First of all; sorry.
I am sure you are sick of being called mum.
You are more than just mum.
You are your own person.
Please don’t forget that. People in the street see you with the buggy/wheelchair – to them you are mum.
To the nurses in the hospital you are mum. It’s hard for them to learn every name.
To yourself and your child, you are mum.
But you are more than that.
You have your own interests, you just don’t always get the time to explore them and indulge.
You have your own identity, you have your own worth.
To one little person, you are the world.
Sometimes you feel like you are either fading away into the crowd, totally unnoticeable, not worth a second glance.
You’re just a mum going about your mumly duties.
Other times you stand out like a sore thumb – screaming unappeasable child, unkempt hair, eye bags, mucky clothes you probably wore yesterday.
You don’t look as bad as you think you look.
People aren’t watching you and judging, they are watching in admiration as you expertly attach the giving set to a feeding tube. Those people have never seen a feeding tube before.
They think you are a wizard, they are probably in awe of you and your incredible child.
That dribble on your shoulder is a medal of honour, a badge that says to everyone out there, “I am a special needs mum. I am a tube feeding pro.” (Even though last night you accidentally fed the bed and shot medicine up the wall.)
Your role is not just mum.
It is paediatrician, dietician, speech and language therapist, occupational therapist, nurse, gastroenterologist, neurologist and much more.
You work tirelessly to make sure everyone is alive and well.
But you aren’t just all of those things, you are you.
You are just like everyone else, but with some extra skills and responsibilities.
You do it so well.
When you sit down at night feeling guilty about the state of the house, counting down until the next administering of meds and preparing of feeds - you are exhausted.
You worked hard today, and yet you are on your laptop researching neurological irritability.
It’s so easy to feel guilty, to feel like you aren’t doing enough.
You are doing enough.
Okay, so the standing frame didn’t happen today – do it tomorrow.
You can’t do absolutely everything you are told to do all of the time, sometimes you do just need to go out for a brew with your mum and daughter.
Those carbs you ate today, those sugary snacks you threw down without a second thought?
Don’t beat yourself up.
You didn’t have the time or the energy; it’s a coping mechanism.
Right now you are going through a hard time and the last thing you need is to be beating yourself up about your weight.
Do what you need to do to cope.
One day when the time is right, you will get back on that health kick, you will do charity runs with your dad.
It will be amazing. You will be pushing Amy in her wheelchair because after all, you and her are a team.
You made six phone calls today.
Four went to voicemail and the other two were answered by a rude secretary who had no empathy for your situation.
Don’t feel defeated. No one understands what it is like to be you.
That secretary is clearly not having a good day, don’t take it personally.
She doesn’t know she was the 5th phone call on your list.
She doesn’t know that you too...are effectively a secretary.
You have more folders than her, more paperwork than her.
Shrug it off, wait for your return calls.
I know you are frustrated, I can see the paracetamol and anxiety medication by your bedside.
I see your bedtime tea drink in the kitchen – you really want to be able to sleep tonight.
Today you cried.
You felt helpless, you felt like today was groundhog day and you’re not sure you can get through another day.
You got through this day.
You can get through another day.
Things won’t always be as hard as they are right now.
You don’t want to fight for equipment, for tests, for diagnoses.
You want to ask for what you need and get it.
But you know things aren’t that simple. Nothing worth having is easy.
You can’t appreciate the good times without first feeling the bad times.
The prospect of her needing more surgery keeps you awake at night.
Your friend’s child also needs surgery – you are worried for them.
You are compassionate.
Yesterday at the coffee shop you saw that child the same age as yours.
She was looking around very alert at the waiters, the lights, everything.
She was a relaxed happy little girl.
You felt a twinge inside that hurt, you know that your little girl is not that easily appeased.
To a passerby you look lazy for having the ipad on.
But the reality is you are working so much harder than a lot of parents!
You tried every toy in the bag, you charged the ipad overnight.
You are doing what you need to do to enjoy time out of the house.
You feel guilty about that pain you felt that things are harder for you and your child.
Don’t feel guilty.
What you have is unique.
No one else could understand, what makes us different makes us beautiful.
What you have?
It is beautiful, even if it doesn’t seem that way to strangers watching in on your world.
Some of your friends have disappeared from your life, relationships with people you thought were close have fizzled away.
This isn’t because you are boring, it isn’t because you’re a flake. It’s because people don’t always understand.
You are on a very different path to others and they don’t always know what to say or do.
There are only so many times you can cancel on someone before they give up.
But you know what?
The ones who matter, the ones who understand – they will stay.
And one day in the future, when things are easier, those people will get to enjoy the happy you.
People don’t deserve you at your best if they can’t be there with you for the worst.
Your other half looked tired today.
I know how he feels.
You feel like you hardly see him.
His work hours are long.
You miss him dearly.
He’s an amazing partner and an amazing dad.
You’re jealous of the time away he gets, you love your one day at work per week.
You love that drive to work in the morning with your own music on, time in your own head away from responsibility and hospital appointments.
You also feel guilty for needing that break.
Don’t feel guilty. You need this.
So what Im saying mum…Sorry, I called you mum again.
Cez. Your name is Cez.
You’re doing really well. Everything is going to be okay.
Keep drawing those meds, keep fighting for that equipment, keep making plans with friends who matter, don’t lose your identity, keep raising awareness, keep advocating for your child, keep drinking that coffee, keep taking those pills, look after yourself so you can look after her.
Smile in the face of adversity, but also cry when you need to.
This journey can be hard, but it is the most rewarding one you will ever go on.