Gayle – a Mum

They say it takes a village to raise a child and I’ve never really understood this saying till we found Heads Together. We have found our village, our extended family.

Hello, my name is Gayle O’Brien and I am married to my husband Paul and have two amazing children/adults now; Tom 22 and Amber 18.

Tom was hit by a car when he was twelve while he was riding a scooter outside in our street.  He was first taken to Frankston Hospital then to The Royal Children’s.

At first we were told his scans looked good and he was going to be ok. Then by the next morning his brain started to swell.  The nightmare began. Tom was in ICU for a month, during this time every moment his life hung in the balance.

On two occasions we were asked to turn Toms machines off, as he wouldn’t have a good quality of life; in bed, tube feed, nappies, not being able to talk, our marriage would fail, and It wouldn’t be fair on our daughter to have a brother with disabilities.  Our answer was a definite no, which also lead me to not want to leave Tom for one minute as I felt paranoid.

Early on in Tom’s recovery we needed help, luckily I had my father who stepped in and looked after Amber, and Paul and I never left Tom’s side.

We tried to understand what was going on medically and what we could do.

We realised we didn’t have much control, so we tried our best to learn how to look after Tom ourselves.  We had to pull rank and cocoon ourselves, what mattered most was Tom and everything else could wait.

I wouldn’t let doctors talk in front of Tom because I didn’t want him to hear any negativity.  I stopped asking what they thought, because I didn’t like their answers.

I watched everything and one day when another child came in and had splint boots on I asked why is he wearing those boots and was told so he doesn’t get foot drop while his in bed, so his feet would be in the right position for walking.  I said that Tom is going to walk and where are his boots, that afternoon Tom had boots on.

After a month, Tom was moved to rehab, where the real work began.  Every day I made sure he was moving everything, and he had physio and a spa bath every night.  Tom didn’t really respond properly until 6 months, where he start to hum then talk.

When we started going home on weekends it was hard, but so amazing just all being together. At home, we had hospital beds, tube feeds, nappies, and so much washing.  It was really hard going back on a Sunday night.

We were having physio in Hospital which was great, but most of the time I was exhausted.

Before we were finally ready to come home, we were faced with a group of people from the TAC coming out to decide what walls to knock down and where to put a hoist.  I know they were only trying to help but we found it so confronting and I argued we wouldn’t need modifications as he was going to walk.  I’ve had a lot of looks over the time of ‘you poor delusional woman’, I was used to it.

Just before Christmas, 10 months after Toms accident, Tom walked out of Hospital, and everyday continues to improve.

When we got home, we needed to learn how to function as a family again, we were all extremely exhausted as every day was a challenge, we had great friends and family who wanted to help and I’m forever grateful to them.  After something as horrible as this happens to your family you realise who your real friend are and we had chosen very well indeed.

We had physio, speech and OT at home, and some days it was hard work just fitting everything in.  Some days just don’t work and everyone just falls down.  Those are the days to tell jokes and take it easy.

Tom can now walk and talk, and loves his food.  He went back to his school and did a modified year 12 and now he is at TAFE and has a part time Job at a recycling place.  He is an amazing young man who does motivational talks; to physio’s not to give up and safety talks to younger kids.  I’m extremely proud of him and his sister who is at UNI doing Aviation.

We found out about heads together camp from Lauren our physio from ‘Spot for kids’.  We were a bit unsure about going, as everyday things had become a lot harder, and stepping out of our comfort zone was a worry.  We thought it would be great for Tom to see he wasn’t the only one with an ABI, little did we know we were about the find our extended family.

The first time at camp I didn’t want to leave Tom with anybody, as I’m always scared he will hurt himself.  He has tunnel vision.

After camp the first time, we all had a blast and felt we had found a place where we fitted in, not an easy task.

We started going to camp in November 2009, which is eight years ago, we have enjoyed every camp; to meet up with families we have know for years and new families.  It is a lovely feeling, the kids are now adults and most have taken on roles as leaders and all the amazing people who volunteer their time to helping our ABI kids are amazing. Over the years I have met and watched kids grow up and so many successes, it is truly inspiring.  Every person is different and every ABI is different, some have the same problems but still so unique.  There are so many issues that ABI kids have to face, that having an awesome camp where they can just be themselves is fantastic.

Tom now goes to the ‘Heading out group’ for the over 18s, where they meet up once a month and have lunch which is great and he loves to go.

We have a Facebook page which is great for everyone to keep supporting each other and knowing that people do truly care.  I really love that just like a family, nobody grows too old for camp, their rolls just change.

The heads together camp has played a big part in our lives, we thought it would be great for Tom, but didn’t realise how much the rest of us would get out of it.  There is a parent’s afternoon where the kids are looked after, and parents can discuss any issues they have, this has been a wonderful source of information about how to approach a lot of different situations and just be in the moment with other parents who really understand.

Another really beautiful thing that has come out of camp is the relationship between Tom and his sister Amber.  Going to camp has helped her to understand ABI a little better and realise that she is not the only one with a sibling with an ABI.  Going to camp definitely strengthens our relationships by just being who we are and being completely happy with that, and you will be happy to know I don’t panic any more about Tom at camp as I know he is protected and loved (even when he goes on the giant swing).

They say it takes a village to raise a child and I’ve never really understood this saying till we found Heads Together. We have found our village, our extended family.

I would just like to add a heartfelt ‘thank you’ to Kate for seeing the need for camp for kids with ABI and starting it up; truly inspirational, thank you Kate

 

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