Tuesday, 30 April 2013

A battle

When I think about today I think how nice it was to be with my kids. Luke went for a play over in the afternoon but in the morning we went to visit Cahuna wildlife park again. The kids love this place as its almost always quiet and no hussle and bussle. On the drive home Jayden slept and when we arrived home I put him in bed. I always find it hard to get up from him at this time. He's snuggled into me as I've carried him there and laid him on the bed with me then I never want to get back up. Often when the kids haven't been there I stay. I know I have lots to do but I just love watching him sleep, laying with him and sharing that moment.

Today I had to get up however and be with my other two. They have truly been so wonderful these holidays and I just love having them home.

Luke got picked up for his play not long after and Layla was busy with her guinea pigs so I thought I'd get back to a project I've been busy doing lately. Sorting photos.

I went through some photos today and as always, it stirred up a whole lot of emotions. I'm often reluctant to open the files that I know contain photos of Jayden before he was diagnosed or the ones during treatment. Before diagnosis reminds me of the life we once had and thats crushing. During treatment, I can't even put words to those feelings.

I put together a couple of albums though and one was of a time when Luke was the same age as Jayden. Nudie, bar a nappie, jumping on the trampoline, having fun with Layla, being a normal two year old. As I looked at his photos I thought to myself " I am so lucky he is still with me". You truly don't get the absolute gift of life and how wonderfully blessed you are as a parent to firstly, have children and secondly have children that a healthy until you travel a journey like this. There is nothing I take for granted about my children. I know with 100% certainty that i am lucky and blessed to have them in my life.

Luke was dropped off in the afternoon and I got talking to the mother. During that conversation she asked me how Jayden was going and how we all are? I don't know her very well and it's the first time she's asked me those questions. I stood there for a second thinking to myself how do I answer that question correctly and honestly? To do it with accuracy I would not be able to cover it in one sentence. And to answer it honestly so that she really understood our life, would be impossible. And if I were even to try, would she really want to know?

So instead I brushed over it briefly, i never got to say the things I really wanted to say nor express the true feelings I feel every day. "It must be awful", she replied and "I can't even imagine". She's so right with both. It is awful and there isn't any way in this world you could imagine it and you wouldn't want to. She also said "you must have to learn to live or think a different way now". Yes, you do. I know I've had to learn to contain my thoughts and fears in order to function. I've had to learn to keep them at bay as much as I possibly can to prevent myself from falling in a heap. That's not to say I still don't but if I do, I do it alone.

I lay here now next to my little man, and I just love him so much. The anxiety of what could be creeps back and a wave of emotion surges within me. i gather my thoughts and work hard within myself to bring me back to the now. I Make myself focus on him with me now and snuggle him tight. The thoughts come back and a tear falls, but i focus again on my little man in my arms. Back and forth i go, struggling to keep it together, to enjoy and to believe. A war I battle regularly within myself, particularly at night.

Sunday, 28 April 2013

Can't sleep

I can't sleep. It's late, im tired but no way is sleep my friend tonight. Everyone around me is snoring, but not me. Thoughts racing through my head of Jayden, children I've recently read about on Facebook, their families, the past, the future, everything. No one thought sticking for long, just a jumble of thoughts travelling through my mind like a merry go round, going around and around.

I've finally got up and now sitting in the kitchen. I'm so sick of these nights and I just wish I had a switch I could turn off to all my thoughts so sleep would come easily without being completely exhausted for it to do so, or the help of medication.

It's not that I've had a particularly bad day because i haven't. its school holidays still and i love them. i love having all my kids home and having them home really does take the edge of this existence. They remind me every minute of everyday how lucky i am to have them and how special they are to me.

Luke chatted with me before bed as he lay in his bed next to ours tonight and we talked about his bunny. His bunny was his special toy he'd had since he was a baby, one he never went anywhere without and one that caused us many nights of searching the back yard for it with torches before bed as there is no way he would sleep without it. However in our haste to pack and go to Chicago last year we had forgotten it. poor luke not only had to grow up very fast when this journey began but when uplifted and taken to another country miles away for his brothers treatment, he also had to survive with out his bedmate.

He asked me tonight why we had to go to Chicago, and told me he doesn't remember much about it now as it was so long ago. It never occurred to me at the time to really sit down and explain it all to him and instead we packed, left our home and in it, his bunny.
Tonight i tried to explain it to him but I'm not sure i did such a good job as it wasn't long before he changed the conversation to the bug he found on a tree over there.

He loves his brother. They are almost always together and no one makes Jayden laugh like Luke does. I want to record it one day and have it on repeat so I can listen to it whenever I need to.










We took the kids down to the river this morning for breakfast and it was really lovely. The kids had a wonderful time and so did we. When we got back home we had a visitor. A wonderful lady who gave the kids three hermit crabs. They were so excited and it has kept them amused for most of the day. So grateful to this wonderful woman. Felt like she was an old friend when she came. Really nice feeling to meet such a nice person.




Jayden wasn't too sure about them at first but it wasn't long before he was playing with them too.



And this photo is of my little man after bath time. Big smiles all round. This is taken in the middle of playing with his brother and sister which he always does before bed then its teeth, books and sleep. He had no problems falling asleep tonight as he had a pretty big day. And unlike me he doesn't lay awake worrying about the future. I was told recently that he will be my best teacher of how to get through this existence and there is no doubt that this is true. but theres also no doubt i must be his worst student because I'm finding its so damn hard to learn. to learn to live each day like him would be to change the way I mother. He's my beautiful baby, my youngest child and no matter what I can't stop worrying about him. Every time I look at his little face I'm so grateful he is with us but so very scared he won't be one day.

I watched him at the table tonight, chatting to himself as he played and within me I let out a big sigh as the thought of him really sick this time last year crossed my mind. A flashback of before. They come into my mind every now and then and remind me how lucky we are that right now, at this moment he is well. But it feels like I'm walking a tightrope, one that we walk everyday, where just one wrong move and our lives will come crashing down once again. That I'm often holding my breath hoping and praying that wrong move never happens.


Friday, 26 April 2013

Returning home

I woke this morning to the feel of my little mans breath on my face. Snuggling close into me, soundly sleeping, dreaming of good things I hope. We awoke in our own bed as we arrived back from our two nights away yesterday. An early night had by all last night and up early this morning.

The kids are outside playing at the moment as I get a chance to sit and eat my breakfast. Danny's asleep because he worked last night and so I'm on my own in the kitchen listening to the sound of my kids laughing. Love that sound.

We had a lovely time away but as always, moments were darkened within me at the thought of the future. With every laugh, smile and giggle my kids enjoyed together I felt happy but very sad that they may not have that one day. That their dreams they share together may come to an end.

It's difficult to truly enjoy and relax anywhere when the dark cloud of a future unknown, follows . Every time I hold my little man, stroke his hair, carry him in my arms or snuggle him as I sleep a deep sadness overwhelms me. The thought of not being able to do that one day creeps in, sometimes for just a second or two and sometimes much longer. The thought of not seeing his beautiful smile, hearing his gorgeous voice and watching him grow is truly excruciatingly painful. There are days where the thought is not there all the time and I am able to keep myself busy from it. But most days, no matter where we are, its there.

I only have to read my Facebook page to find another child losing their battle with this cancer. As I've said before, once you enter this world of childhood cancer you will always know pain, know sorrow, grief of what was once your life and sadness for others whom you know so well the pain they live.

For people not living this nightmare a simple switch of the computer and a life of not knowing what's happening would be created. But turning off the computer doesn't turn off our lives from childhood cancer. We live it, breathe it, everyday.

We wont let it stop us from doing normal things like going away though. And we wont allow it to stop us from living and enjoying time together as a family. but cancer does take away the ignorance, the blissful "not knowing real heartache" the stuff that cuts you to the bone emotionally, rocks you beyond belief, leaving you just standing and trying to work out how your next step will be made without falling in a heap. Each day we grow stronger as a family, each day we learn how important we are to each other and we wont let it stop us from living life.

But the thoughts of the future will always haunt us, and everyday we work to find ways within ourselves to keep on going regardless and live life as well as we can.




- Posted using BlogPress from my iPhone

Tuesday, 23 April 2013

Heading off

We are on our way. Kids in the back chomping on snacks and danny and I in the front chatting about stuff and things, struggling again today but mainly due to a very late night and an extremely early morning.
Luke asking every five minutes if we are nearly there and Jayden mimicking his every word.

It was a difficult morning to get moving and I was so wishing I had of done all the packing the night before instead of sitting on my phone. But, we are on our way so that's a good thing and we managed to set off at the time we planned too, amazing.

Jayden woke this morning with a swollen ear. He said "mummy I have a floppy ear". It looks quite a lot bigger than the other one and is dropping down from what appears to be swelling. My first thought however was something far more sinister and I began to feel sick to my stomach with the thought of it. But upon further inspection I'm pretty sure it's a mosquito bite. Yesterday I took him to the doctors because both his hands were swollen and looked really bad. The doctor was confident they were bites as well but I have never seen anyone react like that before.

So now he has one big floppy ear and one little one. I can't help but worry it will remain like that which truly is the least of my worries but anything on top off what he's already been through and the scars that are left to remind us is more than enough.

Speaking of things that, 'Remind' us of the past Jayden found a sick bowl last night that we must have bought home from one of trips to the hospitAl. no idea where he found it and thankfully it hadn't been used. When he bought it in to me I instantly felt uncomfortable. A very real need to get rid of it and any other trace of those reminders encompasses me. Every time I see a towel, syringe, feed bag etc I just want to bin them and with them, all those shocking memories.

This entry I'm going to end however with a photo of my little mAn with his best buddy, his brother.
His little face says it all. His enthusiasm for life, living every moment and loving it. I'm so proud of his spirit, his strength and his love of life.



- Posted using BlogPress from my iPhone

Planning Time away

Feeling a little flat this evening. Shouldn't be as we are planning to go away for two days but i just don't have that feeling of excitement over it that I should. I think with every outing, time away, I desperately want it to be perfect that come the day to leave I'm already emotionally exhausted trying to plan it out so that it is. Or maybe its more that its just not as easy to be excited about stuff anymore? That the things that would normally make me yell out "hooray" just don't anymore. That what would really excite me and make me jump up and down with pure and utter joy would be if they found a cure for childhood cancer. Now that would make me yell" hooray!"

One of the things the councillor i saw last said to me was," you have 30 odd years of experience in life, so now give your son as many experiences as you can, in however long life his will be". After i left that day and since then i have found myself thinking about a heap of different things I should take him to, a heap of things he should experience and do. Everyday i tick off in my head something he's achieved or done and I've been so grateful to have witnessed it and thought about what else he can go see and do. But today when we had an outing organised to go see some animals at a library, that all changed.

I began getting ready to leave and i wanted to change him out of his pjs so we could go and he didn't want to get out of his pjs. All he wanted to do was stay in them, play lego and just be. i looked at him as he sat amongst his lego in his oversized pjs, hand me downs from Luke and thought " what am I doing?, he is so happy where he is why do I want to upset him to see animals". I know he would have of enjoyed it but he's happy where his is now. On top of that he still has this damn cold and dragging him out somewhere just seemed silly.

That moment though really made me think. When ever we have gone away he often asks "when are we going home". He's always so happy to come home and usually way more excited than to leave.
The only reason he's remotely excited about tomorrow is he thinks we are joining his neighbour Aoife whom he knows is on holiday at the moment and misses terribly. I tried to explain to him its somewhere different but I'm not sure he's got it.

Hes spent so much of his life away from home that maybe the best experiences he can really have is just be at home with us. thats where he is his happiest. Im no longer going to stress about what he needs to see or do in his life but just follow his lead. And maybe the reason why I'm not so super excited about it is that's how he's feeling.

I wish I could be. I wish I could be sleeping soundly knowing we are going to spend a couple of days together as a family and that bit I am very happy about. But with every "normal" venture I take its a very clear reminder how "not normal" our life is. That going away, Xmas, birthdays, etc just don't ring those bells anymore but instead remind us of our life. Our life that is so different now, that a birthday, xmas, a holiday, makes us think to ourselves " "how many more will we get with our little man" . I know I should try not to think like that, but its always easier said than done.

Fortunately yesterday and today were far better than the day before on my part as a mum and Ive been trying to focus on bringing good "vibes" into our home. The psychic I saw a few weeks ago now told me to surround our home with herbs, and unblock our front entry that had Layla's guinea pig cages there so they wouldn't get wet. So Danny and I have been busy this last week with the help of our neighbour and beautiful brother in law to make a pen for them on the grass. It looks great, we are now back to using our front door and I was busy scouting the garden department for herbs and any plants that are known as lucky. I mentioned this now as I'm sitting at my kitchen table with a Chinese lucky bamboo plant.
Lets hope it brings the luck we need.

I'm pretty much at that point in this journey that I'm willing to try anything, although I'm pretty sure we have always been at that point. Anything to give me some sense of peace and anything that will make me feel like I'm doing "something".

When I put Jayden in the bath tonight I had planned to fold some washing up while I watched him and he said "mummy come in to?" My immediate thought was washing, then I thought "stuff that". I jumped in, sat with him, listened to him talking, played and was so glad I did. Sometimes I feel myself slipping back into the hussle and bussle of life but when I look at him, his innocent little face, I know. I know that right then, that moment, is all that ever matters.




Jayden pushing his trolley when we were shopping for herbs.



A much happier time at the shopping centre yesterday




The kids playing outside today.



Luke and Jayden sharing a joke.




Really happy :)

Love my little man.

Sunday, 21 April 2013

Not the greatest day

A 4:30 am wake makes for a Very cranky mum and if there were ever a day I would live to regret, then this would be the day. Cranky at everyone, terrible mothering skills and hating myself for it. In fairness to my children they were perfectly behaved once they realised mum "was losing the plot".
Even Jayden as young as he is, completely got it and was on his best behaviour. Not fun at all

I wound up completely blowing my top before dinner and walking out the front to simmer down leaving a wake of nervous people behind me. No sooner did I sit in the swing chair out front to cry than my eldest son appeared holding out a glass of wine for me. "Dad told me to give this to you". I wasn't sure whether to laugh or continue to cry. He went on to say " I couldn't do anything else mum as him and Layla were cleaning up so dad told me to do this". God I'm lucky, i thought. Truly what a beautiful family I have. I'm busy losing the plot and everyone around me is trying to make it better. I gave him a huge cuddle, sat there with him thinking how stupid i was to be wasting a day cross with the most important people in my life.

I think i just had a moment where i was just fed Up. tired, fed up with everything. fed up with living the moment, trying to remain positive and just wanted to be cranky. i just wanted to say "f#*@ all this and let me just hate the world for a day". Of course it left me on a huge guilt trip later for being so cranky at the people i love the most and really hoping its not one of the moments that stay in my children's memory and they retell it to me in years to come.
Jayden's little face was the worst to see. He was so tired himself and when he was woken after 10 minutes of his nap by his brother slamming the door he couldn't get back to sleep. That left him super cranky too and I just wasn't good at coping today. I truly hated myself for it as well.

Fortunately after my son came outside to give me a glass of wine and I sat with him and we talked, i found a time to breathe in and suck up all the pain and get on with the rest of the evening as I do most days now. hold it in, focus on today, be grateful. Together we went back inside and mum was "back". I scooped Jayden up in my arms and kissed him and didn't want to let him go. I hope I never have another day like today that makes me wish so hard I could have it back and start again.

Fortunately the rest of the evening was much better and I spent a big part of it playing with my three kids. God I love them all so much.

I Had a conversation with Jayden this evening just before bed. He noticed a new photo I put of my mum above my dressing table. "Who's that mum?" He asked. "That's my mummy" I told him. "Where is she?"He asked. "My mummy died a long time ago but she is always with us, especially you. We just can't see her". He thought for a moment then said "are there toys there?". "Yes" I said, "I think there's lots of toys there". I found myself painting a beautiful picture of the afterlife to him and I've never once even thought of it before or had to answer a question about it.
I wish I could be confident I was right about what i said, but I guess no one really can. However the more I try to find peace in this journey the more I want to believe it is. I really want to believe that there is a beautiful place and my mum is there waiting. That she really is with us every day and night and as I lay in bed right now next to my little man, she is watching.

I thought if she were and she could hear me, what would I say? " I love you, I miss you terribly. I wish you were here.". I know she would have loved my children and they her. I hope that she is with me , I hope she is with Jayden always. And most of all I hope she can keep him safe, so he will grow old and be with us for a lifetime. I hope she hears that.

- Posted using BlogPress from my iPhone

Saturday, 20 April 2013


It's been two days since I last wrote and two days which I was able to get off the emotional roller coaster for a while. Doesn't take long to get back on it again but for two days I felt I could breathe, feel the breeze and enjoy my little boy. But a quick skim of Facebook, a text from a friend to tell me another boy has relapsed and I'm back on that coaster.

It never ends. There's no finish line to this journey and by no means is it a race but boy would I like to be able to breAk through a ribbon with my arms up high saying " yah we have finished". Instead a slow wait till the next scan and a constant battle to live the moment, remain positive and keep on smiling. So often easier said than done.

I visited a beautiful cancer mum the other day another friend who's child had cancer and is currently in remission. We are all travelling this journey but everyone at different stages and different emotional rides. Some seem to travel it smoothly like this wonderfully strong woman and others like myself not so.

Without people like this wonderful woman in my life it can sometimes be incredibly isolating. Some conversations I just can't have with people who aren't living this and it truly helps to know people who are. I'm lucky I have supportive friends but in normal settings like school pick up or grocery shopping for example, I feel incredibly alone and a sense of being "outcasted". Of course I'm not really but I know people often avoid me so as to avoid any conversation they may be uncomfortable with as they simply just don't know what to say. I'm no longer angry with them and now at a place of understanding but also incredibly envious of those people. What i wouldn't give to be someone who hasn't a clue about this world.

I am however often surprised by complete strangers and their enormous capacity to put themselves out there, write to me, message me or speak to me. The other day I had a lovely lady introduce herself at school to me and ask me how Jayden's MRI had gone. When I told her it was good she burst into tears. I was so taken back by her sincere concern for my son, it was truly beautiful. We have been truly fortunate to be touched by such lovely people that we can now call friends. special people that have opened their hearts that were strangers before this journey began.

I'm now laying in bed next to my little man and he's sound asleep. I just love watching him sleep. He's had a beautiful day. We all have. Didn't do anything special, but the kids have finished school for two weeks and it just always feels so good when we are all together.




This morning in his pjs


With his crazy hair and runny nose still :(


Jayden wanted to have his bath in the kitchen sink tonight!



Last night. Love my little man :)

Tuesday, 16 April 2013

MRI

Nothing can put a smile on a parents face of a child with cancer, than a clear scan. Yesterday Jayden had his 3 monthly scheduled MRI and his oncologist told us late afterwards that it looked good.

It was a scary time, one that is so nerve racking its unbearable. Jayden wasn't happy being there and no sooner did we check him in and have his obs taken, he was asking to go home. All too familiar to him and no good memories in his mind either I'm sure. He was getting really distressed in the waiting room and we were blank for ideas of keeping him happy to stay. probably because we didn't want to be there either and no doubt he felt that from us. fortunately some workman were working on the side of the hospital where a window was that we could look out and watch. That view Managed to kill some time until his name was called and up we got to follow the nurse into another room where he was to receive his pre med. he was so good at swallowing it and the little bit of water afterwards. Then followed the wait for it to kick in. Danny was doing brilliantly at entertaining him and fortunately in this room there were plenty of toys to use as props.



Once the pre med began to kick in he started to get really worried as he knew it meant something was up but his body was relaxed in my arms. He kept saying over and over again that he wanted to go home, he just knew.
Ten minutes or so passed and we were called up, only one parent can take him in and that's usually me but its always distressing him to see Danny leave.

We followed the nurse into the next room with him in my arms clutching at my neck crying to go home. When we arrived i knew the routine and sat with him on the chair next to the bed. They no longer find a vein in his arm anymore whilst he is awake because its too distressing for him. However the alternative is putting him to sleep with the gas. This means pressing the mask onto his face and watching him scream for what feels like an eternity as I hold him. The sheer look of terror in his eyes when this is happening is one as a mother you will never ever forget. This definitely does not get easy.

After the gases took hold and he went to sleep I gently put him on the bed with the help of the nurse. I kissed him on his head, hope with all my might he would be ok and walked away. I walked out to meet danny, big hug and cried my eyes out. I have done this so many times before but not one feels better than the other. Nothing about this journey is normal and putting your child through this abnormality is truly gut wrenching. I hate it beyond measure.

fortunately we have not had to do this for three months but its still crap. I also think that's why Jayden was so very upset today.

The Good news though was he came out of the anaesthetic a couple of hours later really calm. First time ever. He was relaxed, thirsty and ready to go home. But he was calm. Not crying and upset, just calm. That made all the difference. We took him home as soon as we could and waited for a call.

I don't think the drugs he had agreed with him and he had chronic diarrhoea. We had to stop the car on the way home to change his nappy and for the rest of the afternoon I was busy changing him. It settled by the evening fortunately for him.

I'm now sitting in a cafe not far from a dental surgery and its the next day. we did get that call from Nick and he said it all seems fine but we have an appointment next week to discuss it more thoroughly and for Jayden to have a checkup.

Today my other son Luke is in day surgery with his dentist. He has had to have several caps put on his teeth and they needed to put him to sleep to do it. So today I held my big boys hand as he was anaesthetised.

The anesthatist told the nurse as she went to explain things to me "Don't worry, mum has done this before many times". Yes, sadly I have. What I wouldn't give to be a naive mum who hadn't and needed the explanation of what was to come. I sat there holding Luke's hand as the drugs took hold and as he fell asleep i wished I was that mum.

The mums that sat In The waiting room outside with worried looks on their faces as they wait for their child to go in and have a dental procedure under anaesthesia. What I wouldn't give to be one of them.
Instead I'm a "done this many times before mum" and that is no title worth baring. It's no title I want or ever wanted.

Luke fell asleep easily i kissed him on the head, and walked away. now i am sitting waiting to be called when he's in recovery. I feel emotionless. I see the other mums with worried looks on their faces and I don't have one. I've been through so much trauma with Jayden that a simple dental procedure feels like a walk in the park. I wish it didn't. My life has changed so dramatically and I hate how much its changed me. i so want to be one of those mums and the sheer thought of it brings tears to my eyes. because i was one and i cant go back.

Things like today remind me of that. Remind me that our lives are so different from so many others.
It's truly heartbreaking.

I think the emotional roller coaster I have been on In The last 24 hours cannot be underestimated as anything less than a huge exhausting Journey. Although i am so happy with the result, ecstatic, over the moon and relieved, i know it doesn't mean i am now one of the mums in the waiting room of the dental surgery. i never will be. For this journey goes on forever, and everyone of us who love my little man, it has changed us all forever. There is no going back.




- Posted using BlogPress from my iPhone

Monday, 15 April 2013

Scanxiety

Scanxiety, what parents of children with cancer refer to the feelings you have leading up to Your child's scan. There's no doubt its an extremely stressful time but i don't know life to be any other way anymore. sure, i get moments when i can laugh, breathe and smile but for the big part of it i am already living in a state of anxiety, worry and concern.

So as the days lead up to Jayden's next MRI i thought i was coping as per normal but today was far worse than the previous days. Looking back now I think it was a slow progression over the last few days, maybe weeks that peaked this afternoon.

The morning started off ok, kids to the dentist a visit to my beautiful neighbour but by lunch time I was feeling the strain. The afternoon was hard, the evening worse, and the end of the night ended in tears.

An argument with Danny, I yelled at my daughter and wasn't coping with a normal everyday at all. Eventually I stopped and knew this has nothing to do with anybody or anything anyone hasn't or has done but rather an enormous amount of stress brewing within me of worry over tomorrow's MRI.

Danny and I talked about it afterwards and we know. We know how this works and we have had to accept this as our life. We have beautiful moments and memories with our children and we know how important and special they are. But it's truly a damn hard way to live and these scans are definitely the hardest of all.

I spoke to Jayden before we went to bed just like the last time and let him know he would not be able to have breakfast or anything to drink when he gets up in the morning as we were going to go to the hospital for him to get his MRI. He immediately started to cry and say "no mummy". God my heart broke. As he gets older he's understanding more and i knew he understood what this meant. Luke asked why and I had to explain to him that he had to have them every 3 months to make sure the cancer hasn't come back. I think that conversation really knocked Luke about as I'm sure to him it seems those times are all over and he started crying because we weren't going to be here to take him to school. memories of a time before flooded him. I assured him all would be fine and when I mentioned a possible play over after school he was much happier.

I went into my daughters room and gave her a big cuddle and apologised to her for getting so upset with her. I explained to her how stressed I was feeling over the MRI tomorrow and that it wasn't at all her fault that i was cross. she cuddled me back and said "don't worry mum, everything is going to be ok".

I so hope will all my might she is right. That everything will be ok and Jayden's MRI will be clear. No sign of cancer. Please, please, please let that be the case.





Saturday, 13 April 2013

CT scan

Friday

Had my CT scan today. Makes a change from Jayden. I Arrived there a little late due to a visit from a wonderful friend I haven't seen in sometime. Fortunately they were running late at the centre as well so it was fine.

I had only sat down for five minutes in the waiting room before a man came out and called my name. i got up And walked to him, he introduced himself and asked me if I had had a CT scan before, "no" I said. We began walking to the room and he said, "So you haven't seen this machine before then". "My son has had many so yes I've seen it before " I replied. "Oh " he said, followed by silence. He didn't ask anymore questions just showed me to the room.

Inside was the enormous ring shaped or donut shaped if you like, machine with a skinny bench that you lay on in the middle. He told me where to sit, put my head and how long the whole process would take. I carefully got upon the bench, lay my head down in the required spot and immediately began to think of Jayden. How scared he is when these are performed on him and as i lay there I'm not surprised. Im nervous myself and I know what's going on. I understand. He doesn't.

The man began to cover my face with a mask to shield my eyes from the red beam and my neck to protect my thyroid then adjusted the bench and my headrest. Once he was done he walked out of the room. Not long after he left, the machine started up and the bench I was laying on begins to move inside the big donut. It shuffles back and forth and within a few minutes it stops moving. The loud sound of the machine is still running and I lay there waiting to see the man and be given my next instruction. Minutes passed and still no sign of him and I was beginning to get very nervous. A flash back of when Jayden was first ever CT scanned ran through my mind...

After a horrific ordeal with a canular being inserted in his arm that caused blood to cover his arm, the towel that wrapped around him to stop him moving, and the doctors clothes, a new doctor arrived put it in then off we went for him to be scanned.

the walk from the emergency department to the radiology department is a blur in my mind today but i know there was one. Clutching him in my arms still screaming and frightened from that horrific ordeal with the canular and now entering a room with the same machine I'm laying in today. Both of us nervous and frightened of what's ahead only Jayden more scared than I of the machine. He's crying, strange people surround him, he's been awake vomiting since the early hours of the morning and he has no idea what's going on.

Im asked to lay him on a similar bench as mine today only fitted out smaller for children. Crying his eyes out and screaming out for me to pick him back up I stand there patting his body and assuring him everything is going to be ok. wishing and hoping in my mind that I'm bloody right. Im gowned up in a heavy metal apron with a piece that wraps around my neck and if the situation isn't frightening enough for him it certainly got scarier then. He's confused, tired, and just wants me to hold him in my arms and thats all i want to do as well. The men working the machine that day leave the room like the man did at my scan today and the machine starts up. Its so loud, his face turns to sheer terror. I keep talking to him with my hand on his chest as i cant get closer and assure him its ok. Holding back tears from watching him so frightened and not being able to comfort him.

Once it was done I stood there in silence watching the men behind the window looking at the scan. The machine remained running just as it was today with me and it seemed like ages before someone surfaced to tell us what they saw. Somehow however I knew. I knew that they had seen something. Today as I lay there waiting for the man to come out I remember like it were yesterday when I was waiting on that dreadful day. Except today when the man finally surfaced he said "all done, all good". What I wouldn't give for that same response when Jayden was scanned. What I wouldn't have given for that. For the men to resurface and tell me they saw nothing, that everything was ok and you can go home.

I walked out of the centre today after my scan thinking about him and that day. Thinking about how much life would have been so different right now if the men had said it was all ok.

We just don't know what's around the corner and that day certainly turned ours around into the beginning of the biggest nightmare you could possibly imagine. Thinking back to those times is hard and I try very hard not too. Today however reminded me of that dreadful day and how I wish the result had been so different.
Of course I am relieved I'm fine but reminded how the result of a test can change a life so drastically.




Saturday

Jayden is still sick with a cold and we have been giving him Panadol to ease a symptom we are not completely sure of. Last night he was extremely restless in bed and very grizzly, I took a stab in the dark that it may be a headache, gave him some Panadol and once it kicked in he slept fine for the rest of the night.

This morning was similar in that he was fine for a couple of hours then became grizzly, very unhappy, lots of tears, dose of Panadol and shortly after, fine again.
He also has diarrhoea.

The poor little might came running (walking quickly as he can't yet run properly) into the kitchen to let us know he needed to go to the toilet. But we got there too late and he messed all over the floor, slipped in it and it was all over his legs and body. Understandably he was so upset and i felt terrible that i hadn't got there in time. We quickly cleaned him up and put him in a nice warm bath and he was soon feeling much better.

I'm adding this story about today because later when we visited our old Italian neighbours (jenny and Mick) they made us smile with their response to what happened. After telling Jenny about Jayden's mishap, with Luke standing next to me adding "yes, poor Jayden", Jenny looked at luke and me and said "don't worry, when you slip in shit it means lucky!", she added "you should by a lotto ticket". my son luke was quietly giggling his head off because Jenny said "shit" and i just thought it was hilarious that she had such a positive spin on it.
but i wont be buying a lotto ticket. i will be hoping with all my might that if it does mean "lucky" then the luck we receive will be in the form of a clear scan on Tuesday and clear scans forever! No amount of money is worth more than that.







Thursday, 11 April 2013

Jayden has another cold. Damn it. Just when we thought he finally got over the previous one it seems he has another one.
At least I hope it's a different one.

We went to the doctors today just to check everything out. I actually booked the appointment initially for myself as last night I had some scary dizzy spells. Not fun. i woke up this morning still feeling the same way, heavy head, room spinning when I stood up too fast. i think I'm just in a constant state of worry and anxiety and often something that may be small becomes so much bigger in my head. I don't know?

the verdict from the doctor was low blood pressure/vertigo. however he suggested we do a CT scan just to rule out anything more sinister which he assures me we wont find. Obviously hoping he's right.

While we were in there he checked Jayden out as well just to be sure everything was ok. Common cold, no need for antibiotics- thank goodness as he has had a lifetime of those. We also spoke about his immunisations as he missed a few due to treatment. Not in a hurry to do that but he said he would contact Nick to find out.

Speaking of Nick I still haven't heard about the results from the sample. But I guess that will take some time.

Have a weird head feeling going on lately with these dizzy spells and its definitely making me feel uneasy.

It's hours later and I'm laying in bed with my little man to my right and my other little man to my left. They are both asleep and both snoring because of their colds.

Luke came home from his afternoon play today unwell. Spiking a temp and miserable. Definitely home from school tomorrow. Which I love and so does Jayden. I really should have homeschooled my kids.

I went and saw a psychic yesterday. Not something I would normally do but from the advice of a lovely friend I did. I never went expecting my fortune to be told or a magic wand waved at me but I was curious. I'm at that point where I am willing to try anything that may ease the pain of this journey. I feel as if I'm searching for something, something to hold on to in some way to give me some sense of peace. I know I won't stop till I find it, if I find it.

Remarkably she was accurate in most of the reading. Just a couple of things that were slightly out. She was a lovely lady and I'm glad I went. I'm glad because she was lovely to talk to, she spoke positively about Jayden, and she told me she believed he was going to be ok. I love to hear people say that even if she may be regarded as a "nutta" by some. She made me feel better for the time that I was with her and showed me another way of thinking, which made it worth the trip.

I was with her for over an hour an so much was covered its difficult to put it in just a few words. what was really interesting though was what she said about me was virtually word for word what the psychologist said that I saw the other day. I must be so transparent.

Im not happy with the time I've spent with Jayden these last couple of days. For some reason i have felt very restless and haven't been able to really sit with him and focus on being with him. We are almost always have together as he rarely leaves my side but i just don't feel like I've been present. My mind seems to be racing with things and stuff and its driving me nuts.
Sometimes i think i choose to think about all the other stuff and busy myself as much as possible so i don't think about what saddens me the most.

But doing that is truly exhausting. Constantly battling my emotions by keeping my thoughts busy so I don't fall in a heap.
I told my neighbour today that when I go to a counsellor or the psychic I went to the other day, I find myself balling my eyes out before they even open their mouths to speak. It's as if as soon as I'm given permission, out it comes. I know I need to do it and I feel better for it after but, its exhausting.

My little man on the other hand doesn't keep anything in. His emotions are right out there on his sleeve and when he's upset, you know it and when he's happy, he smiles the biggest smile. He has the most beautiful laugh in the whole world as well and when I hear it I just want to laugh with him and often I do.

It's 5 more days until his next MRI and I'm so nervous. I'm no more nervous than the day before that and the day before that. Sadly that means I'm just one big bucket of worry everyday.

I'm hoping with all my heart and every breath that I take that it will be ok.



Tuesday, 9 April 2013

Playgroup

Jayden went to his first Playgroup today. It was at the Telethon Speech and Hearing centre.
Jayden's lost hearing in his high pitch sounds due to chemotherapy and needs to wear hearing aids. While there is no background noise and you are close to him he hears fine but when he goes to school neither of those things will be happening. We therefore know we have to work towards getting his hearing aids back in. I have to say it breaks my heart to do anything more to him, and it worries me that kids will look at him like he is different even more so than they already will with his bald patch at the back of his head and big scar as well and his difficulty in running, jumping etc. but it's a small price to pay so he can learn. And all I want to focus on is him actually getting to go to school. That will be a great day, to see him get to wear a school uniform and be in school with his brother. I do hope with all my heart I get to see that day.

So we went to Playgroup yesterday and Jayden loved it. So did I. It was a small group, which was even better and all the kids and parents were lovely. It is always nice to be around people who have challenges in their lives with their precious children and just 'get it'. They know nothing can be taken for granted and it just makes you feel not so alone. Their children may not have a life threatening disease like Jayden but they do have their own challenges. Cochlea implants, hearing aids and other challenges. Really lovely kids and parents.

We were there for the morning where Jayden got to do plenty of activities which he loved and on our way home he fell asleep in the car. No surprises there.

Our friend and hairdresser came over later in the day to cut everyone's hair and Jayden was due to have his first ever haircut. however, it didn't happen. He just didn't want to get it done and none of us were going to push the issue. So we will just wait till next time, no biggie.



It's the next day now and Jayden woke up his sprightly self as always. We had our cup of tea together and snuggled up on the couch to watch children's program's. I love this time. As I sit there I think of how precious he is and how lucky I am he is sitting next to me. That I can feel his skin next to mine, his heartbeat, hear his voice and see his beautiful smile. Every inch of him and him being here with me I am grateful for. I soak up everything about him and hope with all my might I get many many more years with him. I read again last night of a child passing with this disease and my heart sank. I know so well what we are facing and its so hard to remain in the now. I want to enjoy every second and I believe we do but in my head I am truly struggling. I don't think there is anyway of truly coming to terms with all this and I guess that's something I just have to except. Live the unknown and accept it as that.

He is now sitting down playing Lego and so happy in his peaceful little world in his head. So content building blocks on top of one another and no thoughts of anything else but his tower. One by one he builds and with his hand he makes an imaginary man and chats about him climbing the invisible stairs to the top, his fingers its legs and up he climbs to the top.

I love him so much. With every breath that I take I love him more. I truly hope he gets on top of this dreadful disease as his hand does his tower. that he smashes it within him and we never see it again. That he is one of the 10%. That thought is the only thought that gets me through each day.



- Posted using BlogPress from my iPhone

Monday, 8 April 2013

Rottnest pics

We are home from our weekend at Rottnest and I wanted to post some photos.
Below: layla and mum ready to leave








Jayden all tuckered out asleep on my lap at the beach.




Jayden giving his brother a cuddle at the restaurant, beautiful. Loves his bro.




Digging a hole at putt putt




Boys at breaky








Jayden, danny and Luke waiting for dinner.




On the slide at the park




On our way back home.

Beautiful weekend, wonderful memories, hoping for many more.

Saturday, 6 April 2013

Night wake

I've just woken up, in the middle of the night, again. I'm anxious. Just when I thought I was beginning to get a handle on things something jolts me back into this nightmare and I'm laying in bed wishing l could shut it off.

I'm away with my family, joined by other families on a weekend camp. Not in tents but cabins on Rottnest Island. I should be asleep, we've had a big day but I'm not.

Sleep is definitely a key factor in trying to cope with all this and when I don't get it, it makes it even harder. I've been tossing and turning for ages now and decided to write my thoughts down in the hope of getting back to sleep at some point.

We are away on a camp with Camp Quality, which is an organisation that brings families together of children with cancer on Camps such as this one and other social events. We haven't met as many people as I had hoped but we have had a wonderful time as a family. Missing the home comforts a bit but loving the time spent with my family without worry of daily chores and stuff. Not that I worry too much about them these days anyway.

My sister came with us for the first night as Danny had to work but he joined us this morning and she returned home.

Since We've been here we have met a few new people. Parents of children whom have been in remission for quite sometime. Different cancers, mainly leukaemia. Through loads of research they have now been able to get great results with leukaemia and these families are evident of that. I have to say it made me sad. Happy for them and their beautiful children as they all seem to have found a place now where they can breathe easier but really sad about Jayden's prognosis. One mother told me that the trial her child went on had a 93% success rate. I sat there thinking, shit, we are at the other end of that statistic. 10%. I know how damn nice it would be if we were given a 90% chance rather than a 10% chance and i hope with all my might every second of everyday that Jayden is in that 10%.

So now I'm laying here wishing And hoping one day I will be on another of these camps, ten years on with Jayden. I can t help but be doubtful. That when statistics are thrown at you like that it sometimes feels hopeless. No matter how many councillors I see they can't change those numbers. They can help me to cope with them but they can't change them.

I always said there is no such thing as a good cancer when your talking about your child in that same sentence. They are all crap. And they are. But as I lay here now I wish my son had of got one with the odds these parents were given for their children, a 90% chance. I wish I could have been going through this mess with the confidence that he had good odds rather than crap ones. I'm not sure how different I would feel, maybe just as crap but I'd hope 'better' would be a word I could use to describe it.

I'm listening to everyone sleeping, we are all in the same room, the kids in bunks and Jayden in bed with me. He has struggled a bit this weekend as he wasn't able to have a decent nap during the days and they have been full off things to do. So a few cranky moments, typical of a two year old but always worrying for me.

I'm constantly watching him like a hawk for any signs and when he's tired and miserable I'm worried he's got something else going on. His cold is still around but it doesn't seem to stop him but as he lay in bed tonight with me I thought he looked really unwell. It's no doubt because he's exhausted but I will never stop thinking the worst. Comes with this horrific journey.

I'm not sure what I was expecting from this weekend and thats not to say it hasn't been great because it has. thank goodness for this organisation that runs these camps and the volunteers that help to keep it running. truly beautiful people. but I guess I had hoped to meet someone with a similar situation. Maybe they are here and I just haven't met them yet and maybe what I'm looking for may not be in that person but rather someone I've met already. I don't know.

I do know I'm constantly searching for some respite from this nightmare. Whether it be a medical article with good news on Jayden's cancer, or a chat with someone who can help me breathe. A councillor, a friend, anything. Is that me trying to get back to the head space I was in before this nightmare? Probably. Still wishing we were the family we once were? No doubt.

I don't think I'll ever stop wishing we were that family. Never stop wishing we weren't living this nightmare. Always wishing i could breathe again as before. But also knowing there is no way out, or going back. and instead now desperately seeking ways to cope. Ways to manage this life without turning into a complete basket case and damaging my children's lives In The process. Trying constantly to reflect on my days and making them better where I can so that my kids can live as normal life as possible.
Challenged daily to find ways to keep picking myself up when I'm knocked down. Sometimes finding it all too damn hard and collapsing in a heap and sometimes just scrapping through. But always searching to find ways to make it easier, more manageable but often left wondering if that's even possible.

One things for certain and one thing never changes and that's this nightmare. It's always there. We live under a constant shadow of uncertainty about our sons future and all we can do is find ways to cope with that. We can't change it and thats really hard to face. to have no control of it, change it and make it better for our precious little man. Always trying to focus on making his life and my other two kids as beautiful as it possibly can no matter how long. No one can truly know how hard that is without walking these shoes.

This weekend I'm amongst many parents who have walked these shoes and continue to do so. All of us hidden amongst the crowds, no one ever really knowing what each of us go through daily. But we live all the same. Get about our lives the same as others. the only difference is the feeling we have inside. i cant speak for others but for myself its pain of the uncertainty, its pain of the prospect of losing your child. his every smile, laugh, tear, cuddle warms my heart but also tears it in two with the thought of not seeing that smile, hearing that laugh, wiping that tear away or feeling that warm cuddle again.
That's what keeps me awake at night and that's what Im desperately trying to find ways to cope with. Because that's what's so damn hard to live with.





Friday, 5 April 2013

Councillor

I went to see a man today. The wonderful man I spoke to over the phone sometime ago that lead me to see the kinesiologist, whom I would have known nothing about if not for a lady who wrote to me on Facebook. And I would have not looked for this councillor had I not had a conversation with another wonderful lady before. How things happen can truly make you ask the question "coincidence, or meant to be?"

So today I finally got to sit down and speak with this man. The very first time I spoke to him was over the phone and I just knew from that conversation he was worth seeing. I could not have been more correct. I've seen a lot of counsellors in the past after my mum passed and since Jayden was diagnosed but none were like this man I saw today. He managed to dig up stuff in me I never knew was there. I couldn't even begin to describe the hour and a Half session I had with him, only to say it was well worth going. I know it isn't a fix but its a start. It's a realisation of what I need to really try and focus on and although its all easier said than done, its vitally important to my son and my children. It's a need to let go of the past, leave the future alone and to focus on the now.

One of the things he asked me to do though and I haven't been able to yet and quite frightened to, is to write a letter.

He told me to write my son a letter as if he has already passed and tell him all the things I would want him to know and would want to say to him before he went. Once I've done that he wants me to put it away and from that moment on say hello to my son and start life again so as to know every second from the moment I put that letter away is a true blessing. Difficult.

It's the next day and I still haven't written that letter. In all honesty I don't think I can. The thought of it alone is way to upsetting so too actually do it, I'm not sure I can.

I'd like to see this man again and I will but will have to wait until I can.

Jayden has still got his awful cold and I'm wondering if that will ever let up. i heard from Dr Nick yesterday regarding Jayden's tumour samples as we asked him some time ago if we could get a second opinion through CHOP and he had organised for that to be arranged. We expected it to come back as the same findings but still wanted to pursue it for peace of mind and we thought it would help with any further studies there.

Anyway he Wrote back to let us know there was some costs involved and that from what they can see from the test that have already been done the diagnosis is correct. bummer.

I also asked him if he could get Jayden's MRI moved earlier to the morning and it seems they are all going to be in the morning from now on. Yah for that. Although not sure when they were going to let us know that. Never mind as we do now and that's good.

I'm sitting in the car at the moment whilst Jayden is sleeping and for a change its not too hot. I know I have to get moving soon though as otherwise I'm likely to overheat the engine.

We are getting organised today to go to Rottnest Island for the weekend with Camp Quality. Very excited about it as we haven't been on a camp with them before and we have heard its a lot of fun. The kids haven't been to rottnest before either so they are very excited.

Trying to focus on the now, always difficult but trying all the same.




Wednesday, 3 April 2013

Miraculously the little mouse survived the night and we picked him up from the vets yesterday. Much to the delight of Luke and Layla. Jayden wasn't too fussed but he didn't really know what happened and he never saw the state the mouse was in when we took him to the vets.

We have decided he needs a new name now though, possibly something like " lucky!"
There has still be no sign of the other one but we would all prefer to think he has joined a wild mouse pack and will live happily ever after.

It's morning and Jayden and I are enjoying our cup of tea together on our own. Everyone is still asleep. He's still unwell with this damn cold and I'm really hoping it will be gone by the time he has to have his MRI. We received our letter from the hospital yesterday to confirm date and time. Frustratingly he is booked into the afternoon. Fasting a two year old is hard enough but manageable if its through the night and in the early hours of the morning but for the whole day,... Not looking forward to that.

Off to the councillor again today, but this time the man I spoke to that works along side the Kinesiologist. Think he practices it too, not sure what to expect but hoping it helps.



- Posted using BlogPress from my iPhone

Tuesday, 2 April 2013

Pet mouse drama

Pancakes for breakfast with spelt flour, no sugar and back to our healthy eating after an easter full of chocolate. fortunately for Jayden he's not a chocolate fan and would rather mash it up and play with it than eat it. Me however, well that's an entirely different story all together.

Jayden woke up still yuck from his cold he has been suffering from these past few days, although you wouldn't know it with his big smile still beaming all the time. He's very congested and now a cough too.

Danny has woken up with it now too and my goodness - man colds... Do I need to say more??

Its evening now and I'm tucked in bed with my two boys. very tired and looking forward to sleep. hopefully it comes easily. I had a really lovely day with all my kids today. after what i wrote in my blog last night i really tried to make a conscious effort of spending as much time with each of them as possible.

I took them out to the shops in the morning as danny was at work. We purchased a few bits and pieces then jumped back in the car to get something to eat for lunch but on the way to the cafe Jayden fell asleep in the car so we went home and ate in and watched a movie instead.

He woke later miserable and only after I gave him some Panadol did he perk up a bit. I have to say this cold is actually starting to worry me. I thought after a few days it would start easing up but it's definitely getting worse. I hope it has nothing to do with anything more sinister.

Jayden joined us in watching the movie and unbeknown to us while we were doing that our sneaky dog managed to knock Luke's pet mice cage of the wall we had it on out side, crashing it open. We assume she then spent some time chasing them as Unfortunately for one she was caught, tortured and barely alive when we finally realised what had happened.

it was truly traumatic for my son luke who was sobbing hysterically. i calmed him down put the wee little mouse back into its cage and together we raced it down the vet. we still have no idea what happened to the other one as it was no where to be seen.

Luke was so upset and cried all the way. i looked at his little face and my heart just ached. i thought about life and death and how tragic it is for such a small person to have to deal with it so young and not really understand it. As if he hasn't had to deal with enough already seeing his brother so ill. in a way i felt that his huge outburst of emotion for this little mouse was a lot of emotion kept inside him from the past year thats been. He was just so very upset.

we walked into the vet and when the nurse saw his little mouse, all sopping wet from spit and huddled in the corner of the cage her face dropped. i thought "oh no". she took us into see the vet and he picked the mouse up gently in his hand, luke still sobbing next to me watching. the mouse moved around a bit and the vet decided he should keep him there overnight to see how he will go. he didn't want me to take it home incase it died over night and luke would find it that way in the morning. That was exactly what i was thinking too so i was relieved when he suggested it.

as we said our goodbyes too the little creature my heart ached for my son and tears began to stream down my face. I hate seeing my kids upset and to watch my boy so worried about leaving his mouse behind and so devastated about the thought of losing him was truly crushing. Luke has such a big heart. He reminds me if my dad, both my boys do. They are huge sooks. Particularly Luke. He has so much empathy in his heart for others and animals. Never have I wanted a little mouse to stay alive than I did for this one as we walked out the doors of the vet. .

As we laid in bed tonight luke and i talked about his little pet and Luke spoke about that when she comes home, can we get her a new friend. When I suggested she may not come home he would have none of it. I left it alone as I wanted him to have a nice sleep, dreaming of seeing his little mate again. But I was inspired by his refusal to give up on his little mate, he truly believes he's going to be ok and that's a good thing. Regardless whether he will be or not he just isn't going to think he won't be. He did keep saying how much he felt sorry for him for what Lucy our dog had put him through and I have to say absolutely so do I.

Luke and I had only had a conversation about life and death a few hours earlier before the mouse was discovered. I had just parked the car out the front of the chemist to go pick up a prescription and Luke came with me. He said to me when we were in the car "what happens when you die. Do you comeback one day?" This is a very tricky question for me as I really don't know how to answer it . But I did tell him that I believed you go somewhere that when you are there you are happy. He said " is your mum there". I told him I believed she was and that she's with me also a lot of the time we just cant see her. He went on to ask me how she died and if I missed her. It was a very deep conversation, one that I wondered what sparked his train of thought. Either way once it finished he was onto cars and trucks and "trashies" in no time. If only I could move my train of thought so easily.

So now I'm laying in bed, no photos to post and its the first day I haven't taken any in ages. Which was nice. It meant I didn't have my phone on me all the time and I just enjoyed my kids.
Both my boys are snoring seemingly in tune and I'm looking forward to joining that song.


- Posted using BlogPress from my iPhone

Monday, 1 April 2013

Easter cont.

Sitting in my lounge room with the TV on but not really watching anything. Everyone's in bed and as always I find myself alone with my thoughts. If I focus on our Easter it was undoubtably the best ever. Not because of what we did or where we went but because we were together. Knowing what it's like to not be together for Easter makes being together so precious. What we previously took for granted we are so very grateful for now.

Watching the kids faces in the morning when they saw their treats was priceless. Jayden's was complete surprise as it really was his first Easter, certainly the first that he will remember and was aware of. Their excitement of hunting for Easter eggs that the Easter bunny left was pure joy to witness. All three with their little bags, running around the house looking for eggs. Of course Jayden had the upper hand as he had me helping him but they shared them all out in the end anyway. Beautiful moments that will collect in my mind forever as beautiful memories.






I sit here now thinking of him today, of all my kids. Thinking about the video I took from Easter in the morning that Jayden luke and i watched before bed and realising it was mostly all of Jayden. Worrying That I'm spending so much time making memories with him that I'm forgetting to do the same with my other two kids.

I love them all so much and I wish I could spread that love out evenly but there is no doubt I focus so much of it on Jayden. Trying so hard to soak up every second of him because i worry about a future without him.

Everything about this journey is far from normal. Everything about it has changed everything about me, including my mothering. Before this I know I would have been more attentive to the other two, I know I would have. Now I'm so consumed by fear of losing my son one day that I'm trying to squeeze in as many cuddles, time and love as I can with him. I worry I don't do it enough with my other children as well.

Being with my children is where I find peace, where I'm at home, and where life has meaning. To even imagine losing one is truly crushing beyond belief and to know there is that possibility is The nightmare i live.

I know I shouldn't think about the statistics, believe the odds and just live for today. But today is no longer the normal day it use to be and today is a struggle to get through without a tear.
It is getting easier. Not the pain or the fear but living with the two. It's learning how to live with it. Learning how to manage each day and get through it without falling apart.

I now know a friend who has lost her precious boy to this dreadful disease and not a day goes by that I don't think of her. Of how she gets through each day. Im so scared of what has happened to her will happen to me. I received a message from her today and my heart broke into a thousand pieces for her. I don't know how she can live the rest of her life without her son. I know that she will, she's strong and a fabulous mum, but I don't know how she will.

This is truly a dreadful journey for any parent to travel. For those of us who still have our children a sense of guilt precedes. We are reminded every morning how lucky we are and to never take that for granted. We watch our child's every move for any change in movement, speech, etc, for every second of every day. we count down the days till the next MRI, stressing about the results long before the MRI has been done. Sleepless nights, maximum anxiety and pain that has no true description. It's our life now.

Jayden's MRI is coming up soon and I'm petrified. I wish that there was some way I could check him everyday so that I could breathe that day rather than wait three months in a constant state of anxiety that increases as the day approaches.

I went to the park today with my boys. I ran around with them, chasing them. Sliding down the slides and pushing them in the swings. Some healthy time spent looking after myself which I'm most happiest doing with my kids. But with every happy moment a dark cloud looms. One that stays above me that no matter where I go its there.
I can only hope my kids don't see it in me. Hope that they never know or feel this pain.



It's late now and I'm off to bed To snuggle up to my little man. To hope with all my heart and soul I get a lifetime of cuddles from him and all my kids. To see them all grow old together, have children and watch their children hunt for Easter eggs. If i were to get an easter wish, that would be mine.