Hi Belly Belly :)

My name is Ki Wolf. (I've changed my name and children's names on the web for privacy, but use them consistently in all my posts)

I'm a 25yo SAHM of three very special, unique and wonderful little boys aged six, three and one.


My eldest son, Corey, has several problems.

First of all, he has a rare, genetic, skin disorder called Epidermolysis Bullossa Simplex (EBS). This has been a hard thing to deal with. As far as I understand it, the gene responsible for the connective tissue between his top layer of skin and other layers of skin is defective. The result is a few things:

He gets blisters all over him. They appear mostly on bending parts of his body but also can come up pretty much anywhere. He, at times, can even get them in his mouth and down his oesophagus if the food he has eaten is too hot, so we have to be careful with it’s temperature. If you met him, you would see that his ankles, heels, toes, knees, elbows, back and nose are either covered or partly covered in scar tissue. He is missing most of his fingernails and toenails as they have fallen off, due to blistering underneath them. The tissue underneath is now too scarred to regenerate more nail.

He also has extremely fragile skin. A bump or fall that wouldn’t result in much for most children, for Corey results in a large portion of skin tearing away like wet paper. During his first year, when he began to crawl and walk, his knees were often torn open, painfully, from the slightest of tumbles. He had to get around wearing knee straps at all times, but the body heat underneath them only caused more blistering.

There is no cure, there are steroid creams and antibiotics for infections, but nothing else. Unfortunately, not enough research has gone into the genetic disorder for any dramatic change to be acquirable for Corey at present. We have learned as a family to deal with it, and he has grown extremely brave.

Corey also has sensory and psychological issues which cause some pretty substantial behavioural problems. By the time he started Prep he was having huge, out of control outburst of screaming and physical violence, back-chatting and defiance. Between these outbursts he is the complete opposite. A sweet, kind, thoughtful and caring individual.

He’s been to two psychologists and is awaiting a paediatrician. So far we have discovered he falls into the grounds of ADHD, ODD and Sensory Processing disorder (Which would put him on the spectrum of Autism). He gets time with a guidance counsellor, school chaplain and a few aid programs at his school/out of school, which really takes a load off my shoulders and helps him to keep on track the best he can with both his self control and keeping up with schoolwork. (This is sometimes really hard! So all the help is amazing, phew!)

We go to a program together called the Management of Young Children Program (MYCP). You might notice I have a post devoted to this program.

The people here are amazing. I’ve learnt many practical ways to parent Corey and guide him in the right direction, which gives me the strengths I’ve desperately needed to cope with his extreme emotions. Every visit is relaxed, productive and above all, healing for all of us. This program is a lifesaver.

His IQ needs to be tested, but every psych, doc and head of each program he’s been to have said the same thing.

“This boy is above and beyond!”

When he concentrates (which is a difficult task for him), he can zoom through a few pages of math problems in lightning speed, read at a high school level and formulate intricate stories with twists and turns, grabbing an audiences attention, reeling them in for an exciting rise of drama, then letting them down perfectly with a satisfying conclusion. He is funny, clever and a pleasure to interact with.

So what is Corey really like? Well…

First of all it is impossible to get anything past him! He clues on so fast to any changes. I can never try to sneak in a chocolate with the pantry door open, blocking the view from the lounge room, because the moment he hears a crinkle (despite my best efforts to be careful and silent), or even sees that I’ve headed towards the kitchen, sure enough a little pair of eyes, a button nose and a small grin appear over the baby gate with the inevitable and pressing question,

“What’s that, Mum?”

Trying to have private, adult conversations with him around can be tricky, too. Particularly when you’d rather him be blissfully ignorant to the topic. There is no code or subtlety that can get around my little boy. If you say it, whichever way you say it, he knows. He could mention it again at any time, in pure innocence, of course. Like in front of the relative for instance, when you’d been discussing with a friend over the phone, using code names, that she’d been rude to you at a family gathering.

“*Insert relative here* Mum said to so and so you were being rude. You should tell my mum you’re sorry.”

Yes, indeed, it gets awkward.

He is passionate about his brother and animals, with a level of empathy and paternal instinct beyond his years. He guides his little brother (three y/o) to meet his new friends at the park, to pat a passing puppy, and to look at a nearby flower in full bloom. He always assures both his brother’s safety and happiness, with a cuddle for a tear stained face and a game for a restless rainy day indoors.

He is helpful with the housework and caring for the little ones. If I give him clear, concise directions, (Thanks, MYCP!), he is on the ball and straight to the task. All in all he is the sweetest of the sweet.

Let me tell you an example of this unique and special little boy’s personality

One day, not that long ago, he accidentally stepped on a cricket on his way into the house. I noticed after a while that he had grown silent, and went to investigate. Sitting quietly in a dining room chair facing the wall, with his head in his hands making soft whimpering sounds was my little cherub. When I asked him what was wrong, he looked up at me, with angst on his face and deep concern in his eyes. He began breathing fast and heavy, then managed, only just, to blurt out the words, “I think I killed a cricket!!” Before bursting into loud, horrified crying.

I sat by his side and put his hand in mine. I said “Ok, ohhh it’s ok.” While he buried his head into me and cried his poor little heart out.

“You know what?” I said

“What?” He replied, looking up to me in desperation.

“I bet you didn’t really kill it. I’m sure Mr Cricket knows it was just an accident, and maybe he’s just having a rest for a bit before he feels better, so he can go home to his family without worrying them with his sores!”

“Oh, maybe.” He said, wiping the tears from his eyes and clinging to the hope my sentence had given him. He took me outside and pointed to the now motionless cricket. We agreed that if the it was gone later on, then it must’ve been OK and had gone home to his family.

Later that night, I scooped up the cricket, and hid it in the garden, then the next morning I showed my boy with a happy grin that the cricket had indeed gone home. The relief in his face was everything I’d hoped it would be. I couldn’t be prouder of my gorgeous little man. The boy with a heart of gold.

Despite his physical and emotional problems and the fact that I have, on more than one occasion been reduced to tears by the sheer difficulty of dealing with both the physical pain he has gone through, his intense emotional outbursts and the affects they have on his home, school and overall life, I will never give up on this beautiful little guy. He is exceptional, not troubled. He is different, not naughty, and above all, he is special. He is my special needs child and he is a blessing to the universe we live in.

For all the Mothers, Fathers, Sisters, Brothers, Aunts, Uncles, Daughters, Sons, Grandparents and Grandchildren of special needs people. Of people who need a little extra help, who are a little different, who are way too often misunderstood. No one can change what they have physically, but someday we will get there. Likewise no one can change who they are, but why would anyone want too? We can shape them, love them, and show them the world is great. All they need is love.

This is just one of my stories. I've taken to writing in a blog and I love it. I've been writing my first novel (a pregnancy journey I am yet to name) and I've just been enjoying every moment.

So I'm just trying to share my hobby with some people who might find it interesting :) Hope you enjoy!