Thursday, 30 January 2014


My daughter had her first day at high school today. So very proud. I sat there at the introduction assembly with her and found myself really emotional. the special milestones like today move me to tears as I expect it does to all proud mums. But added to that, is the thoughts of Jayden- will he get to reach this milestone....will I see him go to high school...
Every milestone my older children reach I find myself always thinking back to Jayden and hoping and praying he gets to reach these milestones too. I sat there feeling sad at the thought of that not happening and had to bring my thoughts back to Layla. To the now. So hard to do sometimes.

So to watch my daughter enter high school today moved me emotionally in so many ways. I hope with all my heart I get to witness Jayden doing the same one day. That they all get a chance to live a normal life. I truly hope he is never robbed of that. That none of them are robbed of that.

I rang the hospital this morning after coming home, to get the dates of the next MRI for Jayden. Already thinking about the next one. I can't help it. Desperate to see him clear them all, forever.

I spent the day at home with both my boys today, without my big girl and i really missed her. Hate not having them all together but nice to spend some time with just the boys. They got on really well today as lately they haven't been. I'm really concerned about Luke and how everything has impacted on him. He's acting up a lot and often expresses how much he feels no one loves him as much as Jayden. I bought this up with Dr Nick the other day and he is going to refer us to a doctor at the hospital that specialises in siblings of children diagnosed with cancer. I'm really keen to find out how I can make things better for him.

Today however they were really lovely to each other. Jayden had a terrible fall this evening that left him with a huge egg on his forehead. Of course I panicked and think the worst but Jayden was amazingly calm. We immediately put ice on it and Luke was hovering like a mum around him helping where ever he could. At one point he was laying down with the ice pack on his head and I had to grab something from the kitchen so Luke laid next to him holding the ice pack on Jayden forehead and reassuring him he was going to be ok. Wish I had my camera with me when I walked back in to see This. Just the most precious moment. Siblings. Beautiful. Love my kids to bits.

Later when we were putting Jayden to bed Jayden asked " will it go away when I go to sleep", "yes" answered Luke, "it will be all better in the morning , I promise". Jayden was happy with that and snuggled into bed. I said to Jayden, "you were so brave" and Luke said "yeh! He sure was! He's the bravest person in the WHOLE world".
In our eyes, he sure is.












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- Posted using BlogPress from my iPhone

Wednesday, 29 January 2014

Final results

I took Jayden in for his appointment with dr Nick today to hear the final results from Thursdays MRI. The final report. It was all good. No change. I was so relieved.

I can't truly write how living this life has changed me. For without living it yourself there really aren't words to explain the feelings inside that constantly flick from one emotion to the next and to such extreme degrees. like Living as if your standing on the edge of a cliff face, scared, worried, frightened, as you await news that could make you want to jump. Getting the news that stops you, but still feeling the aftermath of that journey of the waiting. Fragile, like an egg ready to crack. Carrying on with your life for a time , usually quite short then back on that cliff you stand again, stressing, wAiting. Praying, hoping. A constant emotional roller coaster that you never, ever truly get off.

I'm tired. We had good news today and I'm so damn grateful. All I can do is hope with all my heart and every inch of my being that it continues to be that way. And continue to live every moment, every second, with all three of my kids, and appreciate every moment I get. Always hoping and praying I get so many more.


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Sunday, 26 January 2014

my birthday wish

It was my birthday yesterday and thanks to my wonderful hubby and kids it was a really lovely day. Of course it was made extra special knowing Jayden's MRI looks good and hopefully on Wednesday they will confirm that. I'm trying not to get too excited until I see the report and talk to Jayden's oncologist. And of course even then it doesn't stop the worrying.
I wish it all meant he was cured. But i am so very, very grateful that he is ok now. Today and on my birthday.  I will always hope and pray for a lifetime for my little man, I so wish i could have that, for all my kids.

Jayden woke me first thing in the morning on my birthday and we got up to a decorated kitchen and lots of prezzies!
Everyone got up shortly after and i opened my presents, got loads of cuddles and then we all sat out the front for tea! great way to start a day.  The rest of the day in photos......

Above: Jaydens bed hair! i just love it!
Tea and Vegemite on toast, plus cuddles! the best!


Vegemite face!
Birthday cake! Next to a scarey looking knife? Everyone knows what my wish was when I blew out these candles.
Dinner at the park. Takeaway spaghetti!
Layla and Jayden on the playground
US
The kids, with a very reluctant Luke to pose for this photo, so dad helped!

We never went anywhere special for my birthday because everything i need and want in my life is right here under the roof of our home. My family. All I ever wanted in life ever since I was a little girl was to have a family, to be a mum. I never wanted to be anything more than I wanted to be a mum. Im so grateful I got to be a mum. And I'm so very grateful for my three beautiful kids and my wonderful man.

I know i will always have a fabulous birthday when all my kids are happy and well and this birthday they are. I hope with every inch of my being that every birthday I have for the rest of my life is spent with all three of my children, happy and well.

That's My birthday wish and my wish for every day of my life and theirs.

Friday, 24 January 2014

It's Friday night. Yesterday was Jayden's MRI and tomorrow is my birthday. So very grateful that so far we have been told that his MRI appears good. However we have to wait until Wednesday for the full report.
I'm so very grateful I can be celebrating my birthday knowing that he's ok. I wish I knew he was going to be ok forever but I have learnt to be grateful for 'for now'. That today he's ok and when I blow my candles out I will be wishing like I do everyday, that my little man gets to grow old with his siblings. I so wish for that to come true.

MRI day

We woke Thursday morning organised and ready to go. We have done this enough times to know what to pack and where to go. Jayden is use to having to fast and we only need to tell him the night before that he can't have any food or water when he wakes up and he doesn't ask for either the whole time. Amazing really.

This time he was really upset when we were leaving. He didn't want to go. Cried to stay home. When we finally got him in the car the kids said goodbye and he cried his eyes out for them both. Especially Layla. We are most definitely taking her next time.
These school holidays have bought them together so close that most days they are inseparable. He just loves her and she him.

When we got there he cried to not go in. But when we finally arrived inside he was ok to play on the car in the waiting room until we were called in to see the nurse. He wasn't happy to be weighed and have his blood pressure taken by her and kept asking to go home. Back out into the waiting room. He usually has a pre med but the nurse forgot to tell the Anesthetist so by the time they called us back in it was too late for him to have it.

That really worried us. Jayden doesn't get a canular put in first as it's now so difficult to find a vein so they put the mask on first (the gas). He still gets stressed but with a pre Med it seems to take the edge off.

Without it he was not relaxed at all. I took him in to the room, sat on the chair with him on my lap next to the bed he would be laying on for the MRI. The anesthetist leaned over and placed the mask on his face. He panicked, was very upset and I had to hold him tight as the mask was held on his face. He cried and screamed for it to be taken off. That same fear in his eyes and eventually he falls asleep. I help them lay him onto the table, kiss him, and walk away. This never ever gets easy. Never. And he has done this a LOT of times. Never ever does it get easy. I feel so traumatised by all of this. I know he is. Even writing it down and reliving it in my head is shocking. I hate it all.

I walked out to meet danny who was equally as shaken as I, as he could hear Jayden crying from the next room where he was waiting for me. We both walked in silence for a while before either of us spoke. Trying to come to terms with every minute of every thing about this journey is hard. Never ever, easy.

An hour later and we were called back in as Jayden was out and in recovery. Still asleep,but out of the MRI.
Rewind as I missed a bit. When we arrived in the morning we were told Jayden had an appointment at 1pm after his MRI for tests in another section of the hospital. This was the first time we heard about it and weren't ready in our heads to stick around any longer than we had to and we know when Jayden wakes that there's no way he will want too either. We did know he was getting bloods done while he was out but didn't know about afterwards. Anyway we cancelled it, we just couldn't get our heads around it. while we were waiting for Jayden to come out of his MRI endocrinology phoned to say that they thought we should do the test and would try and tee it up with the recovery nurses so Jayden doesn't have to stay around so long. It's just a matter of drawing blood from his line every 15 minutes for an hour and a half. Of course, this wasn't possible as nothing is easy in hospitals. So we had to rethink if we should cancel or not as he has to have a canular in to perform the tests. In the end when Jayden woke in recovery, he was so stressed and desperate to go home I just couldn't. I felt so overwhelmed already with everything that the thought of putting him through anything....I just couldn't. I can't explain how hard it is. I just know that when he's upset In these circumstances I'm beside myself. I'm stressed, teary, angry, sad, overwhelmed and there is not one piece of me that could muster up the energy to jolly him along and get him to stay another two hours to do tests and have him have to keep that canular in that he was crying to have removed as he said it was hurting. Nope. No way was I staying. Neither was danny. Pretty sure he made that decision at 8:00am when we were first told about it.
So the tests were to be delayed for another time.

Back to being called....

When we arrived at recovery we waited in another room near by where they call us when he wakes. They didn't need to. I could hear him cry out 'mummy' and was on my way down to him before they got to me. He was sitting up, so upset and reaching out for me. I scooped him up in my arms and held him as close as possible. My heart was beating so fast. So worried. So scared for my little man. Praying and hoping with all my heart he was going to be ok. That the results were going to be ok. I was beside myself with worry.

Not long after, we were off and home with a much happier little man for leaving the hospital and parents who were equally relieved but still seriously concerned and stressed about the results. We came home to our beautiful girl and my sister who was minding her. So happy to see them both and just so damn happy to be home. I will never stop being grateful for that. For being home.

I tried to get about the rest of the afternoon by cleaning and doing chores in a failed effort to keep my mind off the MRI. I had my phone with me and must have checked it 100 times. I was so tired from lack of sleep and completely emotionally exhausted. I couldn't think straight and at times felt like I couldn't breathe. The anxiety was awful. By late afternoon the phone finally rang and the doctor told us from what he can see its good. But that we would have to wait until wednesday for the full report.
I was so relieved I cried. I know we still have to wait to hear the whole story but I was so relieved to hear it "looks ok".

It's Friday night and I've had a beautiful day with my kids. The sound of them laughing and playing together is without a doubt the best sound in the whole world. I so hope I get to hear that sound, all three of them together laughing, for a very, very long time to come .




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Tuesday, 21 January 2014

I went to PMH this morning with my other son Luke. He had an appointment.
As always, it was painful to go anywhere near that hospital and even more so at the moment with Jayden's MRI coming up tomorrow.

On our way out I had to go to the bathroom. When I came out to Luke waiting for me in the hallway a mother with her daughter in her arms was walking towards us on their way to ward 3b. Her daughter was red around the eyes obviously from crying. She had an NG tube, was skeletal, had very little hair and pain in her eyes. In both their eyes. The mother was trying to soothe her daughter as she walked quickly towards the ward. It took all my power within me not to burst into tears for this child and her mother. As they walked past us it was like life was in slow motion. Watching them pass. Seeing their Pain. So much sadness and pain. I could feel her worry, fear, sadness and I wanted to embrace them both. The sight of them both stayed with me as we walked to the car, all the while thinking "I still can't believe how this can happen ?" I still can't believe it happened to my son and I can't believe It continues to happen, nothing changes. Every politician in the world needs to see the face of this child and mother and so many many others. They need to feel that pain, that fear because while they don't, they couldn't possibly understand. Or care as much as they should.

I couldn't stop thinking of them all the way home. feeling for them and the overwhelming fear for my son. Wanting so very bad to help them but knowing the only thing that mother wants is something I can't give, and that sucks.

Seeing them was also a reminder of how raw my emotions are and how damn scared I am of tomorrow.

I couldn't write in this blog last night even though I needed to. My fear is so overwhelming that to write how I feel has become even scarier. Like it's safer to suck up the emotions than let them out.

When I'm asked how I'm feeling I can't even answer that question honestly. I don't want to as it's so damn hard to even go there. I'm just hanging in there.

Im now sitting at my kitchen table after spending the rest of the morning playing with Jayden. He's so gorgeous and I love him so very much. I've come to make myself a cup of tea and I'm feeling like a volcano ready to burst. I know I'm super stressed and seeing that mother and daughter today truly crushed me. Shit I'm so scared.

I can't even say what I'm scared off as I'm too scared too. Just the sheer mention of my fears and I'm freaking out.

I had to ring my dad about something trivial just now and I felt anger. Not at him but just in myself. The Volcano inside me, full of emotions. It feels like I'm ready to bite someone's head off or ball my eyes out until there's no more tears. Or both at the same time.

Jayden just found me having my cup of tea and came for a cuddle. Out of the blue he says " I'm going to be a dad one day mum" and that was it. The tears trying desperately to come out and me trying so hard to hold them back. I give him a big cuddle. My inner voice saying "please god, let him be a dad one day, please, please, please".



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Sunday, 19 January 2014

I'm so tired but I can't sleep. It's late. I'm tossing and turning in bed. Telling my self to just stop worrying , stop thinking and just sleep. I can't. Instead I cry. I'm scared and all I can feel is fear. I'm so very scared about Thursdays MRI.

It's been a really emotional weekend where I've tried so hard to Keep myself as busy as possible with my daughters birthday party on Saturday and her actual birthday tomorrow. But inside I'm a mess. An emotional wreck. I've been finding it so hard to contain these emotions.

I feel like I can't talk about anything without wanting to cry. The sheer mention of Jayden and I feel the tears coming. I'm just so worried. Really scared. Jayden has been unsteady on his feet a lot lately. He fell twice today. And he's getting this look. It's a similar look to the one he use to have before diagnosis. A sickly look. Pale face, grey under the eyes. Maybe I'm imagining it? I don't know. I hope I am. But I'm going out of my mind with worry and any minuscule change and I'm scared out of my mind. Crazy. Really crazy.

So scared . sleepless nights of sheer terror. Crying. So many tears. I'm lost. I don't know what to do yet I know I can't do anything. I have no control.

I wish sleep would come so I can stop the thoughts. Sleep. Then wake and get busy again in order to keep these emotions at bay. At night on my own with my thoughts....it's a nightmare. I close my eyes and my mind is a mess. Going to places that scare me beyond words. Stirring emotions I can't contain and leaving me crying into my pillow.

I just want to sleep. I wish when I woke it was all a bad dream. A shocking nightmare. And that we could go back to how life was. Before diagnosis. But I know that's not possible.

So I continue to ride this emotional roller coaster that has so many sickening bends, major lows and petrifying unknowns. Some days I manage it, but nights like tonight and the last few days are reminders that I'm not. That it's actually not possible and this is just the way it is.

I hope with all my might we get good news on Thursday and for every MRI Jayden has. Please, please, let that be so.








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Friday, 17 January 2014

Appointment at endocrinology

Thursday night

Jayden had an appointment with endocrinology yesterday at PMH.

He didn't want to go and cried on our front steps before we left. He knew he was going to the hospital and he was scared. I sat with him on the steps and talked about what wAs going to happen. Promising him that nothing bad is going to happen and he was going to be ok. It took a while, lots of cuddles and eventually he was ok about getting in the car.

He sat silent in the back for the majority of the journey until we were closer to the hospital.

We parked and walked in. As soon as I walked through those doors I felt ill. The place we had to go to was on the same floor as the oncology ward. Awful memories came rushing back and no doubt did for Jayden. I wanted to cry. Sick feeling in my gut. I felt my hand squeeze Jayden's tighter and when We went in, and sat down in the waiting room I hugged him even tighter.

It wasn't long before we were seen. A nurse came and took us into another room where Jayden had his weight and height measured, all stuff that's he's done before ( hundreds of times), all of which he had to have a lot of coaxing to comply with. He has simply had enough and doesn't want to be weighed, touched, measured, or anything at all anymore. And I totally agree with him. We have all had enough. But this is just the way it is, so we go through the motions.

We were then taken into another waiting room to wait to be seen by the doctor.

Again, we didn't wait long. Into another room. This time with the doctor. She gave us the run down on why we were there. Basically with Jayden's surgery, chemotherapy and radiation many things are affected and can cause problems in growth and his ability to produce steroids and a bunch of other stuff that I can't remember right now. Lots of information. But you only have to google the word endocrinology with childhood cancer and a bunch of stuff about thyroid issues and abnormalities, growth hormone issues, cardiovascular etc, etc. come up. I stopped looking after the first one. Another big misconception of childhood cancer is when you finish treatment it ends??? No it most certainly doesn't end. And the treatment that is used to cure your child potentially causes all sorts of nasties including other cancers.

Of course this is the gamble you knowingly take when you have your child treated for cancer. with the only one thing in mind and that is to save your child's life. I just want my boy to live. Obviously I would prefer he be really healthy and I really wish they could invent treatments that made that possible. But my only thing that I want for Jayden is that he lives. That's all I want.

Back to the appointment......

Jayden was non compliant with the doctor when she wanted to take his blood pressure and nothing I could say or do was going to change things. He does this thing where he closes his eyes when he's stressed and pretends to be asleep. He isn't. I know he isn't. He will remain that way until whatever he's stressing about is gone. So it wasn't until I left the room with him in my arms that he opened his eyes and spoke again. Poor little mite. I must say it's very effective.

This visit was to get a base line of where he's at now and do some tests to see if anything needs to be addressed. Which also involves a bunch of blood tests, one that requires us to be in overnight with a cannula in. The sheer mention of us staying there for a night and Jayden having another cannula in put shivers up my spine and made my anxiety levels hit the roof. No way did I want to do that to Jayden, neither of us did. Inside i seriously freak out at the very thought of doing anything to Jayden that makes him uncomfortable, scared, frightened or sad or any emotion at all that isn't a good one. I know my excessive freak ing out is not a normal reaction. Being stressed out is, but totally freaking out inside where I feel like I'm heating up inside, sweating profusely and my heart is racing, is not. I know that this reaction is no doubt due to post traumatic stress disorder and it's a quick reminder that it's still there and hasn't gone away anywhere. the trauma of the treatment has left deep scars on all of us and changed us all. Really changed us. forever.

Fortunately this particular doctor was really understanding and supportive of anything we decided to do but was also clear on giving us the facts. I Liked her.

She told us that she's concerned with Jayden's growth and steroid production. So hopefully the tests will give us an indication of whether those concerns are valid.
she also gave us time to think about the test that requires him to stay overnight. The others are blood tests that they are hoping to be able to do on MRI day. Next week.

I think being in the hospital that day was made even harder knowing we are due back next Thursday for Jayden's MRI. I am truly petrified of that. They most certainly do NOT get easier. Really, really scared.

I know I'm struggling at the moment even though I'm trying really hard not too. Keeping myself busy just to try and stop the thoughts. But simple things like wiping the bench down and a wave of emotion comes crashing in. Out of nowhere. I feel it hit and try so hard to swim through it. Holding back the tears, the fear, the anxiety. My daughter comes in and asks me a question and I'm able to temporarily snap out of it. Shitty stuff. So damn scared. I so want my baby to beat this. I so want him to be able to grow and experience all the things he should get to experience. Just love my little man so very much.


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Monday, 13 January 2014

Layla, Jayden and I went out today to buy some things from the shop. They are so lovely to take out. Jayden is so easily pleased and never asks to have anything. He just loves to come with us. No matter what we are looking at he's happy to look and help too. He made me smile when he was looking for bathers with me. He was picking the ones he thought would be best for me. Loved it. Didn't buy any but it was lots of fun to look with him. Layla too. He particularly loved looking for shoes for Layla. So sweet.

On the way home we stopped at a park. It was really lovely. Layla makes him so happy. He has so much fun with her. There was a swing there that he could safely fit into without falling so I was able to push him a little higher than usual. As he swung, His laughter was so loud and hard that he had both Layla and I laughing out loud with him. Just precious. It was such a brilliant moment and I really wanted to write this entry just so I could mention it. He was so happy. He was laughing so hard that he couldn't talk. And when he did he said "not so high" with a big giggle! Hilarious. And after going on everything else he wanted to get back on the swing for another go and again laughed and laughed. Truly wonderful. I want to remember that moment for as long as I live. That laugh, that smile, every bit of that moment .

I had left my phone at home so i couldn't take any photos. I was left to live the moments and hope I could rely on my memory to keep them alive, hopefully forever. It felt weird as I always have my phone and I'm always snapping photos. But today. None. In a lot of ways it was better. I actually got to give my 100% into the moment instead of desperately trying to capture it in a photo.

He's having such a lovely time with the kids at home. Dreading them going back to school. Wish I could flag school altogether and just have them all home spending time together. It's what matters more than any assignment. That's how I feel anyway.

I'm tired. It's late. Just put my daughter to bed and now I'm sitting in my room listening to all the snoring going on in here.

Looking at both my little men. So peaceful. Boys who I hope one day will both be men. I know that they will be good men. Kind. Loving. Good. I hope so much they get to be those men, together. Both of them, grow old. Together. Brothers, forever.

The taps dripping in the bathroom and I know I have to get up and stop it. It pauses for a few seconds. Then drips again.
That's it. Got to stop it.

Done.

I'm going to go to bed now. I just wanted to write about Jayden and the swing. I don't have a photo of that moment, only a beautiful picture in my head, and I hope this blog entry will easily bring that memory back, the picture. The moment. Always.




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Sunday, 12 January 2014

Laying in my bed. Next to my little man who's sleeping peacefully.

"Cuddle mum ", he asks after I turn the light off. I put my arm around him and hold him close. Within seconds, he's asleep.
Now I'm laying looking at the ceiling. Counting the edges from our room to the wardrobe to the bathroom. I've always done that. Counted things. When I'm trying to think about nothing. I count. Weird.
Of course I never get to the headspace where I think about nothing. A clear head. Never. Always full of thoughts. Always the same thoughts.

Snuggling my little man and watching him sleep. Seeing him so peaceful. Feeling like I need to cry. So worried about his MRI coming up. Scared.

His innocence. His little nose. Little face. Chubby little body. Little hands and feet. Just love my little man.

I look at the ceiling again. Paint peeling off in the corner. Must fix that. Sigh. Fans on high and squeaking, giving a small distraction to my thoughts. They never change. Maybe I might skip the channel in my mind for a second or two, but it flips right back just as quick.

I went out with two beautiful women last night. Both living nightmares of their own. One spoke of her every moment no matter how good, as having a ' flipside'. I understand this.

Every smile I get from Jayden, every laugh, cuddle, squeal, every moment, there's a flip side thought. The worry flips up straight after the moment. He smiles, how many will I get. He laughs, will I see him laugh this time next year? He cuddles me, how long will I be blessed with these cuddles. A wish for forever, a lifetime. But a very strong awareness of the unknown future.

He's so precious. He made me laugh so hard today with his antics. And as I laugh and see him smile I hurt so bad inside. Please, I hear myself say inside. Please let him stay with us for a long time. A lifetime. Oh please. Please.

He played with Layla for almost all day today. Swimming in the paddle pool. Playing in his room. She even got in the bath with him tonight which he was absolutely delighted about. He loves her. He said to me today "Layla looks after me". Oh yes. She sure does. She loves him and would truly do anything for him. Like a mini mum. I love hearing them together. I love knowing he's spending time with her. And her him. It's so special.
Love them both. And my other little man, of course. Little Luke.
Love them all. So much .

Need to join my other two to watch a movie. Never want to get up from my little man sleeping. Could watch him for hours. So precious. Love him so much.



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Thursday, 9 January 2014

Sad

I've found it so hard to blog lately . I don't seem to have the right words that I'm happy with. I write. Then I delete. Write, then delete again. I'm no longer satisfied with what I write.

Today is no different. If anything, worse. As today I attended another funeral of a child with cancer. And I want to be able to write this blog and get it right. Say the right things, give it the right words. But all I can come up with is, sad. Today, Thursday. A sad day. A very sad day. Another funeral of a beautiful boy, from a beautiful family. So bloody sad.

I'm lost for words. I just don't know what more to say anymore. I wish I could find words powerful enough to truly explain how sad this is. How crap it is that another child I know has died of cancer. So damn sad. Truly gut wrenching. How truly awful it is to see another family crushed with grief. A family I know well. People I truly respect and adore. Kind people. Loving parents. Two of the nicest people I've ever met. Crushed.

I'm sorry. I'm so sorry for these parents. I know being sorry isn't enough. Not even close. Nothing could possibly ease their pain.

I'm scared. Truly scared beyond belief. So frightened of the future. Trying to live in the moment but knowing all the time that the future is there.

I don't know what more to say. What more can I say that I haven't already. Childhood cancer sux. Beyond words. There are no words. I hate it. I hate it that it hurts so many beautiful families. That their beautiful children have to suffer. I hate that my family is living this journey. That my son has faced such trauma, that he has suffered so much, and that his future is unknown. I hate it.

I'm so sad. Angry. Scared. Frustrated. Exhausted.

Sad.






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Tuesday, 7 January 2014

Tuesday

I took Jayden to the doctors today. This time because he had a nasty fall yesterday, where his face hit the brick paving so hard that his tooth made a hole in his upper lip. It didn't go right through but it was a nasty cut and his face was scratched as well as his nose knocked hard enough for blood to stream out. Poor little mite.

I heard his cry when it happened as he was out the front with Layla and I had gone in to grab something (of course happens when I'm not there). I ran out and scooped him up in my arms. I could see he was in a lot of pain but he was so brave. Honestly, he took it so well. I was worried out of my mind, as I do and wanted to rush him to the nearest hospital and into the emergency section but multiple visits there have soon taught me you really don't want to rock up there unless it is in fact an emergency. So I managed to get myself calm and rational enough to ring a friend who is a nurse instead. Love this lady. She is mrs cool, calm and collective and knows how to ease my mind.
So after I had him all cleaned up and feeling better with a cold icy pole to suck on he was much happier.



But today I still wanted to double check all was ok and took him to my local GP whom I truly adore. Wonderful doctor that has given my faith back in doctors as there was a time I did not trust their judgement at all (given the experiences we had it really was no wonder). But this man is so thorough and truly goes out of his way. Lovely person. He checked him out and assured me Jayden was going to be ok. Wish he could be telling me that about his overall health. Wish he could say "don't worry Leisl everything is going to be ok", " Jayden will be ok". Would love to hear those words. More than anything in the world.

Anyway, we left the surgery and needed to get home as we were all going to the river for a BBQ. But Jayden in true toddler style was in no hurry and found a bench that he wanted to sit on, on the way to the car. I was about to say no we have to get going when I thought "why not". He really has taught me to slow down. When he wants to stop or look at something or change direction to where we are walking, I just do it now. I don't worry if it's going to mean we are going to be Late. Whatever else is happening, I know, it can wait. These moments can't. I don't know how many I will get so they are so precious that I can't pass on any of them. So he plonked himself down on the bench and I sat alongside him. Terrible view as it just looked out on to the traffic, but a beautiful moment. I took a deep breath and smiled at my little man. "I just love you so much" I said. "I love you too mum" he replies. I so love my little boy. More than life itself. I just want so much for him to be ok. More than anything in the world.

We didn't sit for long as also in true toddler style, he can't sit still for long. So off we went in the direction of the car. This time he wanted to sit on the curb near the car and so we did that. All alone, together in a very quiet carpark, sitting. Up again and finally in the car. Another ten minutes goes by as we examine every bit of his car seat and then finally in the seat and leaving for home. God I love my little man so much.




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Friday, 3 January 2014



Going about life in a somewhat numb fashion. Answering questions when asked, joining in conversations and fitting in. Laughing, smiling. The moments short but I have them. The moments of a somewhat normal life. They come, I feel them and in a second their gone. They get longer sometimes. Especially when I'm busy. But no more than a few seconds. I'm always flipping back to the reality of our life, taking a deep breath then trying to get back into the normal. I never stay there long because it's not us any more. Never will be.

No matter how much I try to jump into that life, it's always going to spit me back out again. Our life will never be as it was, and how I felt inside will never, ever be how I did before. Never . I'm not the same person as I was before Jayden was diagnosed. I may look like it from the outside but inside she's not there anymore. Not the mother that was there before. Not the woman, the sister, the friend that was there before. all, Gone. What is left is a woman that has been exposed to so much trauma, sadness and an ongoing awareness of shit that happens to children with cancer. An overwhelming fear now exists within me of losing my child and the knowledge and awareness of so many parents who have.

So I can stand and have a conversation, one about whatever the subject is chosen to be, but inside I'm either numb to the importance of it or am simply unable to reLate anymore.


The next day.......

I'm sitting at the kitchen table. It's early. I'm thinking of a family whom I care for very much who recently lost their child.
Another funeral.
More pain. Pain that has entered another families life that no parent and their family should ever have to endure. A sadness so deep. I am certain there are no words stronger enough to describe that sadness and pain, adequately.

I don't know what to write. Lately I've found myself speechless. How much of all of this can be truly digested. In someways I find myself internally shutting some of the feelings out because they are so overwhelming. It's as if Im an emotional vessel that no longer can fit anything more in.

My days are full of pushing the feelings I do contain to the back in order to function. But that is all tested to its limits when someone I know, lives my worst nightmare. The awareness of the reality of this journey is so overwhelming. My heart aches for this family, and I'm so scared. I feel like it's only a matter of time. How much time....I don't know. That's where I shut down. Because the very thought is so awful, so painful, that I don't know what to do with it, .

I know I've written this so many times before. Of how much I wish I could change this for this family and so many others. For all of us. I really wish that were possible. A magic wand. If only....,


Having the kids home from school has been a wonderful distraction. Spending time with them is gold. Always keeping me busy and making me smile. They are what I live for. The reason I get through my days.
I hope and pray they are all, still with me when I'm old and grey. And most of all I hope That they all, live long, healthy, happy lives. More than anything in the world I hope for that.





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