Life through the haze: What is a hero?

I have a beautiful extended family! You know the type of families that are scattered everywhere but would be there for each other in an instant maybe not in person but certainly on the other end of a phone call or a message, just something to let them know they are loved.

Jason, Me, My Hubby and Meaghan

One of my cousin’s Jason has a dear son who is disabled, confined to a wheelchair and we are told terminally ill. There is no known reason for this that his family can be given it is just one of those really crappy things that happens to some families in life. They muddle through life as best they can. The only family holidays they take are short trips to his parents on the South Coast on NSW and to Bear Cottage in Manly. Life for the family revolves around how well Caleb is as to what they can do as a family.

This is the story written by Jason’s niece Tea Luppino in 2011. She was in Yr 8 at the time.

Jess, Tea, Caleb (on Jess' lap), Maya, Asha

Heroes are different to everyone. But this is what I believe one to be…

My hero is not just my hero though, he’s my whole families. He’s only young, and hasn’t done anything to make him hugely famous, but to us, he’s the best hero we have…

Caleb Jaxson Heddle was born 22nd March, 2005. He was born a healthy boy, just under 10 pounds and 24 inches in length. He was the second child in the family, with his older sibling being Asha. At 3 months, some things were suspected, his eyes flickered, and he didn’t respond in the way most children do when adults play with them. In October, 2005, he was diagnosed with Congenital Nystagmus. We were all devastated, but my Aunty and Uncle and Grandparents went to a meeting with Vision Australia and they gave hope that Caleb would live a normal life.

Everything then seemed okay that is, until they came to visit us in the month of May, 2006… Caleb was 14 months old when he came down to visit. He was in my arms when he had his first of many seizures. This was unexpected, and everyone was shocked. He was then hospitalized in Colac and Geelong, and when he was well enough for the trip home to Canberra he underwent a lot of testing.

It showed that his front and rear lobes of his brain were atrophied (not developed). Subsequent testing hasn’t showed that Caleb has any congenital or hereditary condition. Doctor’s don’t have a proper name for what is wrong with him, but the best guess is that he picked up a virus shortly after he was born, or in the hospital.

Fundraising, as well of support from family and friends has helped in the cost of a special bed, wheelchair, and renovations around the house. Caleb’s body cannot control his body temperature, which causes seizures. He has to always be warm, but not too hot, or cold either. He is legally blind, and deaf, and attends a special school well he is well enough. He will ever be able to feed himself, and he had a naso-gastric until recently, which he pulled out and now he is just fed mushy food. He won’t ever be able to walk either, so he gets around in his wheelchair. Despite all of this, Caleb has an angel-like smile, and loves to be cuddled by his sisters when he is well, but doesn’t like to be touched at all when he’s sick.

In mid 2010, Caleb started to regress quite quickly, and in February 2011, we thought we might lose him before his birthday. Luckily, Caleb is still here, but isn’t doing any better. We don’t how much time we have left with Caleb, but each day’s a gift. Asha and Maya both know Caleb isn’t well. Asha is 8, and already knows how life is with Caleb, and even knows what to do when he has a seizure. Maya is 19 months old, and understands Caleb’s condition. She calls him bubby, though he is 6.

We all think that Maya is double the personality for a normal child her age, and it’s a gift that she is a healthy little girl, although she is quite mischievous, and recently broke her nose running into the couch. Asha asked if Mum, Dad, Jess and I could come down and take some family photos, because the last one taken Maya hadn’t been born, and she wanted some with everyone because she knows that we don’t have a lot of time left with our special little man.

Caleb isn’t a hero as such; he is a boy that is fighting for his life. He has had hell on earth, and it isn’t fair. He is our hero, because he is going through all this pain, and still manages to have a smile on his face.

Caleb with Jason's sister Bec (also Tea's Mum)

To you, Caleb mightn’t seem a hero. You might think a hero is something Spiderman. But to me, a hero isn’t a model, or a footy player, or a TV host; it’s something as special, as a little boy going through a lot of challenges, and to stay in our life

An update on Caleb is that he just keeps on going on. Time and time again he defies the medical staff who say it’s time to prepare and yet Caleb is still here with us. This year he turned 10 which was a milestone no one thought he would make. The reality is that no one can tell Jason and his family what the progression will be for Caleb and that could partly be because they really just aren’t sure what is happening. They do know that Caleb’s life won’t be a long one, but his time with his family is precious and his is a light in all of our lives.

A recent family photo

Meaghan and Asha when they first got the van in 07

At the moment we are trying as a family to work out how to get Jason and his family back on the rd. Unfortunately their Van has died. It needs a completely new engine which is really tough on the family especially as the Van has done less than 60,000kms. So now instead of a coast holiday for the school holidays they are stuck at home. Caleb needs to travel in purpose converted disability transport because he can’t hold himself up in a normal seat and now whilst he is well under the weight for a car seat his height and muscle atrophy makes it nearly impossible for him to travel in a normal car seat. So for now that means that even their much needed respite trips to Bear Cottage are also out until they can get some new transport that is suitable for Caleb.