Some days you wake up, blissfully unaware that your life is about to change forever. How could I have known, whilst drinking my morning coffee on June 2nd 2010, that my son would end up on life support later that day? He was 10 weeks old.
Max was just ‘a little bit off’ that morning. He was a bit grissly, a bit sleepy and a bit pale. Symptoms that were so darn subtle in a 10 week old and nothing catastrophic enough to indicate that a blood vessel in his brain had burst.
He had been eating well, sleeping well and he had no temperature. But, the niggles in my tummy grew stronger and stronger. Something wasn’t right.
I decided to take him to the Children’s Hospital. I even packed a big bag of supplies- bottles for him and sandwiches for me, thinking that we’d be sitting around the Emergency Department all day. By the time we arrived at the hospital, his body was limp and he was in respiratory arrest.
Later that day, we were told that he’d suffered a brain hemorrhage. His platelets were dangerously low and this had caused the bleed.
The next day, we were told he’d had a massive stroke that had damaged almost half the left side of his brain. On that day, he had seizures, lots of seizures. The seizures were causing his brain to swell dangerously, so he was placed in a medically induced coma. It was important to me that mine was the last voice he heard. So, I took a deep breath, read him his favorite story and sang incy wincy spider. There was a giant lump in my thoat and tears streaming down my cheeks, but somehow I got through.
We then spent 5 weeks on the Neuro ward, whist doctors frantically searched for a treatment, that would stop his body from attacking his platelets. In the space of 5 weeks, he had 94 platelet transfusions and the occasional blood transfusion.
Top Comments
KL72rr Thanks for the blog article.Thanks Again. Awesome.
I am the mother of twin boys...One whom started having up to 80 seizures a day at 8 weeks old plus various other issues...Due to the fact I had twins I was entitled to 10hrs of respite care a week and a cleaner from the council for the first 6 months.
I too would spend 6 plus hours a day doing therapy with my son and researching other forms of treatment as the doctors had no explanation to explain what was going on just wanted to medicate and hope for the best...This was 20 years ago now and we were not lucky enough to have the social network or the internet...All my research had to do wiith a mothers intinct and trialling different things...eg diet etc..
I had to say was very hard because I had his brother whom was what is classified as a normal healthy child...so hence I had a comparision..
I went to various doctors and specialists and even had DHS call in as I refused to keep medicating my son.
I was told by many doctors and specialists that he would be placed in a home by the age of 16 as he would not be able to participate in society like normal people...grrrr I hate the word normal.
I have spent the last 20 years fighting for him to feel like he is a worthy member of society...isn't that our job as a mother??
I fought for speech therapy...physio, occupational therapy, and even a teachers aid for him though school.
At he age of 16 he was placed on disability allowance...But yet he and I wanted more for him.
As he was a twin he kept fighting to be like everyone else and so did I.
Unfortunately there is always a road block...But we kept fighting them.
My point is....The government is happy to give him a disablity payment for the rest of his life...Isn't that more of a drain on society???
Than they were to help me improve his quality of life so that he could participate in life to the best of his abilities...
I had to work nights and employ a babysitter to give him what he needed and had no social life at all as people could not and still do not understand why I chose to put him first....The word can't is not an option for either of us.
You are incredible Faith...Not only are you doing everything for Max (therapy, working, research etc)...But you are fighting the government to help others...whom like you want to give there child ever opportunity to live a wonderful future.
The government needs to change there stance and implement an early intervention policy...Give money to parents to stay at home and work with there children to change the long term outcome on their lives....Also money is needed in many early intervention programs for kids...More funds and accessability for teachers aides physios, speach therapists and OT's....Not be happy to just send them a cheque when they reach 16 which they will get for the rest of there lives.
I am happy to say due to hard work my son finished main stream school year 12.
And has had a causal job for 4 years...But the (centerlink) government assessors say is work capability should be no more than 8 hours per weeks....Wtf....We haven't worked this hard for him to live on disability...( And he won't)
Seriously there needs to be a full overhaul to the whole criteria...
I would really like to know why if you go to your local pokies venue and speak to people they will say i am on a disability pension...yet there is nothing wrong with then...But putting there whole payment into stupid machines....
Yet a parent with a seriously ill child cannot get a carers pension...Where is the justice...
Keep up the fight...There as so many who are with you:)