She turned in to someone pretty amazing.
She turned in to my Mum.
They make an incredible team. The odds are heavily stacked against their relationship. With my medical history, statistics show that most marriages would have ended years ago.
They support each other. They argue, but they support each other. They hold each other up on the worst days. They share their fears and anxieties with each other, and they hold fiercely to their love.
They make sure my sisters and I grow up in a safe, loving home.
It's her birthday, and I don't know what to get her. So, I'm going to tell you all how amazing she is.
I'm going to break her down in to feelings, to help explain her a little more. I hope she doesn't mind.
She might never admit this to you, but she carries around a lot of guilt. She feels guilty about my birth. She feels guilty, because she thinks my brain damage is her fault. She knows this is not true. We tell her its not true... but, she carries that feeling with her, and it may never, ever leave her.
She feels guilt when she doesn't do therapy with me, even when there are simply not enough minutes in the day. She feels guilt when she thinks I might be missing out.
Guilt hurts. I wish I could take that from her.
In the last four years, Mum has spoken on national radio, local radio and for magazine articles over the phone. She's spoken on numerous WIN News segments and confidently shares my story with local newspaper writers. She has delivered a ten minute speech at an emotional ceremony; telling of her worst days.
She shares our family's heartbreak and sorrow, in an attempt to raise awareness.
She regularly steps out of her comfort zone, to make sure I have the best opportunities and to help people understand a little more about cerebral palsy, cortical vision impairment and childhood cancer.
She's so brave, and she's teaching us to be strong and confident.
She let me go surfing, even when she knew I couldn't swim! She was so scared! But, she thought I would love it... so, she let me go.
She is so brave.
She feels these emotions because it shouldn't be this hard. Being a Mum should not be this hard.
She feels JUDGED by many, many people... quiet, opinionated people, who make side comments. You know the ones... we all have someone like that. Unfortunately, they probably don't read about my adventures, so they have no idea what actually goes on. We'll leave them to their thoughts.
She has a teaching degree and a degree in Occupational Rehabilitation.
Ironically, she used to work with Mission Australia and Vision Australia. She also worked with people with cerebral palsy.
She has read constantly, since I was born, to keep up with technologies and concepts.
She has an incredible understanding of me, my disabilities and equipment. She can easy and fluently list my medical histories and procedures. She usually knows what procedure a nurse or doctor will do, and how it is done. Many times, doctors, paramedics and nurses have asked her if she is medically trained. She is clever.
Her back is out. Her pelvis is out. Her foot might have been broken. Her wrist has been severely sprained.
Mum goes for fortnightly therapeutic massages. The lady who massages her makes her cry. She often has to tell Mum to 'breathe'. Mum has almost kicked her. She has given up on 'fixing' Mum and now tries to make Mum 'as good as possible'.
She does an amazing job.
Mum is broken because she is always lifting me and my equipment. She is broken from all the nights spent sleeping on a hospital chair or fold out bed.
She will never admit to how sore and broken she actually is.
(She is a bit STUBBORN, that way!)
She is determined to make sure I have every opportunity I can. She is TIRELESS in her efforts and her ENTHUSIASM has taught me to always have a go. My preschool report said I do that. The #nolimits mantra is important to us.
Her determination has helped people to see that I can do pretty much anything, we just have to think of ways to make it happen. This can be exhausting, but luckily for me, she #nevergivesup and I have had so many cool adventures.
She has to be! Some days, we might have three appointments, in three different places in the Illawarra. She often has to drive me a couple of hours to Sydney, for a ten minute appointment. She has therapies and reviews to get me to, and almost never forgets an appointment.
Our calendar is crazy, with the meetings and appointment times every where.
She is so EFFICIENT and organised, that everything gets done, and we still have time to play.
She is CHARITABLE. In the last four years, we have raised over $33,000 for charity. This takes a lot of time, preparation and organisation.
She is RESPECTFUL and THANKFUL to the people who see me. Me. Dexter.
She loves it when people can see past my disabilities and just include me, like they would everyone else. It might be harder with me, but it can be done. I'm non-verbal, so my answers are different, but I have opinions and I have things to say. Some people can recognise that, and they take the time to listen. Mum and Dad respect people for that.
They feel DISAPPOINTMENT when I get dismissed as being 'too difficult' to understand or include. Some people pretend I'm not even there.
A lot.
The hurt is something she will hide. She thinks it is a weakness, to show her pain and hurt. Sometimes, people say and do things without thinking. At these times, Mum might start packing up quickly. We might leave suddenly. She might even seem to be being RUDE. What you don't see, are the tears she is hiding. What you don't know, is that her heart just broke a little more.
Explaining the HEARTBREAK, SADNESS and FRUSTRATION can be too difficult. Sometimes, it's easier to simply leave.
Mum cries a lot. She tries to hide her tears from us. She hates crying in front of us. She prefers to go to meetings alone, when she knows she will hear bad news, so she can cry without upsetting anyone else.
And then, when she feels stronger, she will share the news with other people.
She is hurt and SAD, but she will do everything in her power to protect everyone else from that.
She is thankful for the people who include me. She is thankful for the amazing opportunities I am offered. She is thankful for the genuine love and care I am shown. She is thankful for the house renovations, that made our life indescribably better. She is thankful to the people who offer to carry one of my sisters, a bag or me. She is thankful for the dads who helped when the littlest one threw up at a party. She is thankful to my friends, who want me to come to their birthday parties. She is thankful for the smiles and support.
She is GRATEFUL that my cerebral palsy is not worse. It could be.
She is grateful that I am here. She has seen many families lose their child. She has sobbed while listening to the screams of a dying child's mother. She has seen my body; blue and floppy and being resuscitated. She has seen it a few times.
She is grateful for the finger prints on the TV, because it shows my sisters can walk, and reach, and touch things and play. These are things she wishes I could do.
She is very grateful.
Mum and Dad would love to see me running around, kicking balls and jumping off walls. They would love to hear me fighting with my sisters and refusing to go to bed. Knowing the limitations cerebral palsy puts on me is heartbreaking, but... Mum helps us to remember to always chase the rainbows and silver linings.
She is HOPEFUL. She helps us remember to put in a little more effort, so that great adventures can continue to take place.
If you have a bad day, she will take a moment to try to make you smile. If it's your birthday, she'll probably have a card for you. She always thinks of others.
She is EXHAUSTED.
In the last four (almost five) years, she has had very little sleep. She has been told some awful, awful news (on more than one occasion) and has chosen to fight. We are so busy with appointments that she hardly gets time to rest. My sisters are very active and busy, and they don't let her rest.
Mum is emotionally and physically exhausted. But, if she stops, she would feel as though she was letting us down, so she will never give up.
She is scared for the future. She is WORRIED about me, and what will happen to me when she and Dad can no longer care for me. She is scared about what my future holds. She is scared about my schooling. She is scared my cancer will return. She is scared I will choke and die in my sleep, and that she won't hear me. She is scared I will be left in a corner and forgotten.
She is OVERWHELEMED by the responsibilities that come with being my Mum.
She is STRONG because she talks about these feelings with my Dad.
She knows her triggers, now. She knows how her anxieties manifest and how she feels when her anxiety is coming on. She understands, so she is a little stronger with coping, but its not easy.
After my traumatic birth, where I was raced away from her and she didn't see me for 24 hours...
After my four months in hospital before coming home; countless procedures and tests, countless monitors alarming...
After my hepatoblastoma (liver cancer) treatments and surgeries...
After my femoral osteotomy and my countless other surgeries and procedures... Mum has post traumatic stress disorder. She can be watching television and hear a monitor alarm, and she will start to feel anxious. She can see me cough on some food and feel anxious. Certain dates are triggers, as well as certain people and places.
After my last temperature, which resulted in Mum watching my six minute seizure, my next temperate will likely cause her a heightened level of ANXIETY.
Mum carries a lot of stress and anxiety with her. Her strength is in her awareness of it, but the awful feelings still hit her regularly.
She is a Mum. A good Mum. A great Mum.
She gets CRANKY and TIRED and ANNOYED, but she loves us and there are no limits to that love. She is PROUD of us all, and the things we do.
She loves our kisses and cuddles, our little fingers and our cheeky characters. She loves being with us and watching us grow.
She has so much love for us all, and we are so lucky to be hers.
My Mum and Dad are doing the best they can. And, they are kickin' it!
This post is for my Mum. Hopefully, you have a little more of an idea of how she feels and what our life is like.
**Mum can feel every one of those emotions, every day!
She is stronger than she knows, weaker and more scared than you realise and full to bursting with love and pride.
I love her.