Friday, 28 June 2013

Luke got up before all of us this morning. When Jayden woke with his usual smile he noticed Luke wasn't in his bed and trotted off by himself to find him. He's never ever got out of bed before without me, always insists I come too and won't even go with dad if dad wants to let me have a sleep in. I don't mind of course as I love getting up with my little man and having our cup of tea together on the couch. But today he trotted off on his own.

I must have gone back to sleep for a little while and when I woke to see him gone I panicked a little however I knew he would most definitely be wherever Luke was. Although sometimes that's not such a good thing. Anyway I walked to the lounge room where I could hear their voices and peered behind the door. There they sat on the couch squeezed up to each other looking through Luke's footy album at all his football cards. I decided not to ruin this moment and went back to bed. I didn't sleep, just laid there thinking about my beautiful boys until I heard them again in the playroom. I got up and saw them squished together next to the heater, all smiles.

Jayden loves his brother so much and follows him around everywhere. I commented on that to Luke and he smiled. "I hope he doesn't die mum", luke said back to me. That certainly pulled the carpet from beneath my feet and I said "me too, darling". You never really know how much your kids understand or what they are thinking. I had no idea until then that Luke thinks about that, I always thought he had thought everything was back to the way it was now. Obviously he is far more switched on than I had imagined. He then asked me. " will he die soon mum? Not until he is big and old, right mum?". How do you answer those questions honestly? Fortunately I don't honestly know the right answer, only the statistics and other people's experiences so I was able to say " I don't know Luke but I hope he doesn't die until he is big and old too". He seemed to be satisfied with that. All the while Jayden was present jumping on his mini trampoline seemingly uninterested in our conversation but I couldn't help but wonder that he was in fact listening. And hoped he understood very little. I know he's been present during a lot of conversations like that in the past in hospital and i wonder how much he takes in or even understands. hopefully very little. i always try not to have them in front of him now though as he gets older because i worry what he understands and don't want to worry him unnecessarily but I think because I was having this one with Luke he didn't really think much of it.

We have had a lovely morning and the boys have been great although a few disagreements have been had. Overall though i know they love the weekends where they can hang out together and no school. hurry up school holidays which are only a week away. sadly we aren't going away these school holidays but it will be so nice to be together anyway.
Have to think of some things to do for day visits.

This morning has been a good start to the weekend. Happy faces, happy kids, hope I get a lifetime of these days with my two boys together.



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Thursday, 27 June 2013

My little man sound asleep after gymbaroo today.



Love this little munchkin.
He was so good at Gymbaroo today, he just loves it. It gives me such a high of happiness to see him so happy and doing things three year olds do. Climbing, playing, singing, just wonderful.
Trying to stay in that moment and be so grateful to have it.


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Another day

Jayden fell asleep within seconds of turning the light off tonight. He was so very tired. I'm not sure why though as he did less today than the day before but a lot more tired today. I hope he's ok.

I took him to our local GP today as he's still got his cold and is coughing a lot at night. It's been really worrying Danny and I as it seems to be getting worse rather than better.

The GP however said it looked to him like a virus so no antibiotics necessary. I was very relieved as I definitely wanted to avoid any more antibiotics in his system. He has already had a lifetimes supply of those and every type imaginable.

I really like the GP we see now. He's got to know us all well and knows everything about Jayden. He's the person who put me on to the psychologist I see now and I'm very grateful. She's been really helpful and it's been a good thing to be able to release all my emotions, thoughts and fears every Wednesday with her. It has definitely made a difference, even if just a small one to my life.

I know everything wont be fixed with a few visits to a psychologist but it certainly gives me understanding and a place to safely vent without feeling as though I'm burdening anyone. A good thing for me to do.

Jayden had a good day today, he spent it at home hanging out with us and the afternoon he visited our beautiful Italian neighbour. I really love her. She's known me since I was 12 and been our neighbour all that time, just a beautiful person. Jayden loves going to see her and she has so much time for him. She's not very well as she has a heart condition but when she sees Jayden she lights up, and you would never know she was ill. She just loves him. Her husband too. They love him so much that they too are effected deeply by his condition and fear the future. When we talk about Jayden her husband gets very upset and can't discuss Jayden's condition. When they came to see him in hospital her husband would have to walk out of the room because he would cry. Eventually he just couldn't come, they are so overwhelmed with emotion every time they are with Jayden and you still see a tear in her husbands eyes when he looks at Jayden sometimes. beautiful man, beautiful couple. very lucky to have them as neighbours.

It's late now and everyone is asleep and as always I'm left to my thoughts and own company. Both of which aren't much fun but at least I'm not crying into my pillow. Well not yet anyway, and hopefully not later either.

I spend a lot of my time during each day thinking, as much as I try not too, I do. Everything I see and do makes me think of our life now. the eyes I see through now are very different to those I did before. Everything is different and I often feel like I'm living in a world within this world. A totally different one from the one before childhood cancer touched our lives. It's sad and lonely often and the most comfortable I am is around other people living in this world of childhood cancer too. Because it really is like nothing of our previous normal life. Like a round ball into a square hole, it just doesn't work. Its difficult. So i get about my life trying to manoeuvre through that square hole and live as normal a life as possible but inside really just wanting to scream and cry and wish this whole damn nightmare away. But It's not going anywhere and i just have to learn somehow to live with that.

I look at my boy everyday and feel so blessed to have him with me. To be in his company, hear him speak, laugh and watch him smile. To cuddle him when he's crying and to just cuddle him for cuddles sake. It's truly a blessing. I know everyday is a gift, i try to find a place in my mind to have real acceptance of that but whenever i go there it makes me So very sad. i really wish that all my love and appreciation for my little man could be bottled up and given to him as a cure, for i have bucket loads to give.




Having a "I'm not smiling for you", day again today.


My little rascal. I can never truly put words to how very much I love him for words alone are just not enough.

Tuesday, 25 June 2013

Tuesday

My little man had a great day today, starting with spending the morning at Playgroup. straight after the kids went to school Jayden and i headed out to the Telethon Speech and Hearing centre for his playgroup session. beautiful people, beautiful centre and Jayden was really feeling comfortable there today. its his third time he has been and he was clearly getting into it. he did heaps of artwork and lots of playing. Was really beautiful to see. So proud of him.



Just as to be expected he fell asleep on the way home. When he awoke though he was really miserable and his right eye looked as if it was closed a little more than the left. As per usual, inside I was panicking. The level of anxiety that I'm constantly at is so crap it's awful. That constant fear when something looks not right or even just feels not right and I'm worried senseless. I tried not to and later it all seemed fine.

He is in good spirits as always and every day a little more of his personality comes out. Lately I'm finding it almost impossible to take a photo of him as he refuses to smile but instead make silly faces, rascal. I have to say though, I love them just as much as his personality just shines in them.















Just love my little rascal.

Monday, 24 June 2013

Hospital visit

"Why we going to hospital?" Jayden asks as he sits nervously in the back of the car, early this morning. I tell him not too worry as we are just going for a quick check up. I can see in his face that he's not entirely convinced and still feeling anxious going back there. I actually wasn't sure what was going to happen at the visit either, only i knew it was to do with the flu trial and I needed to sign some forms. however i did have a very strong feeling it was for another blood test also as i recalled they had mentioned it before. i was just hoping i had recalled incorrectly and I certainly didn't want to reveal it to him.

So we headed in. That dreadful journey that every time I make, brings back so many very sad memories. The memories of a time I wish I could forget but it's part of my life now. As I drive I remember the feelings during that time and I shiver. I look in the rear view mirror and see Jayden looking out the window with a worried look on his face. I'm hoping he isn't being reminded of those times as well.

We find a parking space easily which is unusual but great so we aren't running late and hoping the nurse we are required to see isn't either. We walk through the car park, up the ramp and into the hospital. Jayden chooses to walk not sit in his pram, i think it makes him feel likes he's more in control. whatever makes him more comfortable.
We reach the lifts, push the down button and wait. Its about now that Jayden is clearly feeling uncomfortable and uneasy and asks me to carry him. I pick him up and hold him tight and wish we never entered this hospital over twelve months ago. That he never got sick and we were back where we were before this nightmare began and a visit to PMH wasn't normal for us.

We go down to 3b, (the basement or bottom of all bottom floors) and walk through the doors. Our nurse is there and it's sadly really nice to see her face. Sad because the reason we know her so well is awful and nice because she is now a friend and a dear one at that. Like her a lot.

Jayden goes off to play with the kitchenette in the waiting room as we chat about the study and what's next. A slightly uncomfortable chat as we talked about Jayden's prognosis. I never walk away from a conversation with a medical professional, uplifted or feeling the least bit positive when Jayden and his prognosis is talked about. Never do I get a "it's going to be ok", "alls going to be fine", "don't you worry about a thing". Never, and what I wouldn't give to have that conversation that did have those sentences in it. This really sucks.

Shortly after the forms are talked through and I've answered the necessary questions she tells me Jayden needs another blood test. Of course. I look over to him and I feel like shit because I never warned him as I was too chicken too. I didn't want to upset him and of course, that's inevitable.

We leave the ward and head to the place where he will have his blood taken. Sadly it's also the same way that we go to the car park so for a moment Jayden gets a false impression that nothing is going to happen and he's going home. I tell him as we approach the room that we are going this way and, he knows. He comes in with me but immediately asks to go home. I know it's going to be ok and quick though as these women are amazing but it doesn't stop me feeling like crap every time we have to do this and we have done it a LOT of times.

They call us up straight away so no waiting and stressing too much and we head in. By now Jayden is really tense in my arms and crying as we walk through the door into the room. The lady doing it today is wonderful, they all are and knows exactly what to say to calm him down. We sit down, Jayden on my lap and wait for the second lady who assists to come in. A Few seconds pass, in she comes, together with one holding his arm and the other putting the needle in and taking the blood and they make the process quick. He's on my lap the whole time, lets out a big cry when the needle enters and continues to cry until its out and we have left the room. He still manages to pick out some stickers before we leave , in between sniffles. Brave little man, truly he is. I love those women there, they manage to make a dreadful situation a lot better than it could be, and we know that from experience. they really are professionals.

Finally we get to leave and stop off to grab a bite to eat and drink on the way home. He's feeling much happier and even more so when he finds out we are now going to visit our favourite neighbour whom sadly isn't our neighbour anymore.

The rest of the day is spent doing the things he enjoys and the morning is quickly forgotten about. For now. I don't think anything my son has been through will I ever truly forget nor him. Etched into my memory every single procedure, treatment, examination, MRI, Ct scan all encompassed into a file labelled "nightmare". I hope that he does though. I hope he has the ability to wipe his mind clean after every awful experience and not relive it every night in bed.

The next time we are due to go into PMH is the 18th of July for his next MRI. Just under four weeks away. As each day we get closer I increasingly get more nervous. The longest few weeks ever.
But all I can do is Hope with all my might that it will be fine. That he will be fine. That no matter what the medical professionals say or think, he will defy the odds. God, I hope with all my might and every inch of my being that he does.

My beautiful little man.
He touches our hearts in so many ways each and every day. Makes us smile, laugh and feel so very blessed just to be in his company. He cracks us up at the dinner table with his incredibly cheeky sense of humour, is always the first one to tell us "what his favourite thing for today was", something we do every night at dinner. He wakes with a smile, goes to bed with a smile, always tells me he loves me before he closes his eyes at night and gives the best cuddles ever.
I couldn't live without that. The special pieces of him that makes him the beautiful little man that he is. The thought of it makes me crumble inside and ache with a pain so great that I truly don't know how a mother does live through such a devastating loss.

I'm sitting in my hallway again, not sleeping. Wishing I could be thinking of something else but all I can think of is my little man today. He has been through so much, and so much worse than today yet with every single thing that happens to him now it feels huge, bigger somehow. I don't know why. Maybe because I feel I have less resistance now, less emotional energy to get on with it. Or just the very real need for it all to stop and go away. The very real need, want and wish for our lives to be the way they were.







Playing at our other neighbours house, Jenny's.

Sunday, 23 June 2013

Sunday morning, Jayden woke up his happy self. His smile makes me melt and every time I see it I hope I see it on an older boy, a teenager and a man. There are no guarantees in this world, I know that, but I miss the thoughts of the future that were once filled with his and now replaced with the unknown. I miss that.

I went through photos the other day in an attempt to make up a photo book that I bought a voucher for not so long ago. Of course I found the photos of Jayden before he was diagnosed. it never gets easy to look at those photos. the heartache of not having that time is still raw. his beautiful face and innocent smile.
he still has his beautiful smile but it is no longer the innocent little baby he was. he has endured and lived through experiences that most of us wouldn't experience in a lifetime. But he keeps on smiling.

its lunchtime and we are off to meet family for lunch. no time in my life has the importance of family stood out more for me than it has through this experience. I'm so glad we have ours.

It's evening now and I'm sitting in the hallway of our home. I can't sleep and am near where my phone charges. Conveniently I can also hear my kids sleeping. Luke is snoring with his awful cold and he often chats at night which he has been tonight.

I tried to sleep, but nothing. Just my brain racing through thoughts I wish I could erase. A wave of memories rushing in and out of the past and feelings of fear of the future. We had a great day together as a family today and I wish that's what I was thinking about but instead it's my mind going where I wish I could stop it going. I took a sleeping tablet which I hate doing as I always feel awful the next day but its either that or stressing for another couple of hours into the night. Just a matter of time and I will hopefully be wanting to actually sleep.

Some photos of today:



Jayden very happy with his Nanna. Loves his Nanna.




Some special time with his Auntie Heidi.
So lucky to have such a wonderful family.

It really was a beautiful day. The kids were happy which always makes me happy and god how I wish that we get so many more days like this. That we get a lifetime of smiles, cuddles and beautiful memories.

Time to go to sleep, finally.

Friday, 21 June 2013

Layla's home!

The house is back to how it's meant to be with Layla home from camp! So happy to have her home. We all really missed her terribly, her absence was felt by all. It's so nice to have her back in the home. Really am not sure how I'll cope when they grow up and move out. All I can hope for is they actually do get to grow up and take that step. That will be a sad but joyous day.

Had a bit of a cranky day yesterday that was spurred on by being at the school waiting for Layla's bus to arrive. I know I'm really not at that place to stand around and chit chat with other mums and I wish I were. I try but it's not long before I find myself frustrated and angry at the world and know its just better to walk away. It's disappointing as I use to know many of them well to chat too and use to enjoy seeing their faces. Now I just want to hide and avoid any conversation as I just don't feel I have anything to say anymore that would interest them. A simple conversation with two mums talking about their children having their tonsils removed and how they are going to have to go to hospital and i suddenly feel ill and reminded how none of these women have any idea where I'm at. i could have stood there and said "aren't you lucky, if only". but i just chose to go home and wait for the bus from the comfort of my front lawn and in the boundaries of our home that i feel the most safest. sometimes i think i have serious mental issues, but truly this is the only way i can deal with this without yelling at someone or balling my eyes out.

the bus finally arrived and i raced down to see her with luke. so nice to see her little face, love my big girl. i mentioned before that i had a cranky day. I didn't realise how cranky I was until a car beeped us of the road that we were walking on and I found myself hurling abuse at them. Dumb. When they drove off I thought" what on earth was I thinking and where the hell did that come from". It's a sharp realisation that people have so much more going on inside them and we are so quick to judge them if they get cranky, yell, scream whatever. Clearly I do. I felt awful afterwards as that person had every right to beep us as we shouldn't have been on the road. And what a terrible way to behave in front of my kids. God this journey is hard at the most simple moments.

It no doubt doesn't help that I was annoyed before with mums and their trivial stuff that I would love to be those mums. That its so damn frustrating to feel on the outer all the time and no matter how much I try not to be its just the way it is and no running away from it. There are mums out there who do "get it" though and I'm lucky to have found them. The ones that openly say " I know my problems aren't anything like yours, I can't even imagine how your life is and I feel awkward talking about my trivial stuff", kind women who i now have as friends.

It's Saturday morning and all my kids are home, playing and just hanging out. Love being in their company and what a difference it is to have Layla back.




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Wednesday, 19 June 2013

Ambiguous grief

I woke early this morning, before my boys which is very unusual. I laid there watching my little man sleeping. His little face twitching in sinc with his dreams and his eyes, closed and moving underneath his eyelids. It's so nice to hear him breathing a little clearer than he has been and I hope that means he is finally at the end of this virus. My other little man however is not and its just begun for him so he's struggling. But give me a cold or flu any day over what we've been exposed to as a family. A broken leg, a nasty graze, tonsillitis, anything over cancer. What I wouldn't have given for the hospital to have given us a simple diagnosis such as those in March last year and sent us home.
Obviously that wasn't to be the case but every time I hear of someone going to the emergency department and then being sent home with their child with something simple I have a huge twinge of envy. I'm happy for them, obviously, but so wish it had of been us. People often tell me their stories of their time at PMH in an attempt to let me know they had a small idea of what it must have been like for us but that they couldn't imagine what it would be like to have our diagnosis. I appreciate their efforts, no doubt about that. Efforts to try to understand our situation and in a big way glad they can't understand it as its not a nice place to be.

I feel like I'm dribbling on now and often wonder why I'm writing this blog still. I know it's a useful way for me to vent and a resource that has put me in contact with many mothers living this same nightmare not to mention the wonderful people who I've met and the amazing support we have received.

Lately though I've been trying really hard to focus on Jayden and us like I normally would but my thoughts are with Harvey's mum as well. No matter what I write it feels unfair. That she no longer can write about her son and I can. That it must be crushing for her to get up in the morning let alone get through the day. I struggle, and my son is with me.

I know that life goes on as it has too and I remember how harsh that reality was after my mum passed so i cannot even imagine what that reality is for her or for any mother who loses their child.
That everything continues as per normal for everyone and yours has stopped, suddenly changed so dramatically and so finally. I think of her and I'm so sad for her and so very scared of being in her shoes.

Everyday I'm aware of how lucky I am to get that day with my son, with all my children and I appreciate it to no end. Every parent who goes through this knows that. They know that life is precious, every second of it and they know that bad things happen. When I said goodbye to my daughter as she left for camp on Monday I found myself really anxious about her leaving, even asking the teacher to be sure to take care of her and having an incredible urge to grab him by the arms and shake the words into him. I felt really worried something bad might happen and I had to talk myself out of the scared thoughts I was allowing to enter my mind. But I can't help but feel sometimes because I know bad things happen , that a bad thing could happen again. If I wasn't already overprotective of my children before this nightmare I am now officially 100 times worse.

So I'm thinking of my friend as I have been a lot and truly wish things were different. I hate that this happens to families and I hate the thought of mothers out there suffering from the loss of their child. I hate it because I know how much it hurts just the thought of it. It's truly not fair.

I went to my psychologist today, it's the second time I've been. I like her. Finally someone I can truly feel comfortable with. The first visit I spent the majority of it crying, like I had an enormous amount of stuff to get out. This time I was able to speak more and cry a little less. I know it's not a quick fix, nothing is and I feel like I shouldn't be so damn scared, worried, sad and overwhelmed when my friend has so much more to deal with.

I know my feelings are real and validated but so often I feel like a nutcase. That I should be coping better that surely by now I would have found someway to deal with this new "normal" that we live.

When I spoke with the woman today I asked her this very question. She said to me that I am grieving, that there is a term for it and that my grief is known as Ambiguous grief. Its similar to post traumatic stress disorder i read on the internet but treated differently. She said "you are grieving for the loss of so many things in your life. The health of your son, the future you once had for him, the future you once had for your family, your dreams, and the life your family once had". I said "but it feels like there is no end to it". She said "that's because there isn't, there is no end and everything you are feeling is normal and healthy. you are doing the right things, Leisl".
I sat there with tears in my eyes and was weirdly relieved to have a term put to my madness. It didn't take it away but at least now I know it's normal and its ok. Of course I know that i have valid reasons to feel so sad and scared and many mothers in my shoes have told me that they feel the same way but it was good to hear a term for it and that it was "normal".
she went on to say " this type of grief has no end but if you were to lose your son and I'm not saying that wont be extremely painful and far worse than the feelings you have now but with time, a long time, there would be an end to that type of grief, closure."

So now I sit here thinking about my friend, her grief, that I know without being told today, how devastatingly painful that must be. My greatest fear. And i know that the pain i feel today, may be hard, that the knowledge of the possibility of losing my son is devastating but for her she is living it. She may get closure one day and even that I doubt, as i don't see how a mother could live long enough to overcome the loss of her child. I wish that I could change it for all of us. That we never had to travel this journey and know that in order to reach the end of it, is to enter a world of pain. It's so very wrong.

Monday, 17 June 2013

School camp

I said goodbye to my daughter this morning as she headed off to her first school camp. She will be gone for four nights and five days and I'm already missing her. I know the boys will miss her terribly too and I think this will be the longest week ever.

Jayden still has his cold/flu and this morning Luke woke up feeling unwell too. Slowly taking its toll on all the family members. He still manages to smile though. Precious. Although he wasn't himself for most of the day which worried me heaps among other things.



Today i noticed Jayden walking funny at my friends place and he said his foot was sore. Inside I'm having a panic attack and hoping with all my might that's its something simple as a tiny bit of glass that we can't see. I'm not convinced thats what it was though as i examined it thoroughly and found nothing. It eventually went or he adjusted his walking to compensate the discomfort. I don't know. i just know i panic with the slightest change in his behaviour or appearance. Sometimes when I look at him in the rear view mirror as I drive I think I see one of his eyes look like its drooping. Then i think I'm just imagining it. crazy stuff. Constantly looking at him through my mum microscope, driven by stress and fear.

Its hours later and everyone is asleep. my daughter isn't sitting up with me as she normally would be and i miss her. She didn't get to watch 'house rules' with me tonight and it wasn't as near as good to watch without her. Looking forward to her return.
We all are.




Sunday, 16 June 2013

The happy faces that keep me going throughout the day ....




Jayden in his zebra pjs


Luke and Jayden being 'cool'


Luke,Jayden and Layla in the football jerseys sent to us by a beautiful lady from Sweden. Thank you so much.






And the sock monkey that was in there too, Jayden just loves it, as well as his hat. Pure joy. Funny story though, he insists I wear the hat every morning. Puts a big smile on his face.


Precious. Thank you for these moments.


Friday, 14 June 2013

A very sad day

It's late, I'm not sure what woke me up but I'm thinking it was Jayden thrashing about. He's not been sleeping well lately and neither have I and I'm hoping its just the cold he and I both have at the moment. It's definitely taking the last drop of energy out of me lately and I'm really struggling with that as well as everything else.

So I've woken and can't get back to sleep. Not unusual but annoying all the same. My mind is on today and the events that took place.

I've tried to write this entry so many times and deleted it every time as I can't seem to find the right words to truly describe how tragic it is to go to the funeral of a little boy that had the same condition as Jayden and was once our inspiration and hope. He was such a beautiful little man and when we saw him while Jayden was in hospital we would look at him and think "I hope our son gets to be where he is". I still remember the day his mother phoned us to tell us the very sad news that he had relapsed. Gutted. Cannot even begin to imagine how she must have felt.

He continued to fight but sadly A tragic turn of events would occur and I was now attending his funeral. Gut wrenching, heartbreaking and so very sad and again, I cannot even begin to imagine what his beautiful mother is feeling.

A strong and wonderful lady who
I've always admired and even more so, if that's possible, when I saw her today.

There are no words to truly describe how tragic today was. It makes no sense, it never will and my heart breaks for this beautiful family.

Amongst the people that were attending were women who had lost their children to this disgusting disease and other mothers with children with cancer. I met some who I had been in contact with over the Internet but I had never met face to face. Beautiful women, no words can describe how truly inspirational, kind and just wonderfully caring these women are.

I stood there watching them all at seperate times as we waited to go into the chapel and thought how tragic it is so many mums are dealing with this day in and day out. its not until you enter this world do you realise the magnitude of it. How many families there are out there and how many children are fighting this horrific disease. Too many.

Each of us have our own story to tell and each equally tragic. No cancer is a "good one" particularly when you are talking about your child. Some may have a better prognosis but they are all crap and the feelings and emotions attached to this journey are the same. Sadness that your child has this disease, fear of the unknown future, anger-why my child and confusion as to how to live this "new normal" life after treatment ends. And now at this funeral the feeling of utter despair is amongst us all, no more so than the beautiful mother and family of this most precious little boy. None of it makes sense. And as most of us try to make sense of our life with childhood cancer this mother now has to make sense of a life without her son because of it.

So I lay here watching my son sleeping and the fear of losing him is so overwhelming and none more so than when i stood at this funeral today. and i wish this mother was watching her son near her too. i wish she was still holding him in her arms and i wish she had a lifetime of cuddles with him. Like all the mothers there today and all over the world I wish the same. For I know, we know, the agonising pain of having a child diagnosed with Cancer and the very real fear of losing them to it.

Little Harvey was a true treasure to this world and I know each and everyone of us there today will never forget his beautiful face, he's wonderful smile and he's heroic fight.

We live and breathe it everyday and our hearts ache to know another mother has lost their child to this utterly shit disease. The feelings of 'who will be next' are overwhelming and the thought of it continuing is truly devastating. No mother should have to bury their child, no mother should have to feel that pain. And in this modern day no excuses are good enough as to why there is no cure.




- Posted using BlogPress from my iPhone

Tuesday, 11 June 2013

At what point do you know you have really lost the plot emotionally? When you feel like your operating on auto pilot because there's no energy for anything else and what you really want to do is collapse in a heap?
At what point do you know it's all gone to far.

If I knew those answers I'd know where I was at, but I don't and I certainly don't know how much more I am able to sustain. One minute I think I'm doing ok and the next I've done a total 180 and gone back down hill. I'm not even sure if I'm making any sense anymore and god knows my life has ceased to.

I went to the doctors yesterday who asked me a lot of questions that again I felt I couldn't articulate my answers properly but if he just asked me to explain how I feel most of the time I would have said, barely hanging in there. I thought with time I would feel better. I thought with time I'd get use to this life and I thought with time I would get some peace with everything. But instead with time I feel worse, crazier, mentally exhausted and desperately in need of time out from all of this. The thread that keeps me together feels thinner and thinner everyday And come every afternoon I feel i have nothing left.

My doctors solution was to change antidepressants and has given me a referral to see a clinical psychologist which I was finally able to make an appointment with for tomorrow. But none of this is going to be fixed overnight, which at the moment I wish that to be the case as I really don't feel like I can do much more.

I don't even know how my husband feels anymore because the sheer mention of everything to him and he shuts down. I know him well enough to know when he's not listening and i know he definitely doesn't want to hear what I have to say when it comes to all of this. His coping mechanism is to forget about it all and it will be fine. Mine couldn't be more opposite and how I wish men and women understood each other better. So most days I find myself living a very lonely existence with my only outlet this blog.

Today I was fortunate to have a friend see the obvious when I visited her this afternoon. I really didn't think I was that transparent but to someone as intuitive as her I was. She walked into our house later in the afternoon after i had left hers and I couldn't have been more relieved to see anyone as I was to see her. She had entered at a point where my levels of stress had reached boiling point and the simple task of preparing dinner felt like dragging ten tonnes of wood across a desert plain. When she walked in she instantly began to help. she helped stir the dinner as we talked, wiped the table for me and played with my kids and gave me the hug I so desperately needed before she left. The simplest things seem so hard sometimes and to have a hand like that and an understanding ear was so needed.

I have a beautiful husband, the best kids in the world and I love them so very much. But I spend so much of my days trying so hard to keep it together to enjoy them. So much of my time working at keeping it happy in the house, normal and as memorable as possible. Inside however I'm crumbling. At what point will it stop. At what point will I feel remotely normal again or is this as good as it gets?




A photo of my little man out for lunch with danny and I together, really nice time.


Jayden with his best mate yesterday. Loves her :)


Tonight with his sunnies. He's just so beautiful. Love my kids. :)

Sunday, 9 June 2013

I'm sitting in my kitchen again, everyones asleep in the house. I know I need to sleep as well but sleep just isn't my best friend and so, I'm here instead. It's either this or laying awake in bed tossing and turning and thinking about everything. Everything being the usual stuff but now also of a beautiful family we met through this awful nightmare.

Another beautiful passing of a truly beautiful boy. a true warrior and hero, so bloody tragic. I'm so saddened by having to write these stories in my blog and feeling as if its only a matter of time before its my child I'm writing about, and that nothing bloody changes.
No promise of more money from the government for childhood cancer research so no major break throughs with a cure. Truly, how many children have to die before something changes??

This little boy whom I will name for I want you to google him, find his mothers blog and please send her a message of support. Harvey, Harveythecureageouslion.blogspot.com
He was a beautiful child whom had so much courage and determination to keep on going against all the odds and against everything that was thrown at him. A wonderful mother and family who were with him all the way with the same courage and determination to fight this beast.

I don't even know the right words to write anymore. No words seem powerful enough or strong enough to describe how unfair this is. none of it makes sense and absolutely none of it is fair.

This beautiful little man did nothing to deserve what has happened to him, nothing and nor did his family. It's just so damn sad.

His mother would have to be one of the most inspirational women I have met. We first met her when Jayden had begun his induction chemo and I remember what struck me most about her was how strong and positive she was. She came to visit us in hospital when harvey would have his MRIs and was always an inspiration to us, a way to look forward. I have always been in awe of her strength and ability to move forward no matter what, I can see where her little man got his strength from.

Now I sit here thinking of her as I do many of the women I have met travelling this journey and wish I had a magic wand to change it all for all of us.

If only it were that easy.

If only it were that easy, I know I wish that were my life-easy, and when I say 'easy' I mean childhood cancer free, and I have no doubt this family does too.

Instead the new normal where childhood cancer is in our face every second of everyday and there is no where to hide, exists. That no matter what I do it doesn't go away. I live and breathe it as do all parents with children with cancer and it is no doubt the toughest road We have ever travelled. But this road, this road, has no end.

I'm sitting here and suddenly get a wave of anxiety, a need to burst into tears and cry out for help. Im scared I really am going crazy. that on the outside I'm saying and doing the right things to appear normal but on the inside I'm drowning. it now seems a much harder task to be normal and sometimes i walk away from a conversation and I have no idea what I've said. I am so very scared. I feel like I'm not going to get through this bloody nightmare sometimes and I don't know how the women who lose their children to this f#**ed cancer do. It's so damn messed up. I just hate it.

There are moments where i think I'm coping and doing ok, like last night when we went out with friends but then it seems so short lived. that i wake the next morning right back where i started. I feel crap for talking about my issues when i know another mother is suffering far worse. How i wish i could change it for her, for all of us.
what she is suffering is what I'm afraid of, its what keeps me awake at night and its what fuels my tears and sadness. I have no idea how she will get through her days and i feel for her deeply.

This is the scariest, saddest journey ever and with every passing of every child I feel more anxious. I feel more frustrated with the system, devastated for the families and really damn scared for my son.

I need to sleep, I know that as I can't end this blog. I could rant for ages as I feel like a big bag of emotions but I'm going to try to sleep instead.

Cancer sucks.


Friday, 7 June 2013

Interview

Jayden has a dreadful cold and cough. He spent most of the night coughing and every time he coughed I felt my self get anxious about the possibility of a vomit following. It didn't, and I'm so grateful.

It's Saturday morning and he woke super early as always and smiling, as always. First thing he tells me is he loves me and second is, can we get up. His smile just warms my heart but also makes me sad inside as the thought enters my mind of one day not seeing that smile. I shake it best I can and embrace him in a huge hug and take him into the kitchen where we make pancakes for breakfast.

He and his brother are now outside, all rugged up as its very cold, playing football. Well, Luke's playing football and I think Jayden's just retrieving the ball for him. Either way Jayden is just happy to be with Luke. Love the weekends.

The last few days my anxiety has hit an all time high and I'm really beginning to think if I don't take action soon I'm truly going to go mad. I rang to make an appointment to see a clinical psychologist after I nearly lost it cooking dinner. No one was with me at the time, I was on my own but I seriously felt so stressed I thought i was going to collapse. I had to leave a message as I'm sure she had probably finished work for the day but hopefully I will hear from her come Monday and finally get the ball rolling with some help.

I take antidepressants that are meant to help with anxiety but I feel they are failing me or I need to step them up. Really don't want to do that and hopefully with some counselling I won't have too.

On Thursday I went into a radio station and did an interview to help raise money for PMH, the children's Hospital that treated Jayden. Sadly I think I did a dismal job as my anxiety levels were so high I couldn't concentrate properly on the questions that were asked of me, didn't answer them correctly or with the articulation I would have liked and spent most of the interview crying and making excuses for that. Pathetic. What's worse is I've spent the last few days beating myself up about it when I should be focusing on my little man.

My mate highlighted that to me the other night. I told her I felt I wasted an opportunity that maybe I could have made a difference with. She told me that Jayden is what you are making a difference with and that's what's important. She's right I know that, I just wish my inner emotions got that too. I know my little man will always know he's loved, above all else he knows that. My mission for everyday is for him to know that, feel that and never doubt it. For so long I felt like I failed him in that when I couldn't stop what was happening to him and now I feel like I want and need to make it up to him 100 times over.

Danny and I are going out tonight with another couple who have travelled this journey. It will be the second time we have been out this year which is a record and we are both very much looking forward to seeing this wonderful couple. I will miss Jayden terribly but his Nanna is going to be with him and the kids and he loves that, as they do. So I know he will be fine.

A few glasses of wine is probably just what I need and some time out. Although I know there is really no time out, certainly no time out from my thoughts and emotions. But with everyday I remind myself how lucky I am to have all my children with me, and no matter how anxious and stressed, sad and lonely I feel, I know that today, like yesterday is a blessing.





- Posted using BlogPress from my iPhone

Wednesday, 5 June 2013

An email

I received an email the other day and I haven't stopped thinking about the person who wrote it. It was from a lovely lady from the states who is now living this very same nightmare with her daughter. She began it on the same date as Jayden, only exactly one year later. This year.

I'm pleased she reached out to me and I'm glad through this incredibly awful journey I'm able to help someone to not feel so alone. At least i hope I've done that. i truly feel for her. This journey is so personal and no one truly knows how shockingly heartbreaking it is unless they are living it. I wouldn't even say that I know how she feels exactly because I don't, but I do know what it feels like for me to travel this dreadful journey. How it feels to watch your child suffer and to pray everyday that what you are allowing them to do to your child will save them and prevent you living the most devastating loss imaginable.

Im thinking about this lady and her journey. how One day her life was normal, and the next it's changed forever. Changed so dramatically it's impossible to imagine and you wouldn't want to.

I still to this day struggle with this new "normal" life we live and still grieve for the life we once had. Every morning when I drop my kids off to school I am reminded of what we once had, what every mother I now know with a child with cancer once had. I understand her struggle to come to terms with the loss of our previous life, as I still haven't. Her rage, her sadness, fear, unbelievable dismay. I've said before that when you enter this world of childhood cancer it doesn't stop, you will always know stories of children suffering, parents so sad you cannot put words to their emotions, grief that no parent should have to endure and treatments that no human let alone a child should have to endure.

In her email She told me her story and it bought back so many memories and heartbreak. Every time I think of those early days, when we were living in total disbelief for what has happened to our child I feel emotions so strong and overpowering that I have to shut the thoughts down. At night time when I try to sleep I often get flashbacks of procedures, my sons scared face or hear his cries of those times in my mind and I shudder, try desperately to block them out and think of something else. Even when I'm driving the car or doing a load of washing a thought flashes before me and throws me into a wave of emotions. "Memories never die" I heard a man say recently and he is so correct. those memories we will live with forever. I can only hope with time that they will be replaced or at least pushed aside with a lifetime of happy ones.

It's at night time that I have always struggled the most. When everyone is asleep and I'm awake as always, alone with my thoughts. Now as I sit in our kitchen alone I am thinking about the lady that wrote to me and her beautiful daughter. I'm trying not to think about what she is going through now but I am thinking about her and wishing I could give her some helpful words of wisdom or something that will help her through this. But I know the only words she wants to hear is "everything is going to be okay". Just as she wants to be able to say those words to her daughter and know them to be true. I know they are the words I long to hear. The words I would give my heart and soul to hear."everything is going to be ok". What I wouldn't give to hear them, what I wouldn't give to know that were the case. And what I would t give to be able to say them to my son and know with every inch of my being that they were true.




- Posted using BlogPress from my iPhone

Monday, 3 June 2013

Luke's birthday

It was Luke's birthday yesterday. My eldest boy turned 7. So proud of him. We woke in the morning and all sat on our bed to watch him open his presents. Jayden was so good at allowing him to do that without opening them for him as much as I'm sure he wanted to. Luke made me so proud when he opened his card from us and read it out allowed. He was so chuffed as Layla had written in it and she wrote a beautiful message. love my kids.



We had a party for Luke in the morning with his special mates and then another party with family afterwards. Danny's mum wasn't here for Jayden's birthday so the afternoon was also another party for Jayden.

I had spent the previous few days running around for stuff for the party and gifts for Luke which was really therapeutic. I really enjoyed planning and making and it gave me moments of thinking just about Luke and his needs and wants. Which made a change from constantly thinking about Jayden, although he was never far from my thoughts.
The night and day before the party the kids and i made and designed cupcakes together. luke had a huge say in what he wanted to serve to eat and it was a much needed lovely family time spent all together. I think thats what i missed the most about Jayden's party and although it was truly beautiful people did all that for me, it was equally beautiful to have my kids do it with me for Luke's party.

I did end up caving to Luke's wishes to have a cake bought that would be like Jayden's . I didn't feel like I could not as I'm really aware of Luke feeling like he's not treated the same as Jayden. In a way I believe he is right. I try not to but I know at times, I favour Jayden. I know that I'm far more protective of him, defensive of him and give him a lot more attention than the other two. Part of that is because he's so young but a huge part of that is also this whole difficult situation and life we live now.
So I really didn't want Luke to feel that way on his special day.


We bought a cake, something I have never done before to this scale but the smile on his face when we picked it up To bring it home, made it worth every cent.
He held it on his lap in the car all the way home and never took his eyes of it. Priceless. Sadly we weren't able to get the beautiful lady at Queen of Cakes to make it but we did get a cake made and that was the main thing.

I still got a chance to make a cake though for the afternoon party which we so didn't need as we had so much food left over but it was fun making it.
Layla and I did it together and a lot of laughs and just good times putting it all together. We made an icecream cake and this is what it ended up looking like:



Can't imagine why Luke would rather a bought one???? Well, we liked it, and it tasted yummy!

We also had a go at using the ready rolled icing on our cupcakes and were very proud of our finished products and they tasted yummy. More importantly, Luke loved them and was really proud to hand them out to his friends.



He had a wonderful time but wished it was longer and I'm pretty sure he felt special on his special day. I hope he did.

I often worry that Luke misses out and That I'm missing so many special moments with him because I spend so much time trying to make the most of the time I have with Jayden. It's hard to put words to it accurately, but I feel sometimes while I'm worrying about Jayden my other son is growing up and that I'm missing it. That one day I will regret that. just as I worry I will regret moments with Jayden when I'm worrying about how long I will have with him I worry I'll miss the time with Luke. These same thoughts apply to Layla. Big mess, all in my head and I just don't have the answers. But I so wish that I did.

Everyone had a lovely time at his party including myself. Haven't been able to say that for a long time. The kids were happy, so I was able to relax and I even had a chance to have a glass of wine with my dear friend Milly whom I truly adore. Thanks Milly.

For the morning party Danny and I had the opportunity to meet some lovely parents that we had not met before as they dropped off their kids and picked them up which was really nice. Often feel like we have been in hiding for the last 18 months, which I guess essentially a big part of that we were. It was nice not to be today. Truly lovely people.

Jayden had a blast also and that always makes my day. And when his Nanna arrived in the afternoon, well, he was in his element. Loves his Nanna.
This also meant I could relax a bit and that's when I had a glass of wine or two. Really lovely day.





I hope my beautiful 7 year old son will look back on this day with fond memories, of us all being together and the knowledge that we love him very much. I know I will.

For us since we started this journey we no longer take life for granted, we know how precious it is. That every birthday whether its Jayden's, Luke's or Layla's it is a true gift, just as they are to us. It's a special day that celebrates another precious year that we have been together and a milestone we will be forever grateful for.