(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. 

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(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!

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?

Fatigue.

Having a disabled child is like being suddenly thrust into a club you didn’t ask to join. You’re shipped off to war even though you never enlisted. But you have to put on your armor anyway, and know that if you’re lucky, you’ll discover new sides of yourself. Like a will you never knew you had. And you’ll get to see new sides of the people who matter the most to you in the world, as they wrap you in their love and lend you their strength when yours is running low. And then you go off and you fight. You fight like hell. Because, really, what other choice do you have? 

Aubree is actually awake in this picture, ill, sleep deprived, content just to be held. Lanky limbs folded in my lap as she nestles into my heart. Her little face. You are worth every moment of this fatigue 💟 

Fatigue.

“I’m Tired.”

“I’m just tired.”

When people ask you what’s wrong, that’s what you say.

You say I’m tired.

Like you just didn’t get enough sleep last night. Like maybe if you get a couple extra hours tonight, or rest up this weekend, you’ll be better on Monday.

But deep down, deep beneath all the fake smiles and the jokes you make to lighten the mood, you know that’s not it.

You might be tired, yes, but you know sleep won’t fix it.

Because it’s life you’re tired of. You’re tired of getting lost in your own head, of drowning in the thoughts and self doubts that pester you every second of every day, while you fight to keep your head above the tides.

Those same tides that threaten to wash away the makeup you carefully paint on every day so you look more like a person and less like a hollow shell of who you used to be.

Can’t they see that what you’re really tired of is pretending? How do they not notice that your porcelain smile is chipping more every day, your body armor has dents in it, your face paint is running, and the rivers in your eyes are bursting the dams you so carefully construct so as not to drown everyone around you.

So when they ask you, “Are you OK?” you just say “I’m tired.” Because you believe it’s the only way to keep them safe as you self-destruct on the inside, the only way to protect them from the disaster that is you. You believe you have to lie so the ones you love don’t look too close.

But you’re so, so tired.

And that’s OK. If there’s anything I’ve learned, it’s that it’s OK to be tired sometimes. “Normal,” even. And you don’t always have to have a reason. Because sometimes just keeping it together is exhausting.

When you feel like this, it’s important to know you’re not alone. You are not the only one who feels this way.

“I’m Tired.”

To You, the Self Doubter.

To you, the mum sitting in the waiting room of your child’s doctor’s office. You’re waiting on your child’s latest test results. You’ve done this a hundred times before, but your stomach is still in knots. Your hands are fidgety. This never gets easier. You’re scared and you feel alone. Your eyes scan the room as you admire the other mums who are calm, reading books to their children. You suddenly feel guilty. I should be reading, too, you scold yourself. Then it happens. The nurse at the door calls your name. It’s your turn. You panic because you’re not ready to hear the news. You swallow the lump in your throat and walk through the door. You begin to wonder what’s wrong with you. 

To you, who feels brave enough to take your child for a walk in the park or maybe even to a local play area, only to feel overwhelming anxiety about all of the able children around you with all of their able parents watching wondering why you’re signing to your child, why your child isn’t running around and playing, wondering why you’re single handedly trying to manoeuvre each of your lanky almost-4 year olds limbs into a baby swing while pretending to have a good time when really all you want is to run.

Time and time again, we question ourselves and struggle with our own decisions, and carry the weight of the consequences. We’re constantly criticizing ourselves. Is there something wrong with you because you worry endlessly? No, it’s because you love them. Are you abnormal because you feel isolated, tired and scared? No, you feel all of that, and no one blames you. 

So here’s to you, the mum who deserves a thousand praises for loving and fighting for their child endlessly.

To you, the mum whose fears never shadow their courage to try.

To you, the mum who’s doing everything right and doesn’t even know it.

You’re not alone — I see you, I am you. 

To You, the Self Doubter.

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.