Kicking Off 31 for 21 {Down syndrome awareness month}

DSC_1515I didn’t ask to have a child with Down syndrome. Having a child with Down syndrome is not something I ever thought I wanted.

But I was given the gift of Nicholas, and he was all I ever wanted. He is more than I could have imagined. He is perfect, 47 chromosomes and all.

In the midst of grief after receiving a Trisomy 21 (Down syndrome) diagnosis for my child, it was hard to contemplate ever wanting to be an advocate for Down syndrome. But as parents I think we automatically become advocates when our child is born. Throughout history, parents have been advocating for a better world for their children, whether they arrive with a diagnosis or not. We all want our children to be loved and valued for who they are, to be seen in all their awesomeness – the way we see them.

Throughout history, parents have been challenging the ‘but-that’s-how-we’ve-always-done-it’ mindset to make a better world and better life for their children. When many children with Down syndrome were sent to institutions, there were parents who chose to take those babies home and love them. When medical professionals have passed off significant health concerns as being ‘just because of Down syndrome’, parents have decided to find a better way and watched their children grow and thrive. Parents challenge the status quo every day.

I am thankful for the pioneer parents who have come before us, who have chosen to love and advocate for their child with Down syndrome. These days, through the power of the internet and social media, we have such an incredible Down syndrome community around the globe. Every day, I have access to more resources, hear about health advances, and share in the joys, challenges and achievements of people with Down syndrome. No longer is our information regarding Trisomy 21 limited to one outdated book in the local library.

Sadly, while as parents we are watching incredible changes in the world of Down syndrome, there are still many outdated and incorrect stereotypes alive and well. The alarmingly high termination rate following a prenatal diagnosis of Trisomy 21 is just one indication of how dangerous these outdated views can be. However we choose to advocate, it’s important for us to share what life with Down syndrome is really like.

October is Down syndrome awareness month. For the past couple of years, I have contemplated doing the ’31 for 21’ blogging challenge and doing a blog post on each day of October. And each year I realize that committing to such a challenge is going to end in either divorce or insanity ;) But this year, with a little (okay, a lot) of help from my friends, (and a lot of understanding on the part of my husband), it’s going to happen, and I’d love you to be a part of it.

One of the biggest gifts that Nicholas and Down syndrome have brought to my life is the network of amazing families – locally, nationally and throughout the world. Over the course of October, I am honoured to be able to introduce some of our Australian friends to you and share their stories of life with Down syndrome – stories of rural life, of sisterhood and a wedding, stories of hospital adventures, coming of age and prenatal diagnosis, stories of loss and of love. There will also be a Monday meditation from Belinda over at Save Mum’s Sanity, plus the usual 52 Project and other posts and photos from me. Come and celebrate all kinds of awesome with us in October.

If you’d like to receive blog posts straight into your inbox, put your email address into the box above. We’ll also be hanging out over on the Mummalove Facebook page and on Instagram. We’ll be everywhere. For a whole 31 days ;) Can’t wait to share it with you x

DS_Oct14_PCYou are very welcome to share the above image to celebrate Down syndrome awareness month. You can also find it on our Facebook page.

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39/52

52-39-6First week of school holidays completed and I managed to not overplan it and exhaust myself. I’m calling that a win.

October is Down syndrome awareness month and I am oh so excited to be sharing some beautiful stories, interesting information and so much love with you over the next month. I can’t wait for it all to begin on Wednesday. Watch this space.

52-39-1charlie: Charlie Love, you are king of the funny faces, the crazy stories, the uninhibited imagination. Between a creative workshop and a visit to Brisbane’s most interesting park (well, in our opinion anyway), you have loved letting your imagination run wild over the school holidays.

52-39-2nicholas: Having climbed up into the sand trough, you were mesmerised by the kids playing nearby. I carefully watched you in case you wanted to get down again, but of course as soon as I was distracted by another brother, you managed to do it all by yourself. Just like your medium sized brother, you happily entertain yourself and played for ages in the sand and water. Lucky Mum brought a change of clothes to the park. 

52-39-3sam: I wonder if it will ever get too hot for the jeans and long sleeved shirts that you seem to live in at the moment. I did giggle when, on suggesting you put on shorts the other day, you advised me that you needed to wear something “fancy” to the movies ;) You have enjoyed playing with new friends and old this week, exploring new parks, seeing a movie, and even learning sign language at a sibling workshop. You don’t like sitting still for too long, but you have coped okay with some home time this week too.

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

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One Year On {our journey with Leukaemia}

August 2013, one month before diagnosis

August 2013, less than one month before diagnosis

I’m not sure what I remember most about 9 September 2013, on the fateful day we received Sam’s Leukaemia diagnosis. Perhaps the voice of the doctor who first gave me the news over the phone, or how my own voice cracked when I called Ben and told him to come straight home. I am sure I have aged ten years in the past 12 months and it probably goes without saying that there have been moments I’d rather forget, but I am grateful for the perspective that time has given us and, most especially, for the healthy, happy six year old with us today.

We haven’t spent any time rehashing memories from the time after the diagnosis. Some of those moments will be etched into my brain forever, and some have been forgotten in the blur of emotion of those first few weeks. I suspect the blur is a coping mechanism, so we could manage to get through each day of that traumatic time, focussed only on the most important things. I remember feeling like I was in a fog, that I couldn’t possibly think about anything other than managing the logistics of where and with whom each of my children would be every day while Sam while was in hospital. I’m pretty sure I needed to remind myself to eat, and to breathe on occasion. My mantra was ‘be brave, show up’, and I listened to this song on repeat. When it wasn’t playing on my phone, it was ringing through my head.

October 2013

October 2013

The images in this blog post are in chronological order, starting just before Sam’s diagnosis until last week (I’ve inserted a slideshow of the same images at the end, so you can watch in progression). It appears we didn’t take any photos with the DSLR camera between early September until the end of October, although I know there were iPhone photos taken in that time. From the changes in his face, body shape and hair, it’s hard to believe that one child can look so different from one month to the next.

In that first month, ravaged physically and emotionally by the drugs coursing through his body, I remember wondering whether he would ever seem like my Sam again.

November 2013

November 2013

The first month of intensive treatment after diagnosis finished with Sam officially being in remission, meaning there were no Leukaemia cells detected in his bone marrow and that from that point he could follow the ‘standard risk’ treatment protocol for the next seven months.

Among other things, life with Leukaemia has been erratic. We received our general ‘roadmap’ for each block of chemo in advance, but the next appointment is only booked as the last appointment ends and things can change based on factors such as blood counts. Some weeks we’d have an appointment on a Tuesday, the next it would be a different day or not at all. Sometimes we’d have very early starts and Sam would need to fast for a procedure, other days it was a ‘short’ visit. In any case we’d rarely be out of the Oncology department in less than two or three hours. There were some harrowing appointments, moments and procedures, and some less confronting, but none we ever imagined that we would have to see our son go through.

January 2014

January 2014

Sam finished up his eight months of intensive chemotherapy and began the ‘Maintenance’ phase of treatment on 29 May 2014. This means that life is now somewhat more regular in terms of scheduled medical procedures. His hospital appointments have dropped back to one per month, for a chemotherapy drug to be given through IV, and every three months for intrathecal (through the spine) chemotherapy via a lumbar puncture under general anaesthetic. Sam now takes medication daily at home. We have a pretty calendar to help us keep track of which drugs to take on which days, but it’s amazing how quickly you become an expert on administering medication and, thankfully, he’s pretty good at taking them too.

He still has fairly regular blood tests, to keep an eye on how various factors are reacting to the medications, which is either done through a finger prick or through his port-a-cath, which was surgically inserted in his chest soon after diagnosis. This Maintenance phase will last another two years and take us through until Sam completes his treatment for ALL in November 2016, when he is eight and a half (he was five at diagnosis). It’s a marathon, not a sprint.

Thankfully, Sam has remained quite well over the past year and has only required a handful of overnight stays in hospital. We’re frequent fliers in the Emergency Department, where he needs to be admitted if he ever has a fever over 38 degrees Celsius. If this happens we go into action mode to juggle three children and two parents across two locations for as long as required. After the initial diagnosis admission of two weeks, I think our longest stint so far has been a week, so a pretty good record, all in all.

February 2014

February 2014, complete with wrapped up toe and moon boot post the famous Australia Day ’tile incident’

While I’ve no doubt that Sam has been irrevocably changed from his Leukaemia experiences, he remains a sweet and generous kid. He is generally happy, polite and talkative, loves to draw and craft, and is doing well at school. He has just started doing tennis lessons and is “a gun” (according to his coach) with his hand-eye coordination.

In fleeting moments, I wonder how much more sporty he might have been if the Leukaemia cells hadn’t eaten away at the bone in his knee or the steroids didn’t bulk up his weight, but it is what it is. All we can do is to lead by example and encourage him to stay active and eat well.

February 2014

February 2014, the day after his hair started falling out and we decided to shave the rest

It goes without saying that having a child diagnosed with Cancer is overall pretty crap, but I think the worst parts so far for me have been… watching my five year old endure far more than any five year old should ever have to; knowing that the most proven path to ensuring his survival is to pump his body full of toxic chemicals, but not know what the long term implications of that will be; the disruption to our family whenever Sam’s in hospital; and on a more day to day level, living with the stranger that inhibits Sam’s body when he takes steroid medication on five days of every 30 (it’s (really) not fun, and we do a happy dance when the last dose is given each month). We won’t even mention the more deep seated fears that we hide in the back of our minds and try not to give too much airspace to.

But we do what any parents in challenging circumstances do and we go on, and adjust to our ‘new normal’. And when we go on, when we try to stay focused on the love, we have seen many beautiful things evolve out of a Leukaemia diagnosis too.

Mid-February 2014

Mid-February 2014

There has been an outpouring of love and a strengthening of the safety net around us, as we have had to rely on those networks of family and friends to support us.

Mid-February 2014

Mid-February 2014

Amazing things have happened in our community. Students and leaders at Sam’s school gathered raffle prizes, raised money and shaved their heads to collectively raise over $7000 for the Leukaemia Foundation. We put out a call to join us for a fun run in support of the Cure Cancer Foundation and had 72 people join us in ‘Team Love’ to raise nearly $8000. We have witnessed our son initiate ‘SuperSam’s Surprise Box’ to help keep the basket of small incentive gifts in the Oncology department stocked for the children undergoing procedures, and we’ve watched our kindergarten and school communities quickly run with that idea and deliver many bags of gifts to the hospital.

March 2014, Practising spray painting our heads before Crazy Hair Day at school

March 2014, Practising spray painting our heads before Crazy Hair Day at school. A definite fuzz reappearing on his head now.

We have been embraced by some wonderful organisations, especially Camp Quality and the Leukaemia Foundation of Queensland, and been assisted on financial, practical and emotional levels by their wonderful teams. The boys have had some super fun days with CQ in what has been a tumultuous time in their lives. We know there are many wonderful charities and support organisations helping many families in similar circumstances every day.

March 2014, all set for Crazy Hair Day

March 2014, all set for Crazy Hair Day

We have been so grateful for the amazingly clever, incredibly dedicated, friendly and caring medical professionals who look after Sam. Words cannot express how indebted we are for their ongoing management of Sam’s treatment and the care they show to all the Oncology families day in and day out.

April 2014, at Noosa on our first Camp Quality Family Camp

April 2014, at Noosa on our first Camp Quality Family Camp

We have slowed down, we have taken the opportunity to focus on what’s important and have learned how to say no to the things that aren’t.

April 2014, treatment day

April 2014, treatment day at the hospital

Our eyes have been opened to the hardships people endure and just how lucky we are, and we are more thankful than ever for each and every blessing in our lives.

May 2014, ready for a friend's birthday party

May 2014, ready for a friend’s birthday party

September is International Childhood Cancer awareness month. I’m pretty sure that Acute Lymphoblastic Leukaemia is considered to be one of the ‘good’ Cancers, if such a thing exists. I’m pretty sure that, in the grand scheme of all things Cancer related, we’ve had a fairly fortuitous run so far, touch wood. But, I’m also pretty sure that the world would be a much nicer place if no Cancer existed, and if five year olds could run and play and jump and didn’t have to worry about being hooked up to IV machines (ever) or having ports inserted into their chests.

So, as we approach the end of September, I invite you make a donation to a Cancer related charity of your choice, maybe on behalf of our Super Sam or someone close to your heart. Or do it for the kids who have lost their fight, and the families who are living without their beloved sons and daughters.

If you don’t know any particular charities, here are a few suggestions:
Leukaemia Foundation – http://www.lfq.org.au/get-involved/donate
Cure Cancer Australia – http://www.cure.org.au/you-can-help/ways-to-donate/
Childrens Cancer Institute – https://www.ccia.org.au/support-us/how-donate/

As it mentions on the CCIA website, we wholeheartedly agree that when three children die of Cancer each week in Australia alone, that is three children too many.

So please, go now, make a donation, however small, and help those researchers find a cure.

And thank you from the bottom of our hearts for being part of Team Love x

June 2014

June 2014

July 2014, after celebrating our school fete

July 2014, after celebrating our school fete (and, incidentally, during a course of steroids)

August 2014, our big school boy

August 2014, our big school boy

September 2014, with Mum at Grandpa's farm

September 2014, with Mum at Grandpa’s farm

September 2014, with Dad after the sports carnival

September 2014, with Dad after the sports carnival, on the last day of a steroid dose. Check out the hair now!

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Our SuperSam, late September 2014

If you’re new to Sam’s Leukaemia story, you can find the post on Sam’s diagnosis here and a follow up post here.

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38/52 {spring has sprung}

DSC_0803When 1 September rolled around, a warm day marked the change of seasons and the beginning of Spring. And then it went back to being chilly. Now that we’re half way through September, it appears that Spring has now well and truly sprung and we are enjoying the warm sunshine, cool breezes, grass under our toes and longer days where we can enjoy the outdoors into the early evening. Whether it be jumping on the trampoline, digging in the sandpit, a picnic afternoon tea, or craft under the tree, our backyard is our happy place.

This weekend marks the beginning of school holidays for us, which we need to savour as I know the last term is going to go by in a flash. Sam’s class is already starting to transition to new morning routines in preparation for going into Grade One next year. I’m trying to be slightly less gung-ho these holidays and not overplan, given I burnt myself out last break ;)

October is only about a week away and, as it’s Down syndrome Awareness Month, I have committed to blogging for 31 days (in the 31 for 21 blogging challenge). Eeek. However, in an effort to still have a husband by the end of it, I have enlisted the help of lovely friends who will be sharing their voices and stories and images along with me in this space. I’m really excited about sharing the love with you all in the month ahead so {stay tuned}.

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52-38-5sam: My biggest Love, we had a tough start to the week with those nasty steroids wreaking havoc with you. Thankfully, you were pretty excited about participating in your sports carnival mid-week and it was lovely to see your spark return on Wednesday morning as you got to don your yellow shirt, ready for races, ball games and other activities. Daddy and I were so proud of watching you put so much effort in at the carnival. You were also very excited about your ‘hobby day’ at school on Friday, which was a fun way to end the term and start the holidays.

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charlie: The arrival of some surprise presents from overseas mid-week led to hours of entertainment as you played with your new Transformers (thank you family!). You love playing outdoors in the afternoons and often it’s dark before you even think about coming inside. You weren’t very interested in going to bed that night, instead preferring to play with the beloved new Transformers, and later I found you sound asleep with one of the toys still firmly grasped in your hand. 

52-38-3nicholas: The trampoline is always the first place you want to visit when you get into the backyard. You frantically signing ‘jump’ and stand at the ladder until we lift you on, and then you very clearly communicate that you want us to come on and jump with you. I’m sure you would stay on there for hours on end if you could, loving to stand up and fall over, sit on us, “roll, roll, roll” and play with the ball. You very cleverly worked out the zips on the net pretty quickly, so you also love to let people on and off or just poke your head out and wave to everyone on occasion. I love your crazy trampoline hair.  

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

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37/52

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charlie: My cheeky Charlie chops, this cheesy photo makes me smile. In the process of taking photos, you also showed me your zombie face, and the face of “mens who have lots of keyrings” (I’m still wondering what you meant by that – one of life’s mysteries). You make me giggle often with the things you say, and I’m pretty sure I’m going to miss you a lot when you’re at school next year. 

52-37-4nicholas: We had such a lovely picnic afternoon tea outside, and this box has provided you and Charlie with hours of entertainment this week. The moving box that Grandma gave us has since transitioned from a cubby to a robot costume – so many uses for one cardboard box. So many cute moments with you this week, especially when you fell asleep on your lunch box while I was having an Osteo appointment. 

52-37-7sam: This week has marked a year since you were first diagnosed with Leukaemia. You still manage to endure treatment with a smiley face (helped, in this instance, by the Clown Doctors being silly behind you). One year down, two to go. We are so thankful you are looking so happy and healthy, despite our rollercoaster of a year.

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

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36/52 {happy father’s day}

0094-2When I think of my Dad, the first words that come to mind are steadfast, genuine, solid.

Growing up, I don’t remember my Dad being particularly playful. He was more inclined to teach me important things about the world, like how to calculate how soon we’d arrive in the next town based on speed and distance, or how to ride a bike. While we may not always have appreciated each lesson at the time, he was always there when we needed him.

Dad is always up for a chat, but he’s a quiet achiever, an introvert. He loves to learn, and has ingrained a love of learning in his children. Long ago, he taught himself how to play the clarinet and, at nearly 80, has recently taken up guitar lessons and spends a significant amount of time at the Genius Bar learning new tricks on his various Apple devices. He retired years ago, but never rests on his laurels.

My Dad is not one to worry too much about reading an instruction manual, but everything he builds is steadfast and solid too. I barely need to ask before he’s on the doorstep, ready to construct a set of bunk beds for the boys or install a new sink in the kitchen. Being a builder by trade, his children often benefit from his craftsmanship.

He’s not one for fanfare, but I have always felt the love and strength of my Dad, standing behind me in my finest hours and my darkest days.

Love you, Dad. Thank you for loving your tribe and sharing your infinite wisdom. Happy Father’s Day x

52-36-5sam: I love this photo of you and your beloved Daddy. My, how you showered him with gifts this Father’s Day. Aside from the school craft and Fathers Day Stall gifts, you spent hours working on a special book for Daddy to tell him all the things you love doing with him. 

52-36-4nicholas: Daddy and I love snuggles with our boys in the mornings, and you love being on our bed, even if you’d rather play than cuddle. You think it’s hilarious when you’re lying between us and we’re both looking at you. You give us a few cuddles, then spend the rest of the time giggling and rolling and climbing over the top of us. 

52-36-1charlie: Some days I look at you and think I’m definitely going to need a shotgun to keep the girls away in future ;) You have been asking so many insightful questions lately, reminding me how quickly you are growing up. You came into our bed early one morning this week, snuggled in to me and went back to sleep. I am treasuring each and every morning cuddle while they last.

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

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35/52 {grateful}

Grateful for tough conversations that break you open and make you better and stronger and more free.

Grateful for being able to celebrate a baby sister on the precipice of 30 and motherhood, and all that she brings to my life.

Grateful for some rare space with my husband.

Grateful for the power of music to transport me back in time.

Grateful for incredible women in my life and the gift of sharing stories.

Grateful for perspective.

Grateful for three noisy, chaotic, beautiful boys.

So grateful.

52-35-2nicholas: After a grey weekend, it was lovely to see the sunshine return and have more park plays this week. Just like your brothers, you generally like to start a visit to the park by eating. Your blue Tupperware lunchbox is your prized possession and God help anyone if they try to take it off you before every item has been consumed ;) After all the eating is finished, your favourite parts of playing at the park are filling your hat with bark and going down slippery slides.

52-35-4bwsam: I’m pretty sure my favourite bit of motherhood is watching the relationships develop between you and your two brothers. The bond between each of the boys is unique and has both strengths and weaknesses, but all in all, there’s a lot of love around here. You wanted me to capture a quick shot of you and Nicholas together before you went off to school and, judging by that face, I’m pretty sure your baby brother loves you to the moon and back.

52-35-7charlie: You have been a prolific writer and illustrator of books this week.- I think I lost count after about the ninth one. Most days begin and end with wanting me or Daddy to sit with you and write the words while you dictate the story, and then you finish each page with pictures, and at bedtime each night we read the books together. Being an author has taken priority over pretty much anything this week, even eating and sleeping. I love your stories, your imagination, your creativity, your passion.

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

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