Raising Max

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Picture this. It’s the day your first child is born. You’re overwhelmed with joy, you’re petrified about how to be a parent, and you’ve never felt a love like this in your entire life. You have every hope in the world for your new baby. The sky is the limit. You won’t let anything, or anyone get in their way. Imagine just 10 weeks later, your precious child is fighting for life in the ICU and you’re wondering if your own flesh and blood will make it to their first birthday. Imagine later being told that with more attentive medical care, this could have all been prevented. Sounds straight out of a bad dream, but this story is an all too real for Melbourne woman Faith Valentine and her six-year-old son Max.

The Nightmare
Max in hospital

   

On June 2, 2011, Faith did ”the paranoid mum thing” and she took 10 week old Max to hospital after feeling something just wasn’t quite right. “By the time we got there he was unconscious, he had gone into respiratory arrest. They rushed him in and put him on life support,” she said. The family was told Max had suffered a huge bleed on the brain.

By lunchtime that day, 10-week-old Max was fighting for life.

The next 48 hours became even more traumatic for the Valentine family as Max suffered almost non-stop seizures. “They were pretty much constant,” Faith said. Not only that, but scans showed that Max’s brain was swelling up at an alarming rate, and he was placed in a coma.

Days went on and still a prognosis wasn’t certain and the Valentine family was left with little knowledge of what Max’s life would be like. Faith remembers that time as “all a blur.” When he woke, the family noticed Max was not the same little boy. “We noticed he had a big droop on the side of his face and that he didn’t have any reflexes on the right side of his body,” Faith said.

Max, 16 days old

The diagnosis of brain damage and stroke was confirmed. As if this news wasn’t already heartbreaking enough, then came some news that would spark all kinds of emotions in anyone.

“Doctors pointed out some red spots on his face. I had taken him to a GP a few days earlier, and he reassured us that they were nothing, but it actually turns out that the red spots were a sign that his platelets were really, really low,” Faith said.

Platelets are the cells that circulate within our blood, and bind together when they recognise that our blood vessels are damaged. They are our body’s way of telling us that something seriously worrying is happening.

Faith said doctors at the hospital then told her “Max should have been sent to hospital two days prior. If that had happened, the stroke wouldn’t have happened.”

Fast forward six years and Max has now been diagnosed with cerebral palsy, ADHD, Autism, intellectual disability, epilepsy and probable Tourettes. These are conditions that Faith has to handle every day, on her own, as well as caring for Max’s two-year-old sister, Silvie.

The Next Chapter

When I met this loving little boy, he wanted to play at the park like any other six year old. The difference was, once Max had a grip on my arm, he was almost able to bowl me over with the tremendous amount of strength he posses. It wasn’t malicious behaviour or anger he was displaying, he just wanted to play. I can only imagine the frightening capabilities of that strength when matched with one of the regular bad moods his multiple conditions bring.

Although no amount of money would ever be able to compensate for the irreparable damage Max suffered, the family decided to seek legal advice and have been in a battle ever since. Max has endured countless tests, examinations and assessments trying to determine what his level of function is and will be. “It was quite stressful. Max’s behaviour is rather challenging, so he made for a very interesting experience trying to assess him. Reading about all the offices he smashed, and all the times I had to restrain him was hugely stressful,” Faith said. About two months ago, the case was settled out of court. And although she can’t discuss details, Faith says she is “absolutely glad” she did it.

Remarkably, Faith remains positive about the future for her and her two children. She now says they are closing that chapter of their lives. “Onwards and upwards, whatever the hell that means,” she said.

But money can only do so much, and the challenges that both Faith and Max face everyday are astounding. Now in his second year of school, Faith describes Max’s transition to Warringa Park Special Needs School as a game changer. “Before we knew what kind of diagnosis he had, people downplayed his abilities. We now know that his IQ is very low, his speech and language is low, so starting school has been a great thing for him,” Faith said. She said the more he learns, the more his behaviour settles down.

Faith also did her own research and conduced her own exercises with him from a very early age, which has helped his functioning.

But there is still a long way to go. “He has broken half my house, he can be destructive, and he has nearly killed his sister that many times. I worry that he will kill someone if we don’t get the anger under control,” Faith said.

Creating The Place

Faith still holds hope that he will live independently, and will do whatever it takes to ensure that the future for the Valentines, or the ‘V team’ as she calls them, is a great one. “He wants to be a digger driver more than anything,” she says. “We might run a caravan park. Somewhere where he can run and he can work and run the place, something like that. If there’s no place in the world for him, we will create the place.”

The addition of Max’s little sister Silvie can be described as both a challenge and a blessing in disguise. Faith believes that she came along for a reason, and she teaches Max that he can’t always get what he wants, and that the three of them must work together. “She has taught him empathy, and even though he made her upset half the time, he is the first to make her feel better.”

Source- Facebook

At two, Silvie is also showing promise as she picks up on the repetition, reading and counting that Max and Faith do at home. She can count to 20 and knows that she lives in Australia when shown a map.

On a personal level, Max’s medical conditions have impacted Faith’s personal goals. “Even working is really hard. There is not a single person in this world that can handle taking care of my two kids. I can’t just find a babysitter,” she says. Faith raises the children as a single parent and says “not having someone to talk to is a really hard part. Not having someone who can mind the kids while I pop down to the shops is really hard.” She did recognise that she needs to work on having time to herself, so she can support Max and Silvie for the years to come. “I need to take care of myself. My anxiety levels go pretty crazy, even on a good day,” she said.

The negative attention and reactions from others is yet another challenge faced by Max and Faith. “Kids can be little assholes. Usually I try not to look at them, but sometimes I do crack it at people who make their little comments,” she said. Faith explains that she sometimes makes people feel really awkward by telling them why Max might be acting the way he is. “You just don’t know what people are going through,” she said.

Although the daily struggles will continue, Faith loves Max with all her heart. “He is awesome. He is the craziest kid. When he achieves something that someone said he wouldn’t, it makes it all a hundred times better,” she said.

“He is charming, he loves people. He makes me laugh every day. It’s alright, I can live with this.”

I am fortunate to have had the pleasure of meeting this family and experiencing their impeccable strength and determination. Their little family unit The V team, comes with its challenges, but is a force to be reckoned with.

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