1. To know how much you matter.
You are loved, important and valued. There are days feel an overwhelming guilt that you aren’t with me. You go to school, and you go to respite.
When you aren’t around me physically, you’re one of the only things I think about.
Everything I do is with a view to making your life easier and more enjoyable.
I do my jobs when you aren’t there as much as possible so that when we are together I can enjoy you fully and completely. It’s not just me though – daddy feels the same.
Your whole family feels the same. In fact, our friends, and even people we haven’t met that know of your journey – they are all rooting for you and see your importance in this world.
You fought hard for your spot here on this planet – harder than most of us have had to fight.
There are people out there who won’t understand, but they don’t matter – you, and your happiness, do.
2. To not be defined by what you can and can’t do.
You are not defined by what you can and cannot do.
A wise lady once said to me “If you judged me on my ability to speak Mandarin… I’d look pathetic. But if you judged me on something I can do or can enjoy… That’s what it’s all about.”
I’ve seen you struggle amongst your peers to keep up, or even just to take part sometimes.
But with the right people around you, and with your sheer determination – none of it matters.
There are so many things mummy can’t do either, but there is plenty I can do. You are the same.
Not able to walk? We’ll get you a cool wheelchair to show off to your friends.
Not able to eat? So what… you have a formula that’s got better nutrition in it than any of us get.
You have learned to communicate without words and get better at it everyday.
You amaze me everyday with what you can do and the challenges you have overcome.
Through you I learned to take nothing for granted and to celebrate everything.
3. To be happy and understood.
My entire life pretty much revolves around meeting your expectations and needs. I spend a spend a lot of time ruminating, wondering, planning.
I want to know what makes you sad and what makes you happy. One day maybe you’ll use eye gaze technology to make sure everyone is aware of what you want or need.
But until then we will work tirelessly to make sure we hear you and read your expressions, sounds and movements.
There is a whole world out there that don’t know you how we know you. They might not know how to make you happy, so we need to teach them, and find ways for you to tell them.
It pains me to think of your eyes screaming something out to me, and me not interpreting you correctly.
You must get so frustrated with us.
If I’m ever not with you I feel a panic inside that maybe your needs won’t get met, or if you’re thinking I’ve abandoned you.
Sometimes you get so distressed for seemingly no reason – I hope one day we can get on top of that and we can figure out how to placate you.
4. To feel socially accepted and have access.
This is a big one. There are too many places we can’t go because of steps of lack of facilities.
The places we do go… sometimes we come across people who don’t understand.
I really hope that one day more people in the world learn some compassion and respect that people are different.
What makes us different makes us beautiful. You are beautiful and you deserve for everyone to accept you and provide access.
I’ve seen children stare, and even adults – unabashedly.
Let’s stare back and smile and wave.
I’ve heard people tut when you have a moment of excitement and can’t keep the squeals of joy to yourself.
I’ve seen other people be obnoxiously loud, and you struggle to cope.
One day we’ll find the balance.
I don’t expect friends round for tea, or sleep overs or a lot of the “typical” things I thought would happen before we met – I hope that we can build our own “norm” and traditions and that your crowd support and adore you how we all do.
5. To have no/minimal pain.
Every intervention or therapy you need – it’s a reminder of how hard you have to work to achieve a level of normality in life.
Recently at the dentist I had to help two people restrain you whilst they performed a descale and polish.
You were so distressed it’s going to take 4 sessions. I hated that you didn’t understand and thought I was helping these people torture you.
Everything we do is with a view to preventing pain, or surgery.
Too many times I’ve had to sign a consent form, or watch you fight against a cannula insertion not knowing why it’s happening.
I see your muscles fail to loosen in the morning and spend time massaging your legs and helping you stretch.
I see you writhe in pain from your sore limbs.
I wish I could take that pain away.
No child or person should have to endure such pain. I wish I could take that pain for you.