll miss
first dance, first love,
first date, first kiss.
Yet here I am, as I should be,
not missing out on being me.
Do not fret or worry so
and make your spirit tired with woe.
And when those nights are feeling longer,
lean on me until you’re stronger.
Hold my little hand in yours,
peacefully we’ll pass the hours.
For all we have is one another,
special child and care worn mother.
Nothing matters more you see,
than seeing all the life in me.
I don’t need to be able to,
do the things that others do.
See the words I do not say,
in the smiles I give you everyday.
When I’m tired let me rest,
with my little head against your chest
and for that moment in that peace,
let your loving worries cease.
Look at what I can achieve,
and celebrate me, do not grieve.
Please do not be sad because,
I’m not the child I never was.
Different isn’t less you know,
and you’re the one who told me so.
And somedays will be hard to take.
And you’ll feel as though your heart might break.
But we’ll bounce back,
we always do.
Because you’ve got me and I’ve got you ❤️

A Heart Full of Love.

A Crocodile Full Of Hope.

 

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Aubrees never shown emotional attachment to a toy before, she shows preference when playing she’ll choose what she wants but she’s never got the emotional side of wanting a toy to cuddle, if she had something that didn’t make a noise or light up she wasn’t interested!
Until this little crocodile came on the scene. We went to a Wildlife Park a little while ago and we always buy a little something from the gift shop whenever we go somewhere like that, and we always try to let her choose. Well everything there was too little and fiddly or fragile or was a stuffed animal that did nothing, so we thought we’ll just grab something and that’ll be our momento for that trip. I was looking at the Ty toys and picked up an owl and a crocodile, both of which we’d seen that day, and offered both to Aubree so she could choose. Now normally at this point she’ll show mild interest and then swiftly lose it preferring to nose at what other people are doing. She deliberately reached for the Croc and had a good feel of the material (with lesser seen fine motor skills woohoo!) and would not let him go, so of course we bought him.

Since then he’s been everywhere with us, to town, to the vets with our cat, supermarket shopping, Physio, hospital, he was even there when she had her surgery and MRI in April. She’s grown so attached to him words can’t even explain how happy that makes me, I’ve never seen her cuddle anything like this, and it might sound ridiculous but to make a connection like that takes some level of cognition and it’s just so wonderful to see. His name is Pippin and he’s here to stay 😊

A Crocodile Full Of Hope.

D (iagnosis) – Day.

 

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For the best part of 2 years we were lead to believe Aubree had Cerebral Palsy, for the best part of 2 years we grieved and grew and learnt everything we possibly could about CP. This picture was taken 1st April 2016 after my 3 year old went through her first surgery and second MRI on her brain, April fools huh? Several weeks later her neurologist offered us an appointment at the drop of a hat saying he needed to see us ASAP. So of course the alarm bells start to ring, what could be so different with these results that he needs to see us straight away?  We know her brain is damaged, what more could they possibly find?

As it happens it’s not what they found, rather what she lacked. He explained that you have 2 types of matter in your brain, Grey and White. The Grey is your actual brain cells and the White is the bits that connect all of your cells together, think of them as wires. Wires need insulation to conduct a current properly, the ‘insulation’ in your brain is called Myelin. Aubree has absolutely no White matter in her brain, she has no insulation, therefore her wires can’t conduct sufficient signals, hence her motor disorder.

This condition is called Pelizaeus (pel-ee-zay-us) Merzbacher (merz-back-er) Disease. It is an astonishingly rare progressive disorder of the central nervous system affecting co-ordination, motor abilities, and intellectual function. It is named after 2 German physicians who noted the presentation of the disease. There are less than 1000 cases worldwide. As it’s progressive our neurologist explained that she will learn limited skills until she reached 7/8 years old, then she will rapidly lose them. Alongside this she also has Global Developmental Delay, Seizure Disorder, Gastro-oesophagul Reflux Disease, Optic Nerve Hypoplasia and Postural Kyphosis.

So it feels once again like we’re in an ocean of uncertainty with this strange new diagnosis that no one has ever heard of, trying to stay afloat. Just when we thought we knew everything about her it ends up being something else entirely, all of a sudden everything is different yet nothing has changed. I don’t know what the future will bring, and that is really hard to live with. All I know is Aubree is the brightest, bravest soul and we are truly blessed to be the ones to raise her, and if she can fight through each day then we can to. Come what may, my beautiful girl.

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D (iagnosis) – Day.