Being non-verbal with a vision impairment is tough.
Our life can be very challenging.
We've cried many tears, but we've also had incredible happiness and felt immense gratitude.
Our life is one big rollercoaster of ups and downs.
Our highs are beautiful moments, full of pride and love and hope.
Our lows are heartbreaking and rip apart our old wounds.
A single day can see us laughing and then, hitting rock bottom. That's happened more times than we would like.
We figure it's best just to strap ourselves in and make the most of the ride!
Fear of what a community would think. Fear of exclusion and isolation.
And, every now and again, that fear niggles at us... causing us to doubt. When we go somewhere new, we wonder and we worry. We wonder how my disabilities will be seen and how people will react.
To cover up that fear, we actively look for new adventures and we determinedly look for ways to adapt and be inclusive.
We're getting very creative and resourceful!
And, we find, that usually... people are very accommodating. They want to be inclusive! They want to be supportive! Sometimes, people are not too sure how to do it, but they are happy when they find a way. People are good.
There's no right or wrong way to carry me.... though, upside down might not be the best way...
I'm tough!
I'm strong and brave and determined.
I have a very high pain threshold.
You won't hurt me easily. And, if you do hurt me, I will cry out. I will let you know.
I can be hurt; emotionally.
I have always recognised the good in people. I recognise a genuine voice and an empathetic touch. I recognise kindness and generosity.
I also recognise pity, which I don't want.
I know when I'm loved and cared for.
If you've ever genuinely reached out to me and held my hand, I've returned the kindness and held yours. If I don't believe a person is genuine, I will only hold hands for a few moments. Then, I will let you go.
(And, I'm a boy... and most boys don't want to sit and hold hands!)
If I know you care, I will hear your voice and look for you. I might even smile. You might miss that, but it's something I always do.
I'm grateful to all the people who see me and love me, for me.
Sometimes, a wheelchair and a boy who doesn't speak or smile or look you in the eye is just 'too hard'.
And, that's ok.
It hurts!
But, that's ok. We get it. We know. Life with cerebral palsy is hard!
Every. Day.
It's those times that we often leave, or move away.
You might not even notice... or, you might feel relieved.
You might notice that the grown ups will be touching me... they will have a hand on my arm, or they will be brushing their fingers through my hair... or, they will be whispering how they love me, in my ear.
It's their way to be protective and show me that I'm loved and good and strong and clever.
Remember the day the ladies in the park stood beside us and whispered about me?
We're trying to teach them to be strong and kind.
We're so proud of them.
The therapists who see me, see my strength and see my character... we love them for that. We want expectations to constantly shift, as I get stronger. We want that bar to continue to rise, so I can continue to improve.
A couple of therapists give me cuddles and sneaky kisses, while we work. We like that. We like that there is a strong bond. We like the mutual trust and respect.
And, I like that I have a male therapist! My first one in five years! He takes me swimming. He lets me dive under the water and taught me to spit the water out. He's teaching me to float.
With my extra needs, I scare some people and they don't want to be alone with me. So, we really like the people who are strong and secure enough to care for me and help make me be the best person I can be.
Life with cerebral palsy is hard! We often make it look easy, but it is hard! Every day brings a challenge. Constant frustrations and difficulties wear you down, and anger is inevitable.
We try not to focus too long on anger, because it doesn't do any good.
We try to teach the sisters to express what they are angry about and then to find a solution. We try to do the same.
And, we sing the "Frozen" song... "Let it go!". (The girls love that song! Don't tell anyone, but I kinda do, too.)
Some people have been around the whole of my life, through every rollercoaster day. Some people drop in for a little while and leave.
Some people drop in every now and again and show support.
We have met some really incredible people. They have touched our heart with their unexpected kindness and love. Living with disabilities is hard and when you make us smile through our tears, you are helping us more than you will ever know.
You are shining lights down an awful road, leading us out of the darkness.
Financially, Dexter would not have as much equipment... equipment he really benefits from, without the support of many. This equipment helps us believe and raises our hopes.
The house... the positive changes that brought to our lives... we will never be able to explain just how much that helped us, emotionally as well as everything else.
The cards, gifts, words... you give us strength and make us smile.
The comments thanking us for our honesty and for sharing our story... you encourage us to continue bearing our hearts to the world.
Overwhelming.
Most days in the last five years have been rollercoaster days. There's always something to worry about and there's always love.
There's something new we are monitoring, right now. It's worrying us a little, but we're just waiting and watching for a little while longer. It seems there is always something. If it comes to anything, we will let you know.
My muscles are becoming really tight, at the moment. It hurts. It makes doing exercises difficult, too. The tight muscles keep me up at night, too.
This post is also a 'lay our hearts on the table' post. (It's like the post for Mum.)
We want to be honest... warts and all.
Having a child with a disability is hard! (Add in as many adjectives as you like.)
If we make everything look happy and positive, other families who read our posts might feel as though they are not coping, or not doing a good job.
We'd hate to make anyone doubt themselves.
To them: Find your silver linings. Raise your expectations. Find a way.
And believe in yourselves. Research. Ask questions. Trust your gut.
We swear. (A lot.)
We drink. (Not as much as we'd like.)
We cry. (More than we'd admit.)
To all the special needs families, the siblings and beautiful friends... we believe in you. xx
#turningfive #birthdaycountdown
This photo... Never a dull moment!