When we are catapulted into this special needs and/or complex medical world, we sometimes find ourselves floundering in tonnes of information. If only we could access things in one spot, which would then free us up for the most important matter which is to help our kids the best way possible. From balancing therapy and therapists, to the correct choice in schooling, to medications and doctors, best holiday spots (you can go further afield as long as there is a hospital nearby, right!) – the list is long and there never seems to be enough hours in the day to do everything.
I’ve been chatting to a few friends lately about this very topic. There seems to be a misconception that when we get a ‘label’ our problems are somewhat solved – in that we should get the answers we are seeking. Unfortunately, that’s rarely the case. It’s more of a case of opening a can of worms. Speaking from our own experiences with living with HHE in Australia, we are fortunate to have access to both a great public medical service – Medicare as well as a private sector which uses early intervention programs – like Better Start (the names vary depending on age and diagnosis). There is a limit though. For what we currently use for Mikey, it runs out when he’s 7 years old – he turns 5 in September and we’ve actually very little left in this early intervention scheme. Therapies are costly and frequent therapies of 5 different therapists add up. What I have seen, as I am sure you have too, are Go Fund Me Pages and Community Pages popping up in Facebook to bring awareness to conditions and situations where families have simply ran out of their funds.
Another big issue, is when our kids have gone through schooling, and are at the age to go onto Uni or possibly gain employment, but circumstances prevent them from doing so. If we think it’s competitive for our neuro-typical kids, it’s even harder for the kids with the chronic challenges and disabilities – opportunities are scarce. Speaking to a friend of mine the other day who works in the field, she explained that the clients she works with – the young adults – 99% of the time, if they have the capacity to work then they do want to work. They want to be included and contribute to their community, just like everyone else. But the hard faced reality is – employers are scared.
Such is the case for young Jordan Carroll aged 20 who has certainly tried. 12 months of unpaid work experience, and not one offer of a job. He is motivated, ambitious and passionate. When he was told by doctors he would one day lose 100% of his sight, due to an inoperable brain tumour growing on his optic nerves, he decided to train. He started training for the Paralympics and won silver in skiing when he was 18 years old. Jordan is now 20 and is also training hard again for the 2020 Paralympics. Due to his vision impairment, and his ongoing treatment, he has really rough days. But on the days he can, he trains and he trains hard. He trains with his dad, who pilots the tandem bike. Their community page is amazing with updates on what Jordan is up to. Please check it out here: Jordan’s Journey and the Paralympic Dream
This young man, who has been fighting a tumour throughout the entirity of his teen years is achieving things that we can only imagine. When I was a teen, my biggest worry was what I was wearing to school the next day! He is a true inspiration not only in the sporting sense, but in character as well.
Jordan’s parents have supported him each and everyday, and have watched him fight hard. During this time, they have raised awareness for other large and smaller organisations:
They are now fatigued with fundraising. This is one of the reasons why they had to set up their Go Fund Me page, as Jordan could not gain employment, to fund his dream. The Go Fund Me page came about when Sally Dingwald, after seeing a comment online by Marie – was moved by what she was reading. Sally wanted to know more and contacted Marie to see how she could help. Marie lives in Queensland and Sally lives in NSW – they are yet to meet. Sally, together with her daughter, put together a video to go with the Go Fund Me page. It’s here: Go Fund Me – Jordan Carroll – video
I discovered Marie’s Go Fund Me Page through my very good friend who also has a child fighting cancer. I connected straight away with Marie. As a mum, who not only nearly lost her son, but also trying to not lose a marriage which is under so much pressure that some days you feel like you are living in a pressure cooker – not to mention that you are trying to remain solid for your other children, is a situation that not many can relate to. Individually, many can have these circumstances, but the combination of all these factors in one hit, all at once, occurring every single day is just not common. When you make a connection – as I did with both Emma and Marie, you cut to the chase, friendships are formed and a new support comes into your life that almost revives what you felt was floundering.
I am passionate about this story as is Sally, and of course, as is Marie. It needs to be told – not to just give others hope to see how you can live a very meaningful and rewarding life, but to also show that it’s time. It’s time to change our ways towards our attitudes with health, chronic illness and employment. These stories need to be told in how the human spirit, time and time again, will defy the odds and prove the doctors wrong (which by the way, the doctors love! They absolutely love when we can prove them wrong. They want to see their patients defying the odds).
I am again fortunate, in that my son is only just about to start schooling next year in 2017, so we are only at the start of this next chapter. But what happens in about 15 years time, after defying the odds – then what? Will he be in the same situation as Jordan? The more I understand about this incredible family, the more it strikes a chord with me. I certainly don’t know a great deal about cancer – we were not dealt that card, but what I do know, is that cancer affects us all. It affects our children, our parents, our grandparents, cousins, brothers and sisters – family and friends, and even our beloved animals. Cancer, cystic fibrosis, epilepsy and seizure disorders, dementia, strokes, ASD, aspergers, mental health issues – the long list of chronic conditions – rare and otherwise, affect us all in one way or another.
It’s time to change the face on how we deal with these health issues as a community, as a nation, and yes even globally. Are you with us?
Keep tuning in… there will be so much more to come!