The Grand Finale

The Universe

Just over a month ago, I was entrusted with the most beautiful gifts – precious gems in the shape of stories from around the Down syndrome community.

Thank you Leticia, Jocelyn, Belinda, Kylie, Joelle, Peggy, Elisa, Lucy, Karlea, Ben, Sharnie, Rebecca, Lisa, Kerry, Diane and Kat for entrusting me with your words and photographs, and allowing me to share a piece of your heart in this space. It has been an honour. Thank you for being courageous enough to be vulnerable, for sharing your story with your whole heart.

And thank you to everyone who held out your hands to receive these precious stories in October, who soaked in these words and images and felt them in your heart.

As we conclude with the 31st of 31 posts in October today, I want to set you a challenge. Go back over the month of posts (there’s a list below with links) and choose one of your favourites, then do one of two things. Either write a comment below the post for the writer to find, or send that story out into the Universe by sharing it on social media (or perhaps simply send a link via an email to a friend). When you are writing the comment or sharing it with your friends, tell them what you learned from what you read, how it changed you or what it meant to you. If you have already written a comment or shared a story, thank you.

Leticia ~ Why Bother with Awareness

Jocelyn ~ Choosing Family: a mother’s reflection on having more children after her first baby was born with Down syndrome

Belinda ~ the Monday Meditation series: week 1, week 2, week 3 and week 4

Kylie ~ Country Parenting a Child with Down syndrome

Joelle ~ No Prenatal Diagnosis Can Predict This Kind of Happiness

Peggy ~ Advocating for Your Child in Hospital

Elisa ~ Lessons from Reuben: what my son has taught me about life, Down syndrome and myself

Karlea ~ Jahkai’s Rainbow {wordless Wednesday}

Lucy ~ Emily and Me: growing up with a sister who has Down syndrome

Ben ~ The View from Here: a Dad’s perspective on receiving a prenatal Down syndrome diagnosis

SharnieOsteopathic Treatment and Management of Children with Down syndrome

Rebecca ~ Ryan’s Surprises

Lisa ~ The Virtue of Stubborn

Kerry ~ Becoming a Forever Mum: loving my foster daughter with Down syndrome

Diane ~ A Tribute to Our Angel named Blake

Kat ~ What a Child with Down Syndrome Might Do

Annie ~ Apples and Oranges: comparing Leukaemia and Down syndrome

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Two and a half.

Thank you for sharing in this storytelling journey through October, and for all you have taught me along the way. As is often the way, I have received far more than I could have imagined through being open to the magic and lessons of the stories shared.

~ Annie x

Have the courage to be imperfect, tell the story of who you are with your whole heart. Be willing to let go of who you think you should be in order to be who you are. Vulnerability is the core of shame and fear and our struggle for worthiness, but it appears that it’s also the birthplace of joy, of creativity, of belonging, of love. What makes you vulnerable makes you beautiful.

~ Brene Brown

 

 

 

 

 

 

 

 

 

 

 

What a Child with Down Syndrome Might Do {guest post}

It seems hard to believe that Kat has been on the ‘Down syndrome scene’ for less than two years, with all she has achieved and all the people she has connected in that short time, whilst also holding down a full time job and being a single mum to two children. I am thankful to know this woman, filled with such passion and dedication and spunk. Thank you, Kat, for all you do and for sharing the Parker love here today. ~ Annie x

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There are no guarantees in life. Having a great love, following a true passion, having a child.. it’s all a gamble. You won’t always take the most worn and travelled path as you create your own life story.. and that’s okay. My son Parker has Down syndrome, and is two years old. In his short life, he has inspired many people to do many things, and created some beautiful memories for our whole family. It can be a scary place, the first moments (and days and years) after your child receives a diagnosis of any sort. I can’t tell you it will be easy. And I can’t gloss over the medical issues that can come with a child with additional needs – after all, he was on oxygen until he was a toddler and am grateful to no longer need it. But maybe I can show you a little of what else you have in store… the potential of what COULD be. Here’s what your child MIGHT do. He might show you how to stop and smell the flowers. Flowers He might breastfeed until he is 16 months old. Breastfeed He might become a model for a children’s boutique. Model He might go through your tissues like crazy. Tissues He might be rather bossy about telling you when he wants his nappy changed. Nappies He might become best friends with Geoff the oxygen delivery man, the mail man, the fruit box guy, the ambulance officers, the neighbours, or anyone else who chooses to regularly visit him and enjoys cuddles and an occasional poke in the face. Deliveryguy Your child might inspire someone to run a marathon just for him, on the other side of the world in America. RunforUS Or even in Europe. RunforEurope He might be the best thing that ever happened to his big sister or brother. “Mum, if I didn’t have Parker, I just.. I don’t even.” Sister You might find him hanging out on inner city store windows. Citywindows It might freak him out though. Freakout He might inspire 50 people to jump in a mug and snap a photo, to raise awareness for a Down syndrome morning tea day. Teacup He might get stuck into the presents BEFORE Christmas morning. christmas Your child might instantly make people feel a little better when they need it, just by being himself. feelbetter He might be really good at yoga. yoga He might go to daycare fulltime, and enjoy every second of it. daycare Your child might really really really love Taco Tuesday. taco Or he might be a spaghetti monster. spaghetti Your child might rather enjoy the odd picture being taken of himself and say ‘cheese’ a lot

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Your child might wow the therapists and sometimes just do his own thing. Instead of adhering to low expectations, he might set his OWN pace through life, like every other child. 9mos Your child might wake in the morning, and reach for you. And while you lay there wearing the most precious of jewels around your neck, his small chubby arms, you might decide this child is the best thing that ever happened to you. final Kat is a single mumma of two, a public servant, a passionate advocate in the disabilities community, and writes a blog to educate on what life is like raising her son Parker, who has Down syndrome. You can read articles by Kat on Mamamia, or follow Parker and Kat over at her blog, or in their Facebook community, Parker’s Place.

Tribute to Our Angel named Blake {guest post}

I feel as though this amazing woman needs no introduction… but, I will anyway. In the days after Sam was diagnosed with Leukaemia, Diane was sending me messages of support – in the midst of her own pain, in a matter of days before she would lose her only son, Blake. This is just one example of the sheer expanse of her generous heart. Despite their immense grief, Diane and her husband Paull continue to be an amazing support to so many people and live out Blake’s legacy of love. Thank you so much, Diane, for sharing your beautiful boy with us here. ~ Annie x

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Wow, what a privilege to be asked to contribute to this amazing month of writing for Down Syndrome Awareness. I’ve pondered over which topic I would write about… oh yes, I have many floating around in my head! But I’m a little bit different to most of the parents who write about their gorgeous children with Down syndrome, because I am the mum of an angel – an angel named Blake.

It has been just over a year since our gorgeous little boy lay in our arms and grew his wings, on Friday 13 September 2013. He was 19 months and 9 days old, and my only child (although my husband has children from his previous marriage). So Blake was my world, our pride and joy, our present and our future. He was our little boy who happened to have an extra chromosome and was diagnosed at birth with Down syndrome. But to all who knew him, he was simply Blake.

IMG_3903IMG_2746Quite honestly, I could fill in the whole month speaking about Blake. I would tell you of all his gorgeous antics, such as his two handed wave, the way he blew kisses and said “mwah” as he kissed the back of his hand instead of his palm. I could tell you how, if he was sitting, he would grab both our hands and rock backwards and forwards, giggling, so we would sing “row, row, row your boat” over and over again. Blake would engage people and always look them straight in the eye and, when he knew he had their full attention, he would reward them with a full body smile.

If we had the time, I would share with you how much Blake loved to play boo, and how he had favourite toys, such as his big eyed “jarf” and soft bellied doggy dog. He loved to knock his wooden blocks over, loved to turn the pages of his books and knew to open his cards and look inside. He would push the buttons on his toys to make music and dance to it as it played, and he knew to push the button three times in a row to make the alphabet song play again so we would sing along. Blake loved to roll around and play on the floor with his toys and look at himself in the mirror…oh, and do selfies on my phone!IMG_4851 IMG_7942

I could tell you how Blake got all excited whenever his daddy came home from work or walked into the room, but how he would push daddy’s big head out of the way to see Giggle and Hoot on television. I would tell you how he loved to go for rides in the car, how he liked to pat our goats, and how he held a tiny chicken and gently held an egg without dropping it. I would share how delighted Blake was in his swing – the higher the better – and how he loved balloons, pulling on the string and tapping them gently.IMG_0947 IMG_0010

I could tell you how Blake loved food, gobbling up his fruit and our home grown vegetables. How he really loved to have a bath and just how much he would laugh when he sloshed the water to drench me.

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IMG_1595I could tell you of Blake’s whole body smile, his beautiful big blue eyes, his wayward blonde hair and how tall he was for his age. I could tell you that he had big feet, beautiful soft skin and razor sharp teeth when they first came through. I could tell you of his gorgeous contagious giggle that made his whole body move, of his captivating smile and of his absolutely amazing easygoing and cheeky nature. I could tell you how he gave beautiful kisses and cuddles, and how he fell asleep in my arms every night.

These are the memories we cling to now that we can no longer hold our beloved, beautiful Blake in our arms.

Yes, I could go on forever and, in fact, I will… but, for your sake, just not all on this page.

We are the parents of an angel – an angel named Blake, an angel that happened to have Down syndrome. Would we willingly go down the path of having a child with Down syndrome again? In an instant, without a moment’s hesitation.

Diane and her husband Paull live in country Victoria. Diane moved from Northern NSW to marry Paull and soon they welcomed their beautiful son, Blake.  While Paull has now gone back to working in earthmoving, Diane is still finding her feet after losing Blake and is trying her hand at making goodies, primarily for children. Her little enterprise is aptly named ‘Jarf and Friends‘ in Blake’s memory. Together, Diane and Paull’s main aim is to continue Blake’s legacy and honour him through promoting positive awareness of Down Syndrome and childhood heart disease. You can learn more about Blake on his Facebook page, Blake’s Million Smiles.

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Ways to Incorporate Mindfulness into Busy Lives {monday meditation}

Thank so much to the lovely Belinda for being with us in October and for her practical advice on helping us find solace and serenity in amidst our busy lives. This is the last post in our ‘Monday Meditation’ series in October. If you’ve missed our previous editions, you can find Belinda’s first post here, second post here and third post here. ~ Annie x

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Mindfulness has become a bit of a buzz word in recent years, however unlike a lot of hyped fads it really does work, providing a strategy to help us live in the present moment, even if it that present moment is a bit shitty (and haven’t we all been there).

According to the ever-faithful Wikipedia, mindfulness is “the intentional, accepting and non-judgmental focus of one’s attention on the emotions, thoughts and sensations occurring in the present moment”.

In practise it’s not always easy to be so accepting and non-judgemental of ourselves or of uncomfortable situations, but with practise it’s possible to become more mindful of our thoughts without getting attached to negative thinking or letting our minds get carried away in future planning and other thoughts like the endless ‘to do’ list.

Think about a moment where you’ve felt stressed and under pressure. Chances are that your brain chatter started to tell a story of its own based on the uncomfortable feelings and emotions you were experiencing. Mindfulness is a skill that allows you to focus on the present moment without judgement, which is especially powerful when going through hard times or even just long days at home with the kids.

If you spend a lot of your time looking after small children like me, there’s an endless opportunity to practice your mindfulness skills.

A first step is to go for a walk with them and devote all your energy and focus not on just getting to the destination but in taking in the journey itself. Small children are naturals at the mindfulness game – so take their lead and you’ll be amazed at what you will see and feel. Stop when they notice small things on their path, dawdle alongside and look for birds in the trees and the wind blowing leaves across the path. Not an activity to try when you’re rushing to do the kindy or school drop off and get to work, but after giving this a go you might find yourself leaving that little bit earlier just so you can savour the moment.

A trick for when you feel frustrations rising to the surface is to pinpoint the emotion you are feeling and why you are feeling it. Sometimes we can experience emotions without really tapping into what’s causing them. Are we doing too much? Do we need to slow down or do we just need to attend to that nagging task we have been putting off? Is the real reason that our childrens’ nagging is getting to us today is that we haven’t rested or nourished ourselves enough? Sitting with our emotions can be tough but once you’ve mastered it you’ve got your own personal reboot button to help you get through tough days.

Another great way mindfulness can help us as mothers is that it can bring a meditative quality to tasks that have to get done that we may not really enjoy. Washing pile anyone? Mindfulness prescribes taking in all the sensations of the most mundane of tasks, so when washing up pay attention to the warmth of the water, the light caress of the bubbles and focus your attention to cleaning each plate and moving it to the rack. You’ll be surprised at how relaxing these tasks can be when you focus on small things – the sensations, your breath and small movements. Higher degree of difficulty with a nagging child tugging on your leg! Not sure the most zen could even manage that, but it’s all about small mindful steps everyday.

As much as sitting and dedicating some quiet time for ourselves should be a priority for mothers, it’s not always going to happen everyday so injecting some mindfulness techniques into everyday living can be bring about noticeable changes in our mood and coping skills.

I’d love to hear from you if you’ve tried some of these techniques and how they work out for you. I’ve really enjoyed being here for the past month, bringing you my little Monday meditations. Thanks again to the lovely Annie for having me. I’d love if you popped over to the blog, or joined me on facebook, twitter or instagram to say hello sometime.

Belinda is a journalist, yoga-addict and mother to two boys, always searching for ways to live a purposeful and stress-free life. Join her over at her blog Save Mum’s Sanity in celebrating the perfectly imperfect journey of motherhood.

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52-43-2charlie: You have a new-found love of swimming lessons, which makes me very happy as we no longer seem to have to fight each week to get you into the pool. You are so inspired, it turns out, that you even loving swimming in the bath at the moment, complete with goggles. Pity it ends with SO much water on the bathroom floor, but I am loving the enthusiasm. 

52-43-3sam: My sweet boy returned on Tuesday afternoon, as the steroids subsided. We enjoyed having our Sam back, watching you being happy about going to school again, and being super helpful, offering to clear the dishes after dinner and setting out clothes in the morning for each of us to wear for the day. 

52-43-1nicholas: How lovely to see this beautiful face greeting me as I look out the back window. You are happy to play outside independently, but will always manage to find your way back inside to us when you’re ready. We witnessed you taking your first independent steps this week – just a few tiny steps, but a vision of new things to come. Not that you ever let your not-walking status stop you doing anything ;)

Joining in the 52 Project at Practising Simplicity ~ a portrait of each of my boys every week in 2014.

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Becoming a Forever Mum: loving my foster daughter with Down syndrome {guest post}

While Kerry and I have never met in person, her love for the very gorgeous Sienna was obvious from the very first time I ‘met’ her in the online forums. We may all ‘choose’ our child with Down syndrome in some way, but Kerry and Sienna’s story  of becoming a family is an extra special and unique one. Thank you, Kerry, for sharing your love story with us here today. ~ Annie x

Sienna2My journey into being the mother of a child with Down syndrome started somewhat differently. Sienna was born to caring parents, but parents who were overwhelmed with the thought of raising a child with a disability. They wanted the best for her, and didn’t think they could offer it, so they put her into foster care so that they could maintain contact, and were part of the process that looked at where she would be finally placed.

I had never had children of my own but have been a teacher of children with moderate and severe intellectual disabilities for many years. When I found out about this gorgeous little girl, I started the process of becoming her forever mum.

I first met my baby girl when she was nine months old. She was an adorable, chubby baby with beautiful blue eyes and blonde hair. The people she had been placed with loved her dearly, but having a baby at this point in their life was not what they envisaged. I started to get to know Sienna and all that entailed. At this stage she was still being fed via a nasal tube and was not eating anything due to an oral aversion. Even with the tube permanently attached to her face, she was still beautiful! It didn’t take us long to fall in love with each other. Five days after her first birthday Sienna came home.

Having a baby, especially one that was tube fed, was certainly a new experience for me. When I first thought of taking on Sienna, I felt that my previous experience with children with disabilities would make it a little easier for me. Silly me!!! Having a child for six hours per day on five days a week for 41 weeks a year was easy. This was a new 24/7 job, and it was hard! But it was also oh so rewarding. As I stumbled along trying to quickly learn what was best for her, Sienna blossomed.

At 16 months Sienna and I drove to the Mater Hospital where she had a gastrostomy tube placed in her stomach to replace the horrid nasal tube. Although it was a fairly difficult few days for both of us, once we came home and Sienna got used to the tube in her tummy, she LOVED not having a tube attached to her face. What freedom!! And how people stared – not in a bad way, but because they could finally see this beautiful face in full. Our next step was to begin to wean her off the tube. Now that she no longer had something tickling the back of her throat she felt the joy of food. Sienna began to eat! To make her hungry, without compromising her development, it was decided by her paediatrician that we would only do night time feeds, slowly decreasing the amount as she ate more. This way she got hungry during the day, and her skills at eating increased dramatically. Six months later, she no longer needed night time formula feeds. However, it took another six months before she was independently drinking enough for the tube to be removed. We celebrated!

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Sienna meets Elmo in Times Square, New York

In May last year, Sienna and I went to New York with my family for my nephew’s wedding. Sienna had been asked to be a flower girl. Even though she couldn’t walk independently, she still walked down the aisle flanked by a groom and bridesmaid. She was the most beautiful flower girl ever, and there were a lot of oohs and aahs as she made her way down, with a huge smile on her face. To me, this showed the level of acceptance that Sienna has received by my immediate family. As far as they are concerned, she is my daughter and they treat her as such. This little girl has found a home, and family that love her so much. Not long after returning from New York Sienna started walking, and life got more interesting.

Sienna has now been with me for two and a half years. She has regular contact with her birth family, including her biological mum and dad, and their extended families. I think family is very important and so I try to facilitate contact as much as possible.

Even though I am not her birth mother, I am very much her mum. I can’t imagine loving a child more than I do Sienna. She has become my world – and I have become hers.

Kerry is a single mum to Sienna and they live in northern NSW. Kerry has degrees in Primary School Teaching and Special Education, and currently works part-time teaching a support class at a local public school while Sienna attends a family daycare. In their days off together, Kerry and Sienna enjoy going to Mainly Music, Kindergym and swimming lessons. Life is busy – but fun!

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