Sweet Saraya – The Blog » A mum with a camera, keeping her loved ones in the frame.


I post too much.

I post too much, I share too much, I say too much, and I write TOO MUCH.

I get it. You’re sick of reading it. You’re sick of hearing it. You say my posts are OTT (over the top). I know you see my posts and you roll your eyes as you scroll by. I know you talk about me with mutual friends about how much I post, about how much I share. I know you judge me. I know you’re bored of me. I know you’re tired of me.

Hell, even I’M tired of ME!

You see, most days I have absolutely no adult conversation. None. I talk with my kids and they tell me about their day. But they are kids. There are things about adult conversation that I don’t get from my kids. I can’t really talk about my day, not that there’s much to tell anyway. Between them going to school and then coming home, I don’t talk to anyone. So I have all this crap going on in my life, and I have no one to talk to about it. Not even my husband. He and I have separate bedrooms, and separate TV rooms. And I can’t talk to him because a) he doesn’t listen, and b) he doesn’t care. Besides, the rugby/golf/league/soccer/darts/synchronised swimming is usually on.

So I post. I post because I am bored. I post because I am lonely. But mostly I post because I miss having someone to talk to.

Last week was World Duchenne Awareness Day. It followed on from the ten year anniversary of James’s diagnosis. It was a pretty tough week, as it always is. This time every year is tough. This time every year I post about how hard it is. And this time every year I receive zero calls asking if I’m okay. Oh, I get messages from some friends who know I’m finding it hard, those friends who worry about me. And their messages are always appreciated. Always. Thank you so much to those that messaged me this year. But there are people who see my posts, roll their eyes, and think “There she goes again, I wish she’d shut up!”

I wish I’d shut up. I wish I didn’t have this period in September that affected me so much. But it does. And I’m not going to apologise. I post because I WISH those close to me would care enough to pick up the phone or text me and actually ask if I’m okay, or let me know they are thinking about me. I wish they would do that, instead of talking about how I post way too much, and how OTT I am.

I’m OTT because I’m overwhelmed. I’m OTT because I have no one else to talk to. I’m OTT because I have to get it all out before I explode. I don’t need anyone to judge me, I need them to support me.

We spent 10 years overseas. I planned our wedding from Tokyo. All by myself. I went to all my prenatal appointments and had invasive testing. All by myself. I gave birth to four magnificent babies and learned how to be a mother. All by myself. I had four miscarriages. All by myself. I sat in a doctor’s office with my 2-year old son whilst a smiling doctor delivered him a death sentence. All by myself. Julian and I lived through the aftermath of that diagnosis. Together but alone. We have lost our home, our life has fallen apart, we have watched our beautiful boy deteriorate. And we have weathered it. Together but alone.

And so I post. Because I feel so alone.

I don’t have the luxury of family nearby, offering up their services to give us a break. I don’t have a shoulder to cry on, I don’t have a group of girls I can hang out with and bitch about the kids or my husband or life in general. I don’t have a group of friends who take me out to cheer me up. And that’s no one’s fault but my own.

And so I post. In the hope that someone will comment. In the hope that someone will say something to make me feel better. In the hope that I won’t feel so alone. In the hope that someone might even say “I know how you feel and I’m here for you”.

I post. And it’s my Facebook page. So please, instead of talking about me and judging me, instead of rolling your eyes and scrolling past, you might just take the time to ask if I’m okay.

Because most of the time, that’s all I need. To know I’m not alone in all of this.

  • Jeannette de Snaijer-Roos - Wow. I think you are very brave to write this all down. Because I think we all feel this, deep down inside, but we are too scared to let it out. Our son is 28 now, 21 years since we had the diagnosis. You know what it is: It takes too long. They all have seen it, done that, bla bla bla. He has been in the hospital, lots of times. They see you adjust your house for the 3 or 4th time, battling to get all the appliances you need for him. His 5th wheelchair…not interesting anymore. That’s the truth. People can only focus that long and that much (not long and not much) so it’s difficult. They don’t understand you can’t get out of your house because he has a trachea tube, and you need to be with him every minute. You are not free to go where you want/like. So I have given up, I have a lot of friends on facebook with DMD children. Some good friends still around, some familymembers. I just let it go….it’s not possible to live otherwise, it’s hard enough as it is. But you are brave, I must admit.ReplyCancel

  • Carly - Sharyn, I NEVER roll my eyes at any of your posts, and anyone who does should be damn well ashamed of themselves. Whether you post or not I think about you all every single day, literally every day. I’m not sure if I have said it to you before, but this atomic bomb of Duchenne that has dropped on you really has altered my outlook. I remember receiving that email you sent telling us of the diagnosis – I was sitting at work and just went cold. Then a year later when I became a mother to my own little boy it hit me again – what, just WHAT would I do if it was my son? I can only hope I would have the same strength and determination that you have to get me through the days, that love that just keeps you going because really you have no other choice. Every time something gets me down or I hear myself moaning I think of you and it is such a massive reminder to put things into perspective. I have hesitated in saying this to you as it sounds like I am making things about me – how thankful I am that MY boys are fine, how lucky I am that I don’t have to go through what YOU are. I truly hope that it doesn’t come across this way. What James and you all are going through (which I doubt I can even come close to imagining) has become my yardstick for what I judge the gravity of things on (please forgive the clumsiness of this, I’m finding it difficult to find the right words). Maybe it’s because you and Julian were the first friends my age who had become parents, and I was lucky enough to share some of those early joyous days of ecstatic parenthood with you, that it shook me so hard. I had never met two people so utterly smitten and devoted to their child as the both of you – none of my friends had become parents yet. Anyway, what I am trying to say (badly), is that you are NOT alone, you are loved and you are admired more than you will ever know. Your post has been a reminder that you are not telepathic, and that you need more than just a comment on your posts. Please know that you are constantly in my thoughts and I just wish I could change everything for you. Keep posting, let it all out if you can and if people don’t like it, they can scroll on, stroll on and do one!!! xxxxReplyCancel

  • Lis - You’re most certainly not alone in feeling as you do. Could’ve written that myself. XReplyCancel

  • Sascha - Oh Sharyn my heart breaks reading this.. I can’t imagine the pain. The constant grief. I don’t know the answer. I guess people go to Facebook to escape from their own shitty lives looking to escape from their own reality. Life isn’t all unicorns and rainbows and I bloody wish it was sometimes. All I can say is you have to start doing something for you.. a book club, dinner at a restaurant, organising coffee with a girlfriend. Just try and escape for an hour by doing something for you. I’m here for a chat whenever you need. You are a gorgeous girl… xxxxxReplyCancel

  • mindy b. - Sharyn, you have my love. I wish I could be closer – to be a shoulder you could cry on, to be a friendly ear to listen. I can promise you that I’ve never rolled my eyes. I have such respect for you, and I send my love halfway across the world. You may not have the friends nearby that you long for, but you’ve got a network across the world, and we love you. XOXOReplyCancel




The Pain Never Stops – by Julian Thompson

Driving to work today after dropping my 4 beautiful kids to school, I again felt the pain of forebode and anxiety, that lives in me constantly.

I never thought I suffered from anxiety and depression before Duchenne, but on reflection to my childhood I recall times where I literally froze and panicked. Going into Year 2 at Collaroy Plateau Primary School and being taught by the “toughest” teacher there was, made me panic and was a good example. Running in cross country races and doing athletics literally made me sick with fear and worry that I would not achieve what I wanted to. Waiting all day at a district carnival for the last race, the 800m, made me feel the same. It made me want to run the other way. Even in my early career in financial markets, I recall crossing the Sydney harbour Bridge on the way to work as a trainee FX Broker, and the panic would set in and make me want to go and hide.

However, on Father’s Day 2006, the news of my boy James having Duchenne muscular dystrophy turned me upside down, shook the hell out of me, and I have never truly righted myself ever since. A “good day” is now one where I am generally with my close school and rugby mates, who I trust and love, where we slip back into routines that we have been doing for years, and that time together helps me temporarily forget the pain I feel and the reality that I will most likely be burying my son far too soon.

Never far away, though, is the “Black Dog” and the feeling that if I don’t pay attention he will rise up and bite me again like he has in the past. I hate it, it makes me scream. I hate that the “normal” I once knew is no longer and never will be within my grasp. I hate that no matter what I do in terms of taking on the fight of Duchenne, I will not beat it. As “animals in the jungle”, our flight or fight instinct would have us back out of a fight that we knew we couldn’t win. The Chinese philosopher Sen Zsu” wrote that “ Every battle is won or lost before it is entered into”. Well, I wake up every single day to go to battle in a fight I know I will never win. It really does take its toll, and I constantly feel like a shell of the man I see in the mirror. No matter how successful an event is, or the amount of money raised, there will always be a disconnect between the outcome gained and the outcome required to take away the sadness.

There have been days, too many of them in fact, where the pain and depression and anxiety hurt so much that I have had dark thoughts that are not healthy. Thoughts that will stop the pain for me, but of course create even greater pain for those I love. And yet every morning, I wake to the alarm, look at the picture of my beautiful wife and 4 gorgeous children, and tell myself that “you will never, ever, ever give up”. I remind myself that I was brought up as a fighter and I have to keep going. Duchenne is not just a word, it is not just a disease that sees boys not being able to walk. It is so much more complex and taxing on every level. It is brutal. It never quits, and no matter how hard you fight it, you feel like you are fighting a constant retreat.

So how do I deal with these feelings of sadness, depression, and constant grief, you may ask? I have found that the best thing for me is to stay in the fight, and not turn my back on it. The establishment of the Tour Duchenne in 2009, as well as other fundraising events, keeps me “busy”. After holding out for the hope of a miracle drug that might reverse, or even stop, Duchenne in its tracks, and then feeling the sense of let down early in 2010, I had a realisation. I realised that for me, personally, it is better not to focus on the science or sit there all night researching what “may” cure this disease in 5 to 10 years. But I hope that when they do find a cure, I will be one of the first they call. To hear a professor tell me on a conference call that the $900,000 my friends and I raised on a bike ride was “not really a lot of money”, made me decide that the effort I put in will be focused on the care, services, respite, assistance with equipment, and all the day to day needs of the Duchenne community.

That is what the Fight Duchenne Foundation is all about, and why it has been established. To allow the efforts of me and my network to make a tangible and real difference where we can. There have been people on my journey that miss the point, and question what I want to achieve. These people and their doubts are so toxic and fatiguing that I have absolutely zero time for their negativity, and I do not want it around me at all. The Duchenne train left the station for me on Father’s Day 2006. A lot of people boarded that train with me, and have been along for the ride ever since. They are my friends, the ones that gave me the undivided support, loyalty and love that has not only figuratively, but literally, kept me alive. Without them coming to the aid of a mate, I would have been but a memory to a lot of people who now read this. But then there are those who have jumped on the train and found themselves to be generally incompetent, or have missed the point of what this is all about, and who have wanted to pull the safety break. To those people I want to say – this train isn’t stopping and it is time for you to make your way to the nearest door, and throw yourself off it.

I could have easily set up a Trust Fund for my boy James alone. Over the last 10 years, with the same support I have received, I could have raised enough funds to allow James the life he so richly deserves. Instead of owning a home, we rent. Instead of providing him the extra comforts and experiences he deserves, we go without. We watch our friends take great holidays and go camping, we watch families and siblings take on so many adventures like hiking and skiing and surfing. All those same things that we did as children and desperately wanted to do with our own family. But, due to this disease, my boy James misses out, and his siblings go without also. That’s cool. My family are learning about humanity, and the love a family requires, but it doesn’t make it easier on a road that is already difficult. So instead of having a bag of money for the upcoming car purchase and modification, the wheelchair costs, the renovations to a home, the pool & home hoists etc, we have nothing prepared for him directly. But I am trying to drive a community to rally around all the Duchenne families and not just ours. I may be doing it all wrong, and perhaps I should just focus on James, but if we all did that in this situation, nothing would get done, changed or fixed.

The way I look at the life we have been “dealt” is this – my boy James is the inspiration to make a difference in so many more lives than just his own. Families on the same journey as us will be touched by my boy through the work that I do and the life that he has lived. Fight Duchenne Foundation will allow a legacy of James’s life being more than another statistic of a life taken too early by Duchenne. It will be my life’s work, no matter what the outcome or the longevity of James’s beautiful life.

All I ask is this – trust in what I am doing, and what I will create. Help if you can, and be there when I ask again for your assistance. Please don’t doubt me, and what I am doing. This is my survival mechanism both emotionally and literally, and through my own highs and lows this is my vocation and calling. This keeps me living.

Tomorrow the pain will be there again. And watching my boy not being able to get into his own bed will make the pangs of anxiety, sadness and depression appear yet again and that “Black Dog” will be waiting at my back door. But my alarm will go off, I will rise, and I will do my best. And I hope that one day, what I am working towards will come to fruition, that the world will see James Thompson is living a life with greater purpose and honour and has given the inspiration to allow so many more families more hope and happiness in their lives than they enjoyed yesterday.

Love Julian

  • Annelie Johansson - I know that pain. I have twins, both diagnosed with duchenne. I hate duchenne.ReplyCancel

  • Brid Murray - Well said Julian. I feel your pain and I’m sure that’s the way my husband feels too. We too don’t collect or fundraise for ourselves but for our local organisation. Some goes to research but most goes to enhancing the lives of boys and girls with DMD, buying equipment, summer camps, respite etc. We also feel that’s the biggest need once the kids get older. Well done to you. Hugs from Ireland xxReplyCancel



Dear Facebook,

Every single time I log on, without fail, you ask me one simple question. Just one.

“What’s on your mind?” 

If only my answer tonight was as simple as the question you ask me every single day. But it isn’t. Tonight, my answer is complex and, quite frankly, utterly heartbreaking.

You see, tonight I had to hug my son tight and dry his tears as he asked me “why is it so hard?”, and “why did it have to happen to me?” And I couldn’t answer him. Because I have no answer. I mean, what answer could you give to explain why a perfect and beautiful little boy would be dealt such a terrible hand in life? How do you explain to your son that life is random and shit happens? Because this IS shit. It’s absolute utter shit. He cried, big fat tears (and even snot tears), because his life is so hard and he can’t do anything, or play anything, or do what other kids do. I know some of you will suggest I tell him that there are so many other things he can do, and to look on the bright side and live in the moment. And all that other shit that people say to make themselves feel better. And if that’s what you want to say, then I suggest you go say it to someone else that will appreciate it. Because if you say it to me, I will just throw it back in your face and unfriend you. I don’t need to hear it. Not right now. Right now, I need to try and soothe my boy in the hope that he will calm down, stop hyperventilating, and start breathing normally again. Right now, I need to just let him cry it out and be angry with me and the rest of the world. Right now, I can’t do anything but agree with everything he says. Because it’s how his father and I feel as well. It’s just not fucking fair.

Today is Sunday. Many families here on the Gold Coast spend warm sunny Sundays on the beach, either doing Nippers or swimming or surfing. James has always loved the beach, especially the surf. But enjoying the surf is no longer a possibility as he fatigues quickly and can’t even maintain his balance when the smallest of waves hits him. And once he’s down, he can’t get back up. He can barely keep his body upright. It’s hard for him, seeing the ocean every single day, hearing how much fun his siblings or friends have at the beach, knowing that he can’t enjoy it. Oh yes, he has a beach wheelchair, but he’s 11 and he doesn’t want to be different. He hates that people stare at him, that they feel sorry for him, that they aren’t able to treat him like a normal kid. When we grow up, we all want to stand out from the crowd in some way, but kids are the opposite – they just want to be like everyone else.

Anyway, being Sunday we had to get out and do something as a family. But what do you do as a family when one child is not only wheelchair-bound, but also has immense body weakness and fatigue? The only thing we can do as a family is go somewhere for lunch. Let me tell you, going to lunch every single weekend becomes not only boring, but usually very expensive as well. And yet we still do it because that’s the only thing we can do together that he enjoys. He has no friends, he certainly has no social life outside of school. We even restrict our 10 year old daughter from doing more with her friends because she’s the only real friend that James has, and we will do anything to make him happy. I know that’s not completely fair on her, but she’s such a sweet and caring girl that it usually doesn’t bother her. Eventually, though, it will. Eventually, he will be left with no one but his dad and I.

Tonight, he asked me why his friends have birthday parties and don’t invite him, even though he asks them to his. Only one boy has ever asked him to his party, and that boy wasn’t even his best friend. Tonight, he was upset because the boy he calls his best friend had a birthday party and he wasn’t invited. I was hoping he wouldn’t find out, but you know how kids are – they like to talk about what they did on the weekend. That’s how he ended up hearing about it. He doesn’t want to go to school tomorrow, and has begged me to let him be homeschooled next year. Truth be told, I don’t think it’s such a bad idea. After all, he rarely has anyone to talk to at school, and he spends many lunch times riding his motorised scooter around the school. By himself. To waste time until the bell rings. Can you imagine what your time at school would have been like if every day was like that? With no friends to play with, or even talk to, riding around school by yourself on a scooter wishing the bell would ring? School was hard enough, trying to fit in and avoid the bullies. Imagine not having any chance of fitting in. Imagine kids constantly staring at you because you are different. Imagine being harassed and not having friends to defend you. Imagine having no one to play with. Imagine how lonely his life is. And imagine how, as a parent, it kills us to be so helpless, unable to make the pain and hurt disappear. Because tonight, it’s how I feel. That’s what’s on my mind.

You asked, Facebook. You just had to go and ask. If you really must know, THAT’S what’s on my mind. And I bet you now wish you’d never asked in the first place. Because ignorance can be such bliss.


Heartbroken and Helpless.

  • Erin - My son is 9. His name is joe. He would love to be a pen pal with your son. I explained a bit about his struggles. He was excited to talk to a boy half way round the world. He is in grade 4 in french immersion. I am a family law lawyer. My partner is a glazier. We are fairly normal folks. Email Joe at joelumley8@yahoo.caReplyCancel

  • Katrina - This is one of the hardest things I’ve ever had to read. I’m so sorry for your sweet boy.ReplyCancel

  • Kimmy Watters - please know how sorry i am , i know you hear it a lot, but i care and you son is special, love. i believe he can do anything he wants nobody can take that away form hin. i believe in him kimmyReplyCancel

  • Randy - I can symphasize. My son too is in the same situation. Heartbroken is right.ReplyCancel

  • Louisa - Thank you for sharing it helps others as well as yourself. God bless you and yours are in my prayersReplyCancel

  • Mel - I’m so heartbroken for your son & all of our children. I will send love & light & prayers. My son 8 & is weakening more & more daily. This is such a cruel & f###ed up disease. I truly believe it’s hell on earth & really hope & pray in an afterlife where our boys will be free. I don’t understand how people can be so cruel. So many prpple really don’t get!!! God blessReplyCancel

  • Yvette - Lots of love from another family where this bastard disease has destroyed. Same shit different country. Your posts make me realise that the world is not such a lonely place and we are not on our own. Big hugs xxxxReplyCancel

  • Amy - My heart aches for you, because we have been there. Although my son is now a teen, we still live it daily. Would love to penpal if you’d like!ReplyCancel

  • april - My son says the same to me. 🙁 i wish i could take all him pain away. So he can enjoy being a kid and do things like other kids. Are boys are very special:) God Bless them. You and your family tooReplyCancel

  • Candy - I’m truly sorry your child and others with this wretched disease have to suffer so. He is lucky to have such a caring and compassionate family. Best wishes to you all.ReplyCancel

  • Melissa - We seem to be living mirrored lives although I’m in the US. My son is 10 with DMD and you described his behavior when you wrote about his anger, outbursts, etc. My husband is the photographer in my family. Thank you for writing the words I wish I could say.ReplyCancel

  • Wanda - My grandson, Cooper, is now 9 and also living this Duchennes nightmare. I currently homeschool him as I am a retired educator. Cooper feels alone in this as there are not others that have this here. We are surrounded in really great people, but it is still so hard for him. Cooper could also be a pen pal. I will clear it with my daughter should you write back. We also live right on the beach which he is crazy about. Sounds like they might have common ground. I know that writing gets tedious and tiring too for our boys. Your family and your son will be in my thoughts and prayers.ReplyCancel

  • sally - I have nothing to say other than to acknowledge that you are right to both feel sad and heartbroken.

    I hope you and your son both have better days that you can share with each other soon. SallyReplyCancel

  • Melissa - All I can say is I love that you wrote this. My heart just Aches for your sweet boy and for your family. While my oldest child has no physical limitations, he is autistic and can be violent during an ‘attempted’ outing. In fact, he is during nearly all. My two younger children don’t get to do much outside our house that we call a prison. My son has no friends, but sadly, in his case, I don’t think he knows the difference. I offer you understanding and love. I know that the two of you must be incredibly wonderful parents.ReplyCancel

  • jeani - From the bottom of my heart, I’m so sorry😔 I can’t imagine your heartbreak. It seems sacriligious to even touch the 👍🏻 ‘Like’ 😪Your beautiful image evokes such emotion …. I just want to reach out and hug you all❤️ReplyCancel

  • Jeannette - Our son is 28. He is a very bright, positive man. I totally understand your feelings. We live with DMD for 20 years now, when our son was diagnozed. We have one older, healthy son. What we do with our family, is watching movies, dvd’s. We all love it and that’s the thing we do together. Going shopping. Like Ikea or something. But since 2004 no holidays. Takes 3 hours to get him ready in the morning and 2 to get to bed…he has a trachea tube since 2014, but doing very well since. He never asked us: why me. He is such a strong boy/man…but my heart is constantly broken. He has so many talents, but is not able to use them properly. But is able to lead a meaningful life….he is everything for us, for me. My rock. But I know that dreadful day is coming.
    DMD is a monster.ReplyCancel

  • Brid Murray - Why didn’t you let me die? My nephew said this to my sister. He is 22 with DMD. Howe do you answer any of these questions? There are no answers and yes, it’s totally shit. I’m just waiting for my 16year old to ask me the above question and I cannot prepare an answer. How can I? Hugs Sharyn and Julian xxReplyCancel




September 4th is a day I’ll never forget. The anniversary of D-Day.

It was on this day, Australian Father’s Day in 2006, that we were told our 2 year old son had an incurable and terminal muscle wasting disease called Duchenne muscular dystrophy. It was on this day our world fell apart. Each year, this date is difficult for us. Because each year, we are a little closer to where we don’t want to be. Each year our son loses more of his physical ability. Each year is another year without a cure. And eventually, the year will come when he is no longer with us. Nine years is a long time in the life of a child, particularly a child with a disease like Duchenne (or any other chronic/terminal illness). The past nine years have been filled with many ups and downs. And many lessons have been learnt, lessons that I would never have learnt had we not ended up travelling down this road.

30 Lessons that having a child diagnosed with a chronic/terminal illness has taught me.

1. It’s harder than I thought it would be. Much. Much. Much Harder.

2. Blood isn’t always thicker than water. In most cases it is, but just because someone is family doesn’t mean you have to like or respect them. Life is too short to bother with people like that.

3. Sometimes it’s the people who mean the most to you that understand the least, or run away the fastest. And sometimes the people you least expect end up being your biggest supporters.

4. Your partner is your ally, not your enemy. They are going through this as well, they are struggling with watching their child endure such difficulty. It’s just as hard for them as it is for you. So don’t take it out on them just because they are the closest person to you. Remember, it’s not their fault either.

5. There are crazy people out there who think it’s not fair that you get to take your family on a holiday with Make A Wish or Starlight Foundation. Some are even resentful of the fact you can park closer to the shops using a disabled parking permit. Insane, I know.

6. Just because it’s marked as a Disabled Parking Bay doesn’t mean that only disabled people will park there. Selfish people will as well. And apparently, when the Mums & Bubs parking is full, it’s okay to simply use the disabled bays. So I’ve been told.

7. Every time a friend posts a photo of their son winning Man of the Match or MVP or their daughter in a dancing recital, it breaks your heart. Because you know your child would have been a natural at any sport or activity if it wasn’t for their disease.

8. Hope is a heartbreaking thing to cling to. Each time I hope for something, and get let down, it’s like D-Day all over again. I can’t keep putting myself through that, so I don’t aim high on the hope scale. But, just because you no longer hope does not mean that you can no longer live. Living without hope of a cure should be incentive enough to make every damn day count!

9. Get out with your kids. Every weekend. See the world. Breathe the fresh air. Feel sand between your toes and the rain on your face. Eat strange foods and take in foreign sites, both in your own country and overseas (if possible). Just live life. Together.

10. Don’t allow anyone to make you feel guilty about doing what you feel is right or needed. Whether it’s a much needed holiday or a piece of equipment that will make life easier, or even a day at a day spa, you should never be made to feel guilty about it. Besides, it’s no one else’s business.

11. Take time out, every opportunity you have. This road is exhausting, allow yourself to recharge. Even if it’s only an hour in a coffee shop every Monday morning, after dropping the kids to school. Grab yourself a magazine or a book and enjoy the peace.

12. Take photos. Thousands of photos. And print them or make them into books. Before you know it, this time will have flown by. Make memories, record them, and DISPLAY THEM.

13. Don’t EVER feel like your child isn’t sick enough to qualify for Make A Wish. They are. Believe me.

14. Ask for help. Don’t try to do it by yourself.

15. Cry. As much as you need to. In fact, SCREAM!!! It can be quite cathartic and does wonders for your sanity.

16. Some people will tell you that it’s not their fault your child has a terminal/chronic illness. What they seem to forget is that it’s not your fault either. And it certainly isn’t your child’s fault. But it somehow makes them feel better to utter those words. I’m so glad THEY get to feel better.

17. Find a community of people going through the same thing as you. The friendships you make, and the support & advice you will receive, cannot be replicated by others that have not traveled the same road as you. They will become your second family.

18. Unless they are (or have been) in your shoes or something similar, people who say they understand actually don’t. It’s not personal, it’s just a fact.

19. There will be days when that smile you usually have plastered on your face will slip, and the truly overwhelmed you will be visible. Some people will run when they see what you are like behind the facade – they can’t cope with the pain of others. And there will be those who dare to remark “chin up”,  simply because they won’t allow you that particular moment to be vulnerable and distressed. You don’t need those people in your life. If they can’t deal with you when you need them most, then they have to go. You should be allowed to have your moment, a moment to scream or cry or wail or hit a wall or just quietly sit. We all NEED those moments, we need to let it all out. And no one should ever make such comments or act in such a way as to trivialise your pain.

20. Just because they are a doctor, doesn’t mean they know the answers. It doesn’t mean they know everything about the disease your child has. Arm yourself with knowledge, either through your community of others living with the same disease or via the internet. Don’t take a doctor’s word for everything. You will end up living and breathing this disease, and all the associated research that is ongoing. Knowledge is power, education is paramount.

21. Don’t forget your other children. Whilst one might demand all your attention, don’t neglect the others. They need you just as much. After all, they don’t have a normal upbringing and they will end up losing their sibling. It’s hard on everyone in the immediate family. Period.

22. Talk. With each other. Never lie. If your child asks a question, tell them the truth (unless, of course, they ask whether Santa Claus is real). But only answer the question and nothing more. Don’t go into detail if the hard truth is more than they can handle.

23. It’s not all about research. Fund-raising money is needed in other places as well. Families are mortgaging their homes and going into debt to pay for renovations, vehicle modifications, medical bills, equipment and many other things that regular families don’t have to worry about. Marriages are falling apart because of the financial, emotional and physical stress of having a child with a chronic/terminal disease. Depression is a major factor, with the entire family. Holidays become a thing of the past as it’s way too expensive and difficult for many families to take a bed-bound or wheelchair-bound child away, or a child hooked up to machines or living with a compromised immune system that prevents them from going out in public. But these families actually need a holiday more than most other families. They need “time out”. Before they have a breakdown or their marriages break down.

24. It’s fine to make plans. But expect them to change. Many, many times.

25. Most friends who run to the fire to help will eventually fatigue, because this is a marathon and not a sprint. As parents, we are utterly fatigued, and this is only the beginning. But we don’t have a choice. This is our child and we can never run away. They take up our time, they take up so much of our energy. And the care we provide for them often affects relationships with friends as they have no understanding of how exhausted we really are, or how little time we have. We have to listen to people around us complain about the most trivial of things, about how annoying their kids are or how much work it is to run them around from one place to another. And I know that their problems are relative, because you only know what you know. But if only their “problems” were our problems. If only they realised how simple and “unproblem-like” their complaints really are.

26. Life goes on for everyone else. And that’s hard to accept.

27. When the medical profession says there’ll be a viable treatment in 5-10 years, don’t take their word for it. And don’t get your hopes up. Nothing is ever certain.

28. Be present. Be visible. Be engaged. Because one day they may be gone, and you will grieve the moments that you weren’t there. And that goes for all your children.

29. Dance. And sing. And laugh. Loudly. Dancing and singing and laughing are good for the soul, and great at helping to overcome sadness. The endorphins are good for mild depression. The more you dance and sing and laugh, the better you will feel.

30. Live to be happy. Live to ensure your children are happy. If your child becomes a doctor, a palaeontologist, a supermodel, an artist, a cleaner, or an actor, be happy for them. It shouldn’t matter if they marry a woman OR a man – if they are happy then be happy for them. Let your children be whom they are meant to be, not whom you want them to be. Be thankful that they will even live to make those choices, as many children will never have that luxury. If you can’t be happy for your child’s happiness, then I’m sorry to say but you have failed as a parent.

It’s difficult to understand for some, but every single day we survive is a gift. Every single day we have our children is a gift. Every single day we can take a breath is a gift. Every day still has something good in it, even when the day as a whole is bad. And every day that goes by creates a lasting memory, a memory that will join the countless other memories and flood our heads with pictures and moments. It’s all part of life. And whilst life can truly suck, it’s also pretty darn beautiful. I hate the disease my son has, but I consider myself lucky when I look at who I have in my immediate life. And I wouldn’t trade them, or the memories we have created together, for a single thing.

This is our life, a life completely different to what we envisioned over 9 years ago. But this is how we’ve learnt to live with it, and these are the lessons we’ve learnt. Just remember – think slowly, breathe deeply, love greatly, laugh loudly, and take it one step at a time.

  • Summer Cates - What a WONDERFUL read! I want to keep this forever. Bless you and your sweet family! xx summerReplyCancel

  • Gary Stepp - So very true! Even across that big body of water it’s good to know there is someone feeling the same emotions and lending support.ReplyCancel

  • Rom - Thank You!
    I don’t feel so alone anymore!
    G-d Bless You!ReplyCancel

  • Connie - Thank you for sharing. Thank you for your insight and coping methods! Life is so very often not what we had envisioned. Blessings to you, your son, and family!ReplyCancel

  • Ivy - Well said, Sharyn. Thank you.ReplyCancel

  • Shorty - Tears beat me to the end, so beautiful.ReplyCancel

  • Jeannette - All true. Very well said. Our son is 27th now, and we are living 20 years with the Duchenne monster. It changed a lot…every day is a struggle. But he’s worth it. But we’re very tired right now…ReplyCancel

  • Denise Chorzewski - Tears and Truth! Living with our sons Duchenne for 14 years is summed up in what you have written. thanks for sharing how we all feel everyday. Thankful for angels that come from unexpected places, who are there for us, love and are there for Joey, they have become part of our family instantly. A lot of family have disappeared completely. It’s hurtful but we are thankful for The family who has stayed and the friends & angels who get it & want to be there for us. Don’t know where we would be without them.ReplyCancel

  • Karen Jessop - Wow. You’ve put down in words exactly what’s in my mind. Thank you for sharing x Karen UK DMD familyReplyCancel



It’s Fathers Day 2006.

I’m sitting in the office of Raffles Hospital’s paediatric clinic, alone with my 2 year old son. He’d been having some speech issues, and falling over for no apparent reason. So I did what any normal mother would do – I took him to the doctor for peace of mind. But deep down, I knew something was amiss. I knew something wasn’t right. I was dreading hearing the words from the doctor’s mouth – “your son has mild autism” or “your son has mild cerebral palsy”. The thought of him uttering those words was beyond terrifying. How would I cope? Our lives would never be the same, all those dreams we’d had for our son would remain just that – dreams.

Those thoughts kept running through my head. I held my breath as I waited for those awful words. But those words never came. I wish they did, but they didn’t. Oh, if only it was mild autism or mild cerebral palsy. No, the reality was worse. So much worse.

“He has muscular dystrophy”

Those words, and the smile that played on his lips, will forever haunt me. Until the day I draw my final breath. Those words fell from his lips. I heard them, in such agonisingly slow motion. And it took a moment for those words to register in my brain. The thing is, I knew what muscular dystrophy was. I’d known ever since I was a child and had watched a 10 year old on TV whose mother was pleading for a cure because her son was dying. He had muscular dystrophy. My son was going to die! Yes, confirmed the doctor. And that was that.

The next few months were spent visiting specialists, and coming to terms with our son’s prognosis and what his future entailed. We honestly didn’t give much thought past the fact he’d be in a wheelchair. That alone was unimaginably difficult to comprehend. Our son would spend his short life in a wheelchair. He would need all the help we could give him. We didn’t think much more past that one thought. Honestly, we couldn’t. It was already too much to take in, too much to cope with, too painful to consider. There were regular appointments, daily drugs and supplements, nightly massages and stretches, and constant supervision whenever he played outside. This was to become our “new normal”. The daily and weekly routines, which were so overwhelming at first, became part of our lives, things that we did on auto-pilot. After a while, we almost forgot how life used to be. We were lulled into a false sense of security, thinking that this was as bad as it got and we would be able to handle this.

The thing we didn’t realise at the time, or more that we didn’t want to acknowledge (because denial is not just a river in Egypt), is that Duchenne is more than having a child in a wheelchair. Much MUCH more. Because once they lose the use of their legs, they start to lose the use of every other part of their bodies. If ONLY it was as bad as ending up in a wheelchair. If ONLY it was just their legs that didn’t work.

As the years went by, our son achieved a number of milestones. He could jump, ride his bike, run around with his rugby ball and ride on his scooter. We almost forgot about the dark cloud hanging over us. He was slow, that much was obvious, and he couldn’t walk all day like his younger sister, but he was still able to do so much. He was taking daily steroids and they seemed to make a huge difference. Yes, his personality had changed and he was a little bit aggressive, but he was achieving milestones! That in itself was fantastic!

And then, in 2013, he rode his bike for the last time. He knew he couldn’t do it anymore. It was just so hard on his weakened arms and legs, and he was exhausted just be holding himself up on the bike seat. His bike was retired that day, his precious blue bike that he’d had so many hours of pleasure on. Even though he’d been using a wheelchair and motorised scooter for a few years by this time, retiring his bike was the first time we really had to acknowledge that the disease was progressing. Our “normal” was about to change again. Once again, we were overwhelmed with what our new “normal” would entail.

Our new normal is difficult. James is transitioning. Ugh! I hate that word. TRANSITIONING. Most of the time, a transition is either a choice or a right of passage. Bruce Jenner transitioned. He became something that made him happy. Cinderella transitioned into the belle of the ball. A girl transitions into a woman. A boy transitions into a man. As we grow older, we transition and move forward. But in the case of a child with duchenne, that transition is backwards. There’s no moving forward once they go into primary school. They start falling more, their balance diminishes, their strength wanes. They lose control of everyday functions and abilities. They can no longer run around an oval, or ride a bike. They fatigue quickly. And that makes them both angry and sad. Angry, because they have no idea what is happening to them. And sad, because they used to be able to do those things and now they can’t. They sit there and watch their siblings and friends have fun playing. All they can do is sit. Sit and watch. Nothing more. Some kids take that in their stride, but most kids struggle with it. A kid wants to be like other kids, they don’t want to be different. That was never part of the plan, being different. As adults, differences are embraced by many, but kids don’t often understand that. So different kids tend to be left behind or excluded.

The hardest thing about Duchenne (at the moment) is the loneliness and isolation our son feels. He will be 11 years old next week, and has only ever been invited to 2 birthday parties and one play date, both when he was much younger. We’ve known all along that we’d have to accompany him to birthday parties and play dates, and that was okay. We were prepared for that. But the birthday parties and play dates never came. Apart from two when he was younger, he has never been invited to a party or a play date. I can only assume it’s because parents are concerned about taking on the responsibility of looking after a disabled child, never considering that we would make arrangements to ensure he could go and enjoy himself safely. So each weekend and every school holiday is spent watching his brother and sisters go to parties or sleepovers. He waves them off at the door, with a fake smile plastered on his face, and then goes back to playing on his iPad. Alone. The loneliness is his new normal. The isolation is his new normal. And it’s a screwed up “new normal” to have. He’s going through something that no one else could even imagine, and he doesn’t even have friends to help him through it. He’s all alone. He has us, but at 11 years of age you want your mates. You want friends. How, as a parent, can we accept that this is his new normal? No one ever told us it would be like this. No one ever told us he would be so lonely.

In light of his loneliness, we make an effort to get out each weekend. We try to do something special, but it’s always limited to going to lunch somewhere. We can’t go hiking, or to the beach, or camping (although that has more to do with his father snoring!) We can’t play rugby or cricket with him, or shoot hoops. We can’t go for long walks unless he gets pushed in his chair. And I can tell you, he doesn’t like being pushed around. We can’t go to putt-putt golf because his chair doesn’t fit around the course, plus he gets too exhausted. He can’t ride a horse as he doesn’t have the strength to hold himself up. We go on long drives, and we can take him to museums and movies, but with 4 children the expense mounts up. He can’t go outside and play after school, the way other kids do. He has two best friends in life – his iPad and his Bobby the Bear (he’s had since he was born). But they don’t talk to him, they don’t make him laugh, they don’t listen to his fears and tell him everything will be okay. It’s a one-sided relationship he has with them. He needs more. But we can’t give him more, because this is his life. Welcome to our new normal.

I have always said, you only know what you know. YOU ONLY KNOW WHAT YOU KNOW. In other words, you only know that the happiest moment in your life was the moment you were happiest up to that point. There might be moments in the future that will make you even happier than how you have felt up till now. The same goes for pain. Unless you’ve experienced childbirth or a broken bone (or worse), you have no idea of how physically painful things can be. If the most pain you’ve ever experienced is a grazed knee, then childbirth will seem excruciating. But you honestly can’t imagine how painful it will be until you go through it yourself. The same goes for emotional pain. A breakup with someone you love can be painful, more painful that other disappointments you might have experienced up to that point. But watching a child die, and learning to live life without them, that’s probably the most painful thing any parent will ever experience. I haven’t lost a child, so I can’t truly fathom how overwhelming or debilitating that sort of pain can be. But I know I will experience it one day. And I know it will be way too soon. All I know, at this point in my life, is that watching my child’s body slowly “die” is the most excruciatingly painful thing I have ever had to go through. Nothing I went through previously even comes close (except for perhaps the haze that followed after his diagnosis). My child is dying. Slowly. And I can do nothing but make him as comfortable as possible and watch it happen. We still have many happy moments, we have moments full of joy, but those moments are always tinged with THAT knowledge. Nothing will every be as joyful, or as happy, as those that we experienced before those fateful words came out of that doctor’s mouth.

Duchenne will continue to progress, his body will continue to deteriorate. Who knows what our next “new normal” will be? All I know is this – his arms are going and he will go off his feet for good. We will require hoists to move him, change him, shower him, toilet him. He will be like a 120+ pound baby, a baby that needs to be fed and cleaned and entertained. A baby who needs to be turned numerous times each night just to stay comfortable. The thought of each of these fills me with fear, because I know that the adjustment period will be excruciatingly difficult. He’s not one of these boys that is happy just being. He gets angry with us, he screams at us, he cries, he lashes out, he hits. He’s trying to come to terms with what is happening, and he’s struggling. We find it hard, but he seems to be finding it even more difficult. I mean, seriously, who can blame him? Why should he have to accept this as his new normal? When he’d rather be doing what every other kid at school is doing.

One day, he will no longer be here with us. And we will be forced to accept that as our new normal. And that will make all those other “new normals” that I have had to deal with an absolute walk in the park. That’s a “normal” that no parent should ever have to come to terms with.

Because it’s just not normal. IT’S NOT FUCKING NORMAL.

  • Connie - Thank you for sharing. May his story, and your story, help others! Sounds like your son is blessed to have a mom like you! Please say “Hi!” to him from Minnesota, in the USA. I hope the best for him and your family. 🙂ReplyCancel

  • Anon - My son has Duchenne too. It’s awful. No better word to describe it. Just awful.ReplyCancel

  • Robin - This just breaks my heart! I think about you and your family often. I know there is nothing I can say, but just know that you are in my thoughts.ReplyCancel

  • Jeannette - Thank you for writing this. It is so true, and the story of every parent who has a boy with Duchenne. Our son is 27 years old now. One year ago he got his trachea tube. He’s doing well, but life is so difficult. And so sad, although we try to enjoy life as much as possible, there is always, always that dark cloud. So many painful things happened, like you mentioned that your child isn’t invited anymore…can’t help himself at the toilet…a.s.o. so many “milestones”…when he couldn’t ride his bike anymore…heartbreaking moments, all etched in my heart and soul.Thank you for writing this. Hope lots of people read it.ReplyCancel

  • Anonymous - So depressing, remember your son has dmd not you !!
    Find him things he can do, forget what he can’t and let him live the life he’s been given successfully and happily…ReplyCancel

  • Kara - Sometimes I just can’t “feel” anymore. When that happens, I know I’m in the pretend world. In pretend reality, I don’t have to think about the progression of this horrible disease. I can act like our life now is what our life will be. Except that it won’t. Sometimes I don’t have the feelings. Other times I don’t have the words. Thank you for sharing your words. I hope you don’t mind; I’m going to link to this post on my blog/fb page.ReplyCancel



I have a lot to catch up on this week. Firstly, I haven’t posted in three whole weeks! I’ve been sick, and it’s gone on for so long that it’s really gotten me down. I just can’t stop coughing! It’s finally getting better, but 4 weeks is a long time to cough and wheeze. And because of that, I haven’t slept well, so that makes me grumpy as well as coughing and spluttering. I’m telling you, I haven’t been a fun person to be around. As well as that, we have had horrible weather. January is usually our wettest month, but this year February has taken the crown. Not only have we had some rainy days and loud thunderstorms, but we also had a Category 5 cyclone hit around 500kms further up the coast, and it sent lots of horrible weather down our way. Because we hadn’t had enough bad weather already. Apparently.

Anyway, I knew I had to jump back in this week and catch up big time! So here it is. Sorry for the huge share, but I promise I’ll be back to weekly from next post.

Day 32

Is it just me, or is Paddy now taller than Saraya? He’s 18 months younger, but it looks like he’s just overtaken her! I think he’s going to be a very tall boy.

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Day 33

Exploring . . .

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Day 34

Waiting. Patiently.

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Day 35.


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Day 36

It was rather windy at the beach today.

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Day 37

Who knew Cinderella liked working in the rain?

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Day 38

Because doesn’t everyone need gumboots to sweet the driveway clean after a storm? Pink gumboots?

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Day 39

Because being a dad isn’t always fun and games, and it’s certainly not without pain, but there’s nowhere he’d rather be.

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Day 40

It’s one thing to find a beautiful location, but it’s another thing to have it all to yourself.

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Day 41

Working out . . .

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Day 42

Surfie chick bum . . .

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Day 43

A fun family day out to the beach isn’t fun when your son with Duchenne is suddenly faced with the stark and heartbreaking realisation that there won’t be many more beach trips like this. A lover of the water since he was a baby, he no longer finds joy in it. He has no energy, he can’t walk on the sand, he tires in the water, and he hates being pushed in the beach wheelchair. We had many tears, and a great many meltdowns. This is what you don’t see, you only see the happy family memories, but you don’t see the devastated look on a little boy’s face when he realises his deteriorating body can no longer withstand outings like this. It casts a very dark shadow on days like this, and life in general. We are both feeling very fragile and emotional today, and that overwhelming sensation of spiralling down into the depths of darkness seem to be moving fast upon us. Much faster than we anticipated.

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Day 44

. . . and breathe!

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Day 45

Another day, another swimming meet. This time, she came away with a Bronze medal for freestyle. I love that she loves swimming.

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Day 46

I had to check out the Brisbane Botanic Gardens for an upcoming photoshoot. I think Paddy started getting into the swing of things whilst we were there.

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Day 47

My newest purchase, after my sapphire Kelly Moore 2-Sues finally had its last day. This new one, the Mustard 2-Sues, is almost just as pretty as its predecessor. I love my Kelly Moore camera bags!

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Day 48

With bad weather making itself known, this fella was looking for a dry place to hang out.

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Day 49

I didn’t get out much this week, with rain and wind continuing, and a cyclone up the coast sending us even more. So this is a photo from our day to Brisbane Botanic Gardens. It’s so pretty up there, I can’t believe it has taken us 5 years to discover it.

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Day 50

What do you do when a cyclone is bringing so much bad weather? You stay indoors and treat your Beanie Boos to a movie day, of course.

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Day 51

The rain was terrible today, so I edited this funny photo of Paddy from the Botanic Gardens – his laughing face makes me laugh as well.

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Day 52

The cyclone is no more than a storm now, but the rain has remained. It eased enough to get outside for a quick few photos, before it started up again.

365-052 resizeSo you know the routine by now. Follow the blog circle by clicking on this link, and see what the gorgeously talented Kari from Kari Ganske Photography has been up to.

Until next week, adieu!


And suddenly, my home seems quiet and lonely.

Yes, this week the kids went back to school. After six weeks off over Christmas, the new school year began this week. I am now the mother of 2 Year Five children, a Year Two child, and a Preppie! I can’t believe all my children are now at school. Believe me, I have gone through many tissues this week. I miss having a little friend to hang out with.

Anyway, enough of the whining. Welcome to another week in my life. If you are joining me for the first time, then please make sure you click on the link at the end and follow the blog circle around all my talented photographer friends. You’ll be inspired by all their gorgeous shots.

Day 25

The sun sets behind the lighthouse. I’m so glad I captured that beautiful golden light.

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Day 26

And so it goes.

Today was Australia Day. Not that we celebrated it at all. We stayed inside, where it was cool, only going outside to hop in the pool. We didn’t catch up with friends or family. It was just us. Instead, today we labeled numerous books and school items for all four children.

Yes, all four.

Tomorrow begins a new era. An era where I no longer have babies or preschoolers. Tomorrow, my youngest child will start school. And the thought of that makes me both happy and sad. Happy, because he is so excited and I just know he is going to thrive and do well, and he will make friends and begin the journey to discover what he is passionate about in his life. But I’m also sad, because my youngest is no longer a baby. I’ve had babies for so long, and I’ve loved having them. But tomorrow, tomorrow that all ends. Tomorrow, he will be a child on the fast track to adulthood. And it will be fast. My last born is growing up, and that makes me sad. Sad that I no longer get to hang out with him on Wednesdays and Fridays. Sad that I won’t get to watch him at Little Kickers on Friday mornings, or take him to swimming lessons followed by mummy-Paddy time at the nearby coffee shop. I know he will always be my baby, but I wish he could also stay my baby.

It’s weird, I thought I’d be okay, but I’m really not. This marks the end of one era, and the beginning of a new era tomorrow. And I really don’t think I’m ready for it. I’m not ready for James and Charlyse to go into Year 5, and I’m not ready for Saraya to start Year 2, and I’m certainly not ready for Paddy to start Prep. Where have the past (almost) 11 years gone? When did my children suddenly become so much older? I don’t understand why so many people wish their children’s lives away, so that they can start living their own lives again without the “burden” of childrearing.

I just want my kids to stay kids forever. I hate that time passes by so fast. Tomorrow will be a wonderful day for Paddy, and his siblings. And I’ll have a big smile on my face and I will be unable to contain my pride. But inside I’ll be bawling my eyes out.

Am I alone on this, or do others feel the same way?

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Day 27

Today was an eventful day.
Today was a huge day.
Today, I watched my four children go to school, including my youngest who had his first day.
Today, I was a very proud mummy who tried hard to keep the tears at bay, and failed miserably.
Today, I saw my children take one step closer to adulthood, on a journey that I can’t stop or slow down.
Today, I could do nothing but cheer them on, encourage them to take that next step, and watch them as they ventured further from my grasp.
Today, I laughed and cried as I watched my (not so) little ones, my former babies, enter their classrooms and look at who they would be spending the next 10.5 months with.
Today, I came home to an empty house, and it seemed so quiet.
And tomorrow, we’ll go through it all over again, only without tears this time.
I’m such a proud and lucky mummy!

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Day 28

Admit it, you loved doing this when you were a kid.

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Day 29

NIght time entertainment.

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Day 30

An evening walk. Not really, she’s way too young. But I did want to see if the driveway lights would illuminate her body as she walked past. I’m so glad she doesn’t mind being my model. LOL!

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Day 31

Do any of you have a best friend? One that you’ve had since childhood? And you’ve managed to stay friends all these years, through thick and thin? I don’t. I’ve never really had a best friend, one that I could call MY best friend and nobody else’s. But Charlyse has a best friend, a girl she’s been friends with since year 2. And they are close to inseparable. If they could, they would spend every waking minute together. I am so envious, I would have loved to have that sort of best friend. I hope they continue being friends for a long time together, hopefully for the rest of their lives. They said to me today, the worst thing about meeting your best friend at such a young age is that you probably will grow apart. I hope that won’t be the case, I hope they will be two of the lucky ones. Because really, they are so perfect together. And they are both so good for each other.

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So let’s see, that’s another week down so next week will be Week 6? Wasn’t Christmas only yesterday? Oh well, I’ll be back this time next week with another week in my life. In the meantime, follow the blog circle by clicking on this link and see what my gorgeous and talented (and incredibly busy) friend Julie Moses has been up to. You will love her images!

Until next week, cheers. xx

  • Ally - What a great post this week. You are a few steps ahead of me…my youngest starts school in the fall and I’m not sure how I’m going to handle it. They grow up so fast!!

    Beautiful week. Loved the lighthouse one! That light is amazing.ReplyCancel

  • Jana - Oh Sharyn, beautiful images and my mama heart hurts a bit reading about all your littles heading off to school <3 It will be my turn for that in September so hopefully you will have words of wisdom for me!ReplyCancel

  • Kari - I totally agree that watching our babies grow is bittersweet. I look forward to the new adventures and watching the person they are becoming, but I yearn for those little baby snuggles and soft baby skin. Beautiful pictures this week!ReplyCancel

  • Julie Moses - What an emotional and amazing week documented perfectly and gorgeously!ReplyCancel

  • Week 5 … and then we snapped » Nadeen Flynn Photography - […] continue the circle with talented Australian photographer Sharon Thompson Photography.  I just love seeing those gorgeous Australian locations in Sharon’s […]ReplyCancel



Today has been an emotional day. You see, all 4 of my children started back at school today after a 6 week break. Today, my eldest 2 went into year 5, my third child started Year 2, and my youngest started Prep. I no longer have babies, they are all school children. And that realisation is hard to accept, because I can still remember the day each of them was born like it was yesterday. Only it wasn’t yesterday, because they are now all at school. Life moves way too fast, and I don’t like it. So make sure you come back next week to see photos of their first day.

In the meantime, here’s last week in photos.

Day 18

With James back at the Westmead Childrens Hospital (this time with Julian), I took the opportunity to take the other 3 kids out for a day of “normality”. In other words, we had a Duchenne-free day.

I drove them down to Byron Bay, the most easterly point on Australia’s mainland, and they spent the afternoon bodysurfing (all by themselves – their dad would have been so proud of them!). Then as the sun began to set, I drove them up to the lighthouse. We walked down the headland, and then back up to the lighthouse to watch the sun set. It was amazing.

And I took away a few photographic memories. Just so we can remember what it feels like to do what other normal families do. That said, I couldn’t wait to see James the following night. I miss him when he’s not here.

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We had a lovely day out. And after walking down this path, from the lighthouse, and then all the way back up again, the kids were exhausted tonight. Oh, and I should add that I love trying out my HDR processing on Photoshop.


My last one from our trip to Byron Bay yesterday. And yes, it’s been altered. Just a little. I’ve been having some fun with photoshop.


Day 19

EEEEKKKKK!!! It finally arrived! My gorgeous Erin Condren yearly planner was delivered today. Now I can start keeping record of all my appointments, photo sessions, ordering and deliveries in style! If you are like me and prefer a gorgeous hard copy planner (I hate digital books, magazines and planners), then check out https://www.erincondren.com/


Day 20

Because some days it really is okay to not take a photo. And when that happens, you revisit some of the photos you took a few days earlier. In this case, I merged 3 images together to create this HDR image of the Byron Bay lighthouse, taken from the path leading down to Little Wategos Beach.


Day 21

What’s in a name? That which we call a rose
By any other name would smell as sweet.
~ William Shakespeare “Romeo & Juliet”


Day 22

Hoping for a strike.


Day 23

Because, apparently, TY Beanie Boos love movie days when it’s too wet to go outside. And yes, our Christmas tree is STILL up. I just don’t want to take it down.


Day 24

Because LIFE is a journey that no one should have to travel alone.

IMG_3145facebookSo, now that the kids are back to school, normal life resumes. That means I have a little more ME time, time to get things done, time to work on myself. But that is going to be a whole other story, and an entirely new blog. So stay tuned. In the meantime, follow the blog circle by clicking on this link and see what my gorgeous and talented friend Shelley from Time to Play Photography has been up to with her two adorable boys. I never tire of seeing their sweet faces!

Until next week, cheers. xx



I don’t know about you but, whilst I love school holidays, I’m usually completely over it by the end of week 5. And that’s how I’m feeling now. I just need some time to myself again. We’ve tried to stay busy these holidays, but the past 2 weeks have been pretty miserable, weather-wise. Still around 30C and 90% humidity, but rainy. That’s January on the Gold Coast – hot, humid, and wet. So here we are, just into the final week of school holidays, and I’m ready to get the kids back to school. And that includes Paddy, who will finally be starting big school. He is going into Prep this year, and it’s kind of bittersweet – my baby is off to school! But you’ll read all about that next week. In the meantime, here’s my last week in photos. Enjoy.

Day 11

Shower time. My kids have always had baths, ever since they were born. It was always easy to pop them all in together, without getting wet myself. Of course, as they get older, they prefer showers. Sari is getting to that stage. She still loves languishing in the bath, but I love that she’s now just as happy to have a shower instead. And the fact she can now wash her hair all by herself is a bonus.




Day 12

The weather has been crappy since the new year. Today was no exception. And with our car being out of action for a week, and expected to be so for another whole week, we have found ourselves spending most of our time at home. Today, this is where I found Paddy – lying on the floor playing Skylanders on his xbox. And on a day like today, I didn’t really care. He played happily, he didn’t make a fuss, and he was quiet. All in all, a pretty good result. But tomorrow? Tomorrow we really HAVE to get out!


This is my view down the hallway most days . . .


Day 13

“Let her sleep. For when she wakes, she will move mountains.”
― Napoléon Bonaparte

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Day 14

Freelensed – my first attempt. A person has to start somewhere, right?

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A few of my photog friends have inspired me to try free-lensing, and I can tell you that they totally rock it!!! But they’ve had a bit of practice, whereas little ole me is only a beginner. Today, again, I tried. And most of my pics were complete failures, which is to be expected. But I managed to take one that didn’t make the trash. And thanks to a lovely and talented friend of mine, who took an amazing photo of her little one in front of the tree, her inspiration moved me to take this image. That’s the great thing about surrounding yourself with other photographers – the inspiration they give is almost worth more than any single workshop.


Mummy, take a photo of me in my cubby!!!


He made a cubby in his room.


Day 15

The school holidays are almost over. And after a hectic and tiring (and rainy) few days, I decided that we needed to get out this afternoon as a family. So we went to the movies, together, for the first time in a long time! We had all been wanting to see Paper Planes, ever since we saw the first trailer, and it didn’t disappoint. I think I even saw Julian shed a tear or two, through my tears.


Day 16

I used to be able to put all 4 children in the bath together, and they would all play happily in there. But as they all grew, it went down to three, and now there are only two. They could honestly spend hours in the bath together, laughing and splashing and making bubble beards, but I know that it won’t be long before they too will insist on having a shower by themselves.

They are growing up. Too fast. And my water bill is going to end up very expensive!


Day 17

And so, just before bed, she read them a story. A story to entice the imagination to produce beautiful dreams, so they would sleep soundly.


And there goes another week. Remember to come back next week, and in the meantime click on this link and check out what my friend Julie has been up to.

Have a great week!

  • a - What a beautiful week of images. The light in your home is amazing!ReplyCancel

  • Nadeen - Love seeing your images, always.ReplyCancel

  • Cynthia - I love how you capture your children Sharyn! Beautiful week!!ReplyCancel

  • Amee - They’re all quite beautiful but I love the story that goes with the bath photo which is completly perfect and beautiful.ReplyCancel



I can’t believe we’ve just passed week 4 of the school holidays. That means the kids only have two more weeks before they all start a new school year. And with Paddy, my youngest, finally going to “big school”, it’s going to be a big one. Unfortunately, we haven’t had our family car this week, which has made it difficult to get around. We were lucky enough to be given a replacement car, but it’s only a 5 seater, and the 7 seater we have won’t fit James’ wheelchair if we all go out together, plus the kids get sick in the very back seats. So we have had to take 2 cars each time we go out. On the upside, it’s been raining so we’ve spent much of this week in the house.

This week, my sister came to visit. She has spent the last 12 months living and working in London, and we missed her greatly. Having her back on home soil has been very reassuring, especially considering how crazy the world has become with so many tragedies. I like knowing she’s so much closer.

Anyway, onto my weekly images. As you know, I’m doing my third 365 Challenge this year, so I’m sharing those images with you. Enjoy.

Day 4

He’s five now, and he has his own bed. It’s a racing car bed, one of those awesome Little Tikes racing car beds, the kind of bed that all little boys go crazy over. He shares a room with his sister, and each night they go to sleep without fuss, like the good kids they are. But every night without fail, around midnight, he comes down to my room and crawls into my bed. And he always brings friends to keep him company, with names like Hero, Slush, Scarum, Coconut, and Stripes. Every night, he carries down his team of mates and they all climb into my bed and fall asleep. Together. Paddy and his friends. And he holds them tight so they won’t fall out.

I don’t know how much longer this will continue, but I’m not so worried. I know he won’t come to sleep in my bed forever, and the bond it has created between us is very special. I am his safe place, his security. He knows I will watch over him, I will protect him. He doesn’t like to sleep alone, that much is obvious, and that’s not a bad thing. If he gets to 16 years of age, and he’s still crawling into my bed, then I will be concerned.

But he’s only 5. Five. He’s still a baby. And he’s my baby.

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There’s something so magical about a sleeping child. I often wonder what they are dreaming of at that exact moment.

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Day 5

I didn’t take any decent photos today. In fact, I think I only got two and they certainly weren’t worth posting. But the great thing about this being MY 365 project is that I make the rules up as I go along.

Today, I edited one of my sister’s incredible photos from her trip to South Africa. She went on a 3-day safari and saw some amazing sights. I asked her if I could edit a couple of her images so she could have them put onto canvas or into a book, and she said yes!

I knew from the moment I saw this image exactly what I wanted to do. I created a mother and baby photo, with a little help from photoshop. And I love the end result!

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OMG!!! I want to go on an African safari!! Here’s another photo that Jasmyn took!! Yes, I edited it for her, but OMG!!!


Day 6

“I never really thought about how when I look at the moon, it’s the same moon as Shakespeare and Marie Antoinette and George Washington and Cleopatra looked at.”
― Susan Beth Pfeffer, Life As We Knew It

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Day 7

Because being a kid is thirsty work . . .

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Day 8

The cure for anything is salt water: sweat, tears or the sea.
~ Isak Dinesen

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Day 9

He told me this week he doesn’t like his life. As tears streamed down his face, he confided in me how unhappy he is.

Here we are, week 4 of the school holidays and he hasn’t heard from a single friend. It’s been like this ever since we arrived back in Australia. A few weeks ago, he secretly grabbed his dad’s phone and sent his “best friend” a message, asking if he’d like to come over. He said yes. His dad dropped him over, and remarked how awesome it was that he and his wife were able to have a child-free night (I have no idea what a child-free night is, but I digress). James had a lovely time with his friend, and then by 8am the next morning he was gone. And James hasn’t heard a single thing since.

I don’t know about other Duchenne families, but it always seems to be us making the effort and not the other way around. No one ever goes out of their way to see if James would like to hang out. Not one single friend. Ever. The last time James was asked to a friend’s place was way back in England, in 2009 or maybe 2010, when his best friend Taylor asked him over for the afternoon. It was one of the best days of his life – the smile on his face after that playdate is something that I will never forget. And Taylor’s mum and I have have remained friends ever since. But that was the one and only time he’s ever been asked to a friend’s place. He’s going into year 5 now. My daughter hangs out with her best friend pretty much every week, they spend many happy hours together. But not James. He sits alone.

We try to make him happy. We try to organise outings, but where do you take a boy who can barely walk, and who is now losing the use of his arms? A boy who can’t even do Lego for very long because it tires him out? A boy who gets tired even sitting on a sofa and has to lie down? We can take him for lunch, we can take him for long drives, we can take him to the movies. But there’s not many other places we can take him. The beach? No longer an option. A park? So he can just sit there and watch everyone else have fun? I hate doing that to him.

The only thing he can do is take him to lunch/dinner, watch TV, play xBox, or use his iPad. He can’t even hold a book as his hands and arms are getting too weak. He sits there, playing alone like in the photo. Every now and then, a sibling will join him, but he gets angry with them. He gets angry because, yet again, he is forced to acknowledge the fact he has no friends and has to play with his siblings who are 4-5 years younger than him. He can’t talk to them about history or geography or anything else that interests him. And he gets both angry and jealous when he watches them go off and play like kids play, leaving him to play xbox. Alone. Again.

He hates his life. He hates that he can’t run, or kick a ball, or play cricket anymore. He hates that he can’t jump in the pool, or stand on a surfboard, or ride his beloved bike. He hates that he needs help to get off the sofa, or to walk up the two stairs at the movie cinema (he likes the higher seats). He hates that he can’t stand in the kitchen and watch me cook, and learn how to make the meals he loves. He hates that the only real interaction he can have with other kids is on Xbox, where they are at least equal. But who knows how long that will last. Eventually, he won’t even be able to do that. Eventually, he won’t be able to move at all. And I think he is coming to realise that.

And that’s why he hates his life. Because he can’t be a normal little boy. That’s all he wants to be. So why did life have to be so unfair to him?

He hates his life. Really hates it. And that tears my heart to shreds, because I can’t help him. I can’t be the friend he craves, I can’t be the person he confides in. He blames me. He blames his dad. He is angry with us all the time. My beautiful boy, the one that made me a mother and gave me more joy than I could ever have imagined. He’s angry because we can’t help him. He’s angry because he doesn’t know what is happening to him and why.

And he hates his life.

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Day 10

A child with Duchenne has arms and legs that feel like lead. The older they get, the harder it is to move as the muscles continue to waste away. So you can imagine that swimming one lap of a 50m pool is no easy feat. How about FIVE laps of a 50m pool?? That’s what James did – five laps. That kid, he puts most people to shame with his determination. He is the strongest kid I know. And I love him to bits.

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I think my husband is training for Gold Coast 2018. Or not.


And lastly, is anyone else’s child obsessed with these? TY Beanie Boos. And if they aren’t, then make sure you stay away – because they SUCK YOU IN!!!

IMG_2338facebookAnd that’s another week gone. With only two more weeks of school holidays, I’m sure I’ll have plenty more to share next week. Until then, don’t forget to follow the circle, starting with my dear friend (and very talented photographer) Julie Moses. And don’t forget to check in again next week! xx

  • Ivy - Dear Sharyn,

    I hear you about the issues surrounding friendship with Duchenne. My son doesn’t get invited either and it’s a pity. But what I’m hearing you saying sounds to me like something much more. Hating one’s life, even when one has a profound disability like Duchenne, is not normal. It sounds to me like clinical depression, which is common in families with Duchenne, and which is very treatable through psychotherapy. It might be worth a try. When depression is sucking all of the pleasure out of life it can feel impossible to do things that make life worth living. But many, many people with Duchenne are living productive, interesting, happy lives. They’re playing on power soccer teams, they’re writing books, they’re making movies, they’re traveling the world, they’re joining fraternities, they’re attending university, they’re volunteering at charities like soup kitchens, they’re tutoring younger students. We even know of a man with Duchenne in our state who is the dispatcher for the fire department. It is possible.

    Wishing you and your family the best of luck!

  • Ally - It breaks my heart about your son. I wish I could come give him a big giant hug and tell him how awesome he is. His swimming skills are amazing!!ReplyCancel

  • Looking for a FANTASTIC Killeen Photographer?Maternity Newborn Baby Child Family Killeen Temple Belton Harker Heights Central Texas Photographer - […] for more 365 fun?  Check out my fellow “and then we snapped” friend Sharyn.  I just love getting a peek at her side of the world and I know you will […]ReplyCancel

  • Cynthia - Sharyn, your images move me so much. I’m sending James so much love. <3ReplyCancel

  • Alyssa - This broke my heart. He seems like an amazing person. If only you lived closer, because my younger brother would love hanging out with him. The only thing he does is play xbox. They would get along perfectly. 🙂 I would play with him, but I’m a grown woman, and I’m sure he doesn’t want me to play xbox with him (I scream like a little girl when I kill zombies, my brother and husband laugh at me!) I hope he finds a friend and finds a joy in his life to live for. Besides, he can at least brag about his awesome swimming skills, better than me! Keep it up bud, and keep a smile on your face! <3ReplyCancel


Happy New Year! Welcome to 2015!!! And welcome to my third year of Project 365.

I don’t know about you, but as much as I love the holiday season I’m glad it’s over. Now we can have some fun, and not worry about things being closed due to holidays, or worry about having so many social engagements. The last two months of 2014 were so busy!!

This week, we had our new year celebrations up in Surfers Paradise, with a picnic in the park followed by fireworks on the beach. Now that’s something we could never have done if we still lived in England. Speaking of England, my sister is visiting. She moved back to Australia from London, arriving on Boxing Day. She came up on Monday and we love having her here with us. And I’ve missed her terribly – she’s one of my best friends.

Anyway, here is the week that was.

Seeing in the new year from the sand dunes at Surfers Paradise.


Charlyse, engrossed at the movies – we’ve seen so many movies already these holidays. And, with 3 more weeks to go, there’s still plenty of movies to see.


January 1

Here we go again, another year of daily photos. I can’t believe I managed to do this for two whole years, and am embarking on my third. Many people ask how I can keep it going, but the truth is I don’t set strict rules, I keep it flexible. If I miss a day (or three) here or there, it’s no big deal. I always take enough images to fill those gaps if I want to. The hardest part is keeping up the commentary, which I will try to do again this year, but there are days where i will just post and think “That’ll do!” and write nothing. And that’s okay.

So here we are, day 1. I liked this photo, it’s quite a good photo to start off the year. Here’s Paddy, peeking around the corner to see what 2015 has in store for him. We’ve had a rough couple of years, particularly with James getting older and watching him deteriorate in front of our eyes, and I know that won’t get easier this year. However, I’m determined to make this year even more amazing than ever for him, and our other 3 children. With time against us, it’s important to see and do as much as we can, and already I’m planning some fantastic things to do over the next twelve months, things that will create awesome photo opportunities – of course!!

So take a seat, make yourselves comfortable, and welcome to my ride!!


We went to the pirate park, so of course he wanted to go as a pirate.


January 2

She is my third child. But she has the middle child syndrome. She can be so difficult, always comparing herself to her older sister, who has long blonde hair and blue eyes and is tall & slim. Saraya will never be tall and slim like her sister, or have blue eyes. But I’m trying to help her see that she is an incredible beauty all to herself and, more importantly, a unique one.

I grew up with a sister who continually tried to compete with me, who felt she lived in my shadow. Our relationship was strained for most of our childhood and continued into adulthood. And because of that, I haven’t spoken to her in over 4 years. I probably never will again. But I don’t want this to happen with my girls. So I point out Saraya’s gorgeous hazel green eyes, her beautiful coloured hair, her incredibly wicked sense of humour, her kind heart, and her inquisitive & brilliant mind. She’s not like her older sister. She’s different. And that’s how each child should be – different, individual, independent, unique.

She used to frustrate me, and she still does most days. But that’s only because she still feels “left out”, and that’s felt even more having a brother with a chronic illness. They are all left out in some respect, and no more than James. And so I make a concerted effort, to let them all feel special and loved and unique. But I have to make more of an effort with Saraya. She’s the one who seems to feel it the most.

But just look at her – she’s beautiful. She’s amazing. She’s special. In exactly the same way that her siblings are, but also in a different way. I just hope one day she truly realises that, and embraces it. And in the meantime, I’ll just keep reminding her of that fact.


Mummy, Mummy, take a photo of me!!!

Well, okay then . . .


A couple of Saraya from New Years Day, in an effort to prove to her how pretty she is. She asked for each of these images, and then said “can you please edit them mummy, so I can see them?” And, of course, I did just that.



January 3

It was supposed to be a movie day, we were off to see Night at the Museum 3. The kids were excited, even I was excited (I love those movies – I’m such a big kid!) But alas, when we went to pick up our movie tickets from the counter, the seat I had left vacant in the middle of the four purchased tickets had been taken. I had left a seat vacant so I could arrange a Companion Card ticket, as I was accompanying my wheelchair-bound son. They could only be arranged at the counter, in person. And when I got there, the seat had been sold.

We cancelled our tickets and had our money refunded. But the kids were disappointed. So I took them to Zaraffas, a nearby coffee shop. And I unashamedly ordered them each a frappuccino (non-coffee, of course). I sat them at a table, and then took a seat at the table behind them. I left them to drink and chat amongst themselves, whilst I just watched them. They had fun. They laughed, the talked, they drank their fraps, and they all got brain-freeze, which they then laughed about. So my mummy-fail wasn’t a total fail. And the best thing is, we’ll go and see the movie later on in the week. Everyone ends up being a winner.



So now the fun starts. No more making teachers’ presents, no more Xmas concerts, no more parties, no more Xmas shopping or wrapping. No more hiding gifts around the house. Now we can be on holidays, and do things as a family. It should give me plenty of photo opportunities, I hope. So please come back next week and check in to see what we’ve been up to. In the meantime, you know the deal – follow the link to see what my incredibly talented friend Julie Moses has been up to.

  • Jana - Gorgeous week Sharyn! And congrats on your sister’s move back – how exciting for you to be together again!ReplyCancel

  • Cynthia - What a beautiful week! I love how you framed your subjects. How creative!ReplyCancel

  • Kari - Beautiful captures! Saraya is beautiful.ReplyCancel

  • Erica - Such a beautiful week, Sharyn! Love, love the movie theater photo- so cool how just her face is illuminated!ReplyCancel

  • Sarah - love the fun you had with the different light this week.ReplyCancel



And . . . . . . BREATHE.

So Santa Claus has been and gone. Presents have been wrapped, only to be ripped open by excited children. Their gifts sit in piles around the house, waiting to find their new homes. Santa is no doubt sitting on a beach somewhere warm and tropical sipping on a daiquiri and enjoying some much needed R&R with Mrs Claus. Copious amounts of food and drink have been consumed, and the dieting will begin next week. Families have come together to celebrated (& argue), like many families do in the christmas season. Christmas is over. Another year down. And even though it’s my favourite time of the year, it’s also the most exhausting. I need a holiday.

Our Christmas was lovely. Rather quiet, but lovely nonetheless. Apparently Santa did a good job this year. That’s good to know. He’ll be happy to know he did well. And I tried to take as many photos as possible, showing the joy that was felt by everyone. So this week, rather than a shot a day, I’m showing you photos from the 24 hours that belonged to Christmas.

‘Twas the night before Christmas and all through the house, not a creature was stirring, not even a mouse . . .


Let the unwrapping begin . . .


TY Beanie Boos were mostly on their christmas lists this year, and Santa didn’t disappoint . . .


One of his favourite christmas pressies . . . and it’s something the whole family can play together. Family Feud doesn’t discriminate against Duchenne.


Presents are left lying exactly where they were unwrapped . . .


Busy, mum! I’m busy unwrapping . . .


OMG!!! OMG!!! OMG!!! It’s the George Foreman Mix’n’Go. PRO!!! That’s totes awse!!!! I’m, like, so excited!!


I think he’s a wee bit excited about the family getting a SodaStream from Santa Claus.


He really only asked for one thing. Just one. And he got it. One of those damn Skylanders games! I’m not a fan of video games in general, hate them in fact. But he loves it!


Because didn’t everyone’s house look like a bomb had hit it in the aftermath of Christmas morning?


The TY Beanie Boos are taking over! 42 and counting . . .


My Secret Santa present from one of my photographer friends . . .


Today, I am thankful that Santa was able to find the perfect present for Saraya. When Saraya was born, we gave her a teddy. It wasn’t anything special, but it became her favourite. SeeSee was her name (or CC). Saraya has taken her everywhere ever since, for almost 7 years. Poor CC now looks very worn, very old, quite threadbare. I searched for years, trying to find an extra CC if, god forbid, anything ever happened to her. And my searches were without luck. But this year, Santa did something wonderful – he found another CC. And even though she will never replace the original CC, just knowing that there is another one is enough. Here is the moment that Saraya unwrapped her. I’m so glad I got to photograph this, the joy on her face is just beautiful.

Saraya CC

She loves them both equally.


And there you have it, Christmas in my house. The wrapping began at 7.00am and it was finished by 7.12am.  And then it was over. Another year. They go by so fast, don’t you think?

With 2015 upon us, it’s time to think about what I want for myself and my family for next year. It’s time to make plans and set goals. Only 26 more hours until we can all “start again”. I’ll be back next year, so in the meantime – HAVE A HAPPY NEW YEAR!!!

And don’t forget to follow the circle. Click on the link to see what the always talented Jana from Photography2204 has been up to.

See you in 2015.

  • Jenny wilkerson - I love how you documented christmas! So beautiful!ReplyCancel

  • Jana - Oh Sharyn, I love getting a peek at your Christmas and seeing the excitement on your kids’ faces <3 Beautiful!!!ReplyCancel