Paddy and I got married 13 years ago when we were the ripe young age of 19. In the first year as many couples do we wanted to start a family. It was time. We wanted to have babies of our own. It was also in that first year that we had our first pregnancy loss. We experienced a ruptured ectopic pregnancy, yet we were back on the train to try again which we then suffered our secondary infertility. Our prayed over and over our time will come. Fast forward four years later we welcomed our first little girl Alliyah. What a beauty she was she was she came into this world to fill our hearts with immense pride and joy. Alliyah was everything we had dreamt off yet she was showing some concerning symptoms once we started introducing food. We were first time parents so still learning but we just knew something was not quite right with our little girl. We are talking Vomiting, chocking, weight loss, major food refusal. She was not able to swallow certain foods very well without them being completely smooth. Alliyah went through years of tests and was diagnosed with Eosinophilic esophagitis. Eosinophilic esophagitis (EoE) is a chronic, allergic inflammatory disease of the esophagus (the tube connecting the mouth to the stomach). It occurs when a type of white blood cell, the eosinophil, accumulates in the esophagus. The elevated number of eosinophils cause injury and inflammation to the esophagus. During that time and dealing with the cards that we had been dealt with our first born baby we lost another two babies. It was another ectopic pregnancy and then a sweet baby with trisomy 16. During this time where are hearts were healing we found some light. We welcomed our second daughter, Chloe who is now 5, she’s a beautiful firecracker and just what we needed to heal our broken hearts. We then welcomed another sweet girl Ella, who is 2.5 now! Things with Ella seemed like a dream. She was such a good feeder, chunky, and such a good sleeper! (yay for good sleepers!) Until one day when this dream bubble that we were living suddenly changed. Ella dropped weight, fast. She started dumping, (undigested milk in her nappy) and vomiting nonstop. The doctors recommended that we start solids, and things then got worst. We were living in a complete nightmare watching our baby so sick. She was vomiting so much she would end up unconscious. Grey and floppy. Something that no parent ever wants to see their little baby go through. This was happening every single time she ate. It happened with every sort of food she consumed. S he was losing more and more weight and again, our hearts started to break. Ella was then diagnosed with Food protein-induced enterocolitis syndrome (FPIES)m which is an adverse food reaction involving the immune system that mainly affects infants and young children. It is caused by an allergic reaction to one or more ingested foods which results in inflammation of the small and large intestine. Ella only had two safe foods at the time, sweet potato and pumpkin. She was so malnourished that the doctors decided she needed some help and her tube feeding journey began. We started noticing that she was now dumping her safe foods, vomiting her bolus feeds and again losing weight (hearts continuing to break watching our baby girl so sick) After some investigation her doctor noticed that she wasn't digesting the formula. It was just sitting in her tummy. We started her on some medication to help move it through faster. She then got a peg, a tube in her tummy instead of her nose. As her face was breaking down and she had pressure sores it was then I then found out I was pregnant. A happy surprise baby (hearts starting to heal again) With this pregnancy we had No fertility meds! (our little miracle!) 6 weeks after Ella’s peg insertion paddy and I noticed she was acting strangely. She was sleepy, agitated and just super sick. She had a rash all over her stomach, so we took her to hospital and at first it looked like she had an infection called cellulitis. Turns out we were all very wrong. The day we were about to be discharged she was thrashing on the bed, I noticed that her pyjamas were covered in black ooze. I pulled her top up and saw that her peg was hanging out of her stomach and there was stuff coming out everywhere, so I put pressure on it and the doctors called us an emergency transfer to Royal Children’s Hospital. Lots of Lights and sirens and a very scary ride later we were informed that Ella had Buried Bumper Sydrome. Buried bumper syndrome (BBS) is one of the uncommon and late complications of percutaneous endoscopic gastrostomy (PEG) placement. It occurs when the internal bumper of the PEG tube erodes into the gastric wall and lodges itself between the gastric wall and skin. Ella also had nasty infection in the lining of her stomach and had also ripped her stoma. She had surgery and they thought they were able to salvage the stoma tract and replace the peg with a different tube. It was this moment that things hit the fan. Once again. Whatever Ella put in her mouth would come pouring out of her stoma. Everything. Even a sip of water. It was around this time we found out were having a baby boy! Then we found out we were having Such a ray of light in a dark season. Ella went through months of hospital trips and medical intervention. This included five replacement tubes to see if the tube was faulty and so many admissions I cannot even count. Then Covid hit (nothing like a pandemic to add to the chaos) Paddy was called to a different role in his job and life was crazy. In-between emergency hospital admissions with Ella, two other girls at home that still needed the love and support from Mummy and Daddy. Times were tough. Then we had our boy. Ezekiel. I cant even tell you. The joy and the hope we felt. Even though (like everyone else pregnant in covid) having a baby in the first set of lock downs was crazy. When we weren’t sure If gas and air was safe or if our partners could even be at births. A baby in a pandemic? (crazy right) We had A child who needed more than one parent at appointments and procedures, a newborn and two other kids and a husband who was working crazy hours? No words. Paddy then had to take Ella to hospital to have her tube removed so they could let her stoma heal and place one in her nose. (That she is still rocking) At 4 weeks old, Zeke was hospitalised with a peri anal Abscess and was taken to Royal Children’s Hospital for surgery. It was around this time that we noticed that our little prince was not acting the same as our other babies were at this age. He was having a lot of one-sided jitters and was always very, very unhappy. He was always screaming and not developing like we would have expected (and after three kids we knew kind of what we were looking at by this age) Zeke went through so many tests and scans (long story short. Some of it is too yuck for us to want to remember) MRI’s, lumbar punctures, bloods, ultrasounds you name it. It was 10pm one night and his numerologist came in and informed us that they were super concerned about Ezekiel. That he was showing some worrying neurological abnormalities. Our world was shaking. How could this be happening AGAIN. Why us? Once again, we were in the throws of having a baby who was not well. Fast forward to two months after and Our Z man was diagnosed with Cerebral Palsy, Dystonia, and Cerebral Irritation. The cause? We still to this day do not know and we are awaiting more genetic tests to see if we can find out. Zeke is still in and out of hospital regularly. He was recently diagnosed with Central Hyperventilation Syndrome and is now on oxygen and monitoring when he sleeps which is still a lot. He is the sweetest little dude and is making small gains now as he closes in on nine months old. He still cannot sit or roll and is only just starting to hold his head up (most of the time haha) He’s on a lot of different medications for his muscles, to help them relax and not be as tight but we are still trying to help him control his dystonic episodes, as they are super upsetting and can last hours until his body shuts off and he falls into an exhausted sleep. There is so much that I'm not saying but that's only because we are in a place where we are just coming to terms with everything still ourselves. As you can imagine. The stress on our family is something we could never express and something we pray that no one has to experience. However, from our heart to yours if you do find yourself in this place. I am sorry and I’m here. Reach out. There are many organisations, and people waiting to hold your hand and get down in this pit WITH you and help you see the light on the way out. This is a hard lonely place. Do not underestimate it. I am with you. This is our story.

WYNGATE CARE https://wyngatecare.com.au/ Wyngate Care specialises inproviding trained Support Staff for Disability and Aged Care Facilities as well as one on one care in client’s homes. KIDS ON THE SPECTRUM https://www.kidsonthespectrum.com.au/ We are an Australian Autism Directory managed by neurodiverse parents. We aim to list all businesses, products, services and events that are autism friendly. LOVE ME. LOVE YOU. https://www.lovemeloveyou.org.au/ Love Me Love You is a not for profit organisation providing interactive and engaging programs that challenge the views and stigmas surrounding mental health. HAPPINESS FIRST https://www.happinessfirst.com.au/ We provide reliable, honest, quality, skilled and complete services. Enabling you or your loved one to "Live Their Best Life". Click on our services to learn more, and keep in mind we can tailor all our services to met your specific needs. DEAF CHILDREN AUSTRALIA https://www.deafchildrenaustralia.org.au/ Supporting deaf and hard of hearing children, young people and their families. ONWARDS AND UPWARDS PSYCHOLOGY https://onwardsandupwardspsychology.com.au/ Our passion lies in supporting children and families to connect to, understand embrace their whole-heated and unique selves. THE COOL TO BE KIND PROJECT https://www.thecooltobekindproject.org Making the world a kinder place for all children to grow up in. SOURCE KIDS https://www.sourcekids.com.au/ Source Kids is Australia’s first magazine for parents and carers of children with a disability from birth to 25 years. We deliver relevant, reliable and positive information to help navigate our parenting paths. Empowering parents of children with additional needs across Australia!

Unfortunately today, I was privy to a Facebook live video by a kind-hearted, generous and kind-hearted woman who happens to be a top-earner in her company but more importantly, a daughter, sister, aunt, wife, mother and friend. During a Facebook live she was doing (she dedicates time to do this every day), a disgusting, sexual, crude and inappropriate attack on her character began. We watched Sarah being placed in an uncomfortable situation and although people tried to stop these sexually focused comments, they unfortunately derailed the value of what she was trying to originally convey in the post. What was said doesn’t matter but it does matter that there are men out there, with wives and children, who thought it clever to make derogatory comments against a woman who not only helps others in her business but uses her influence to open up orphanages and schools around the world. Sarah opens her arms to anyone who needs it and it was disgusting that this group decided to publicly humiliate and be vulgar. It's not on. Cyberbullies thrive on social media because the entire social network is interconnected, and there are opportunities to shame their victims in front of their social circles. Mean comments, making fun of the victim publicly on social media, gossiping, and even threatening through private messages are all ways social bullying occurs. In Sarah's situation, I hope there will be 'justice' for their actions. Their comments may have stopped at the end of the live video but Sarah’s resolve did not. Hours were spent locating, deleting comments and blocking as many of the perpetrators as she could. She contacted Facebook to report the group and conducted another live video asking people to help. Sarah showed strength but it was obvious how rattled and understandably scared she was. This situation also showed how kind people, whether they knew Sarah or not, were supportive, sharing, commenting, reaching out to any contacts who worked at Facebook and sending messages of support. I recently saw a further case of cyber-bullying when watching a live by makeup expert Tasha Caroline. Before doing her makeup, Tasha gives herself a mono brow (which has been nicknamed 'unis' by her followers) purely because it helps with symmetry. The comments some people chose to add were way out of line but Tasha, ever the professional, takes each comment; she won’t block anyone and has the mindset that each comment means more followers for her. This attitude is so refreshing and it’s also amazing to see how others quickly band together to support Tasha. Adult cyber-bullying is no laughing matter. It seems every day we witness adult bullying online and off. We see blatant bullying behaviour from political candidates (especially in Australia the last few days), celebrities, respected online public figures and ordinary people who become victims of cyberbullying simply from sharing their content online. As we become more and more dependent on technology and the internet, incidents of cyber-bullying, online harassment and abuse are continuing to increase. Although most cases that we hear about in the media are tragedies involving teenagers – it has become as much of a problem for adults, as it is for children. In fact, adults can be far more adept at hiding their online identity – and far more malicious and sophisticated in the way they use technology to harm others. The real life impact of an internet based, adult hate campaign can be devastating – cyber-bullying, reputation attacks and harassment online have all seen lives lost, careers and businesses damaged, social and professional reputations destroyed, and entire families broken beyond repair. Pew Research conducted a study in 2014, finding that 73% of adults have witnessed online abuse and 40% have been victims of it. Bullying hurts no matter what your age and left unchecked, can affect you (and your family) mentally, emotionally, and physically for a very long time. Sue Scheff is a cyber-bullying survivor and author, who simply asks “how can we possibly rationalise this behaviour in adults? It’s indisputable that grown-ups should know better, and the fact that they continue to harass is despicable. And today, bullying often happens online, which creates a long-lasting emotional sting.” Sadly, online bullying is not going away. We each need to be vigilant and address online harassment like it is happening in the “real world.” Abuse is abuse. Online spaces are created, shaped and used by real humans, with real bodies and real feelings. Harassment in online spaces is just as real and harmful as when it happens on the street, in schools and in workplaces. Targets of online abuse suffer emotionally, psychologically, economically and professionally. I know it’s easy to say, but don’t give these individuals power. They may not stop but they may tire of targeting. Facebook’s attempt to battle the problem of online abuse by putting the burden on users suggests the company may feel relatively helpless to act on its own. Governments and society as a whole must step up to figure out how to better protect members of communities, both online and offline, from harassment and abuse. Kindness counts. Keep your conversations constructive. Always find the positive even in negative situations. Make it a habit to find a smile each day. Speak up. Ask for help. Why? Because harassment in whatever form is not on.

Christmas. Summer holidays. It's the season for social media posts about gratitude and random acts of kindness. In some ways, I love these posts and support people slowing down and appreciating the little (and not so little) things in life. Kindness is always a good thing. If you have the opportunity to make someone smile, you should definitely take it. What I worry about, however, are the messages we send our kids when we push gratitude and kindness for nearly two months and then go back to business as usual. The truth is, gratitude is best taught throughout the year. Children should learn to slow down and appreciate the little things throughout the year as well. It's better to engage in deliberate acts of kindness every day. Kindness is a choice we make, and children should learn from a young age that by putting kindness into the world, they have the power to make the world a better place. You don’t have to hand out gift cards to strangers to practice kindness. Big gestures are nice, but often the small gestures hold more meaning. For children to truly grasp the power of kindness, it helps if they see the direct impact their acts of kindness generate. With that in mind, as Australian children return to school for the 2020 year, I suggest encouraging them to practice small and deliberate acts of kindness through the year. 1. Hold The Door - Teach your children to hold the door open for others when out and about. This small act of kindness will keep children connected and encourages them to communicate with people face-to-face. 2. Read To Someone - A great way to help kids connect with others is to encourage them to read out loud. Reading brings people together. Whether your child reads to a younger sibling or shares a favorite book with an aunt or uncle, reading to someone else shows that person that you want to connect and share your world. 3. Support A Friend - Children are busy. With the number of extra-curricular activities, they often forget to consider what their friends are doing. Take your child to one of their friend's sporting events and encourage them to cheer and get involved. By cheering each other on, children will strengthen their friendships. 4. Let Someone Go Ahead In A Line - Children get competitive when lining up (so do adults come to think of it!) Teach your children to let a classmate go in front of them. Letting someone else go ahead shows that we’re all in it together and that we think of others. 5. Include Someone At Recess / Lunch - Inviting someone new to sit or play with you can really change not only a child's day but their life. Many children say break times, especially lunch, is the most worrying part of their day in case they are not able to find a welcoming table. If each child invites one new person each, watch the kindness spread through the canteen. 6. Write The Teacher A Thank You Note - Before Christmas, teachers' are overwhelmed with gifts and thank you presents, but having your child write short notes shows the teacher they are appreciated. Encourage this behaviour helps your child connect with their teacher, too. 7. Write A Handwritten Letter - Children love to give and receive mail and receiving a handwritten note to say "hello" or "I'm thinking of you" makes anyone feel appreciated! 8. Help Someone Else - Children love to help others so encourage your children to ask a neighbour if they may be struggling with their shopping, for example. They are capable of getting in there and carry a bag or two to lighten someone's load. 9. Make Treats for Others - Children love to bake and make things in the kitchen. Baking something yummy is a great way to show kindness so fire up that oven and let the creating begin! 10. Teach Children To Give and Receive Compliments - Sometimes a compliment at the right moment can really brighten someone’s day. Talk to your kids about compliments that uplift others (e.g., "I really liked that story you shared in class today."), and encourage them to use compliments often. When kids see that acts of kindness are uplifting for others, they are more likely to engage in kind acts regularly. Skip the random acts this year, and focus on daily acts of kindness throughout the year.

They may sit alone They may feel sad They may get anxious They may get mad. They may not be popular They may not interact They may get jealous They may feel trapped. They have love to give They have skills to share They have ideas to grow They need you to care. Every day should be awareness day And we always do this thing Where we see the able, not the label And the wonder so many bring.