The aftermarth... Reality... Truth + Hypoxia Brain Damage.
I was a little hesitant on writing this...
One thing that has been the hardest part of this journey is realising the damage her condition has done to her. We worked that out in 2021. Something wasnt right.
Win is suffering memory loss. Medical trauma. Confused easy. Her speech was delayed so much and her hearing is up and down. The daily battle with her loosing it is real. She is so angry because she knows she is not up to the same level as others but recently her rage has taken to another level. She throws furniture and attackes us now. It is like putting out spot fires before they explode in a busfire. Thats me. Souly me. Watching always alert. She doesnt understand jokes. Facial expressions. She is so lethargic. Her little brain struggles to keep up, and take it all in. I am so lucky she is in a school that is so helpful with her because she doesnt qualify for an aide. I know right.
The neuro team diagnosed her with : hypoxia brain damage.
The hardest part for us on this journey is because we are a RARE condition and so unknown you dont meet the "brackets" of requiring help. or funding to have help.
The system was broken long before covid and now its even more broken in all the areas. That is for sure.
We are so tired. Still recovering. Still trying to work out what she needs. But even then what can we access? What can we even afford to access?
You also have no idea what was going to happen and what should have been done early in to prevent issues.
One thing is for sure she should have been learning sign language!
I managed to get us into NDIS by educating myself but even that is very limited. We are screaming for respite which seems to be non exsistent, and our funding of 5hrs a month really doesnt cut it. When you have someone living with you who needs hands on help all day every day you need the live in help.
My biggest suggestions for anyone who has something going on and the lessons I have learned:
1. Fundraise if you have to! We never did and I regreat that so much. Just do it. Get an aupair. Make life easier for yourself. Don't rely on anyone but yourself. If your a friend JUST DO IT dont ask them just do it for them
2. Trust your instincts. So important especially when it comes to medical interventions. They dont always know everything!
3. Talk about your experiences no matter what. What you go through and feel is a real experience and that is alright. It wont be your life forever but its part of your story! Dont apologise for being too much for some people. Ever.
4. ALWAYS try your best to make time for you and your spose! We have been through absolute hell and it is still going.... We are not even close to being ok. But making time for us is so important. Rest and open honest communication.
5. ASK so many questions about help. I have stumbled onto a few recourses that have meant I have someone clean my home 1 every 2 weeks. You have to ask all the questions and get pushed into the right areas. It is a mind field and so exhausting but it could be life changing for some! I know the cleaning is a huge help.
6. Trauma is real and it will effect you and your whole family. But that is ok. Acknowledge it.
7. Find your support and what works for you. If you love it keep going as much as you. Don't stop the thing you love. Be it your sport or your gym class. Keep that momentum there.
From all these hard weeks we have met alot of amazing people, and honestly learnt so much about ourselves.
I really wish regional areas we had more medical trauma ot access, I wish there was more talk around trauma and complex trauma. This has been something I have really found interesting while in this groundhog day and the effects. There is so much more i want to study in this area in hope to bring more awareness to myself and others.
So thats a little real life insight.
This photo is from a camping trip last year. I cried so much. Winnie screamed at us constantly. Forgot where we were going. Screamed at us because the car ride was too long. Screamed because she didnt remember where we were going again.... Screamed because the radio was too loud. Yet said it was the best nigt of her life....
