Monday, 31 March 2014

Kindy days

Yesterday and today Jayden and I went to his Kindy. He is just loving it there and so am I. The ladies that work there are wonderful and I feel like I'm made some truly beautiful friends.

Jayden hasn't made any friendships himself but he's not actively trying too as he is so happy with all the toys and activities there for him to do.

We went two days this week as my wonderful friend bought her rabbit in for the kids to see (for Easter). She came with her son On both days and we came with her. Her son is Jayden's friend and Jayden was very excited to show him around his Kindy. Really beautiful. So proud of him.

I went and saw the psychologist at ward 3b today as well. A much needed visit. Had a wave come through this past week and today was the first day since it started that I feel like I'm coming out the other end of it. Managing better. Eyes still sore from lots of crying but feeling better for it.

I haven't taken as many photos like I would normally and feeling like I need to catch up. Will be doing that later.
This photo below I took last night of Jayden in the bath. He insisted on taking the tube in with him. So funny. Love my little man. He has the most wonderful sense of humour and makes us all laugh often. He had us cracking up at the dinner table last night with his antics. So blessed to have him in our lives. All the kids. They are just amazing. Love them all.




To know of a woman who has lost a child is devastating, to sit with her and listen to her story is beyond heartbreaking. Her story will remain with you forever. For it will crush you to the core.

Her grief will be with her, forever. There is no end to her grief. A mothers grief for the loss of her child, she will take with her, to her grave.

To see the pain in her eyes as she describes her loss is truly unbearable. The sadness in her heart, the confusion in her mind. All I wanted to do was change it for her, for them all. To reach up to heaven and bring their children back. I watch and listen with pain in my heart, it aches for them and for my own child. My biggest fear, they are living. My fear that I will one day be telling my story to them , fills my mind with dread and overwhelming sadness. The desperate plea I hear inside me over and over. Please, please, please don't take my son.

I went to bed that night after being out for dinner with women whom have suffered the unthinkable. and couldn't sleep. Their stories playing over and over in my head. I cried myself to sleep. I cried for them. For me. For their children. And most of all, for my son.

Constantly grieving for what once was. The normal life we all once had. The happy life. The life that didn't have childhood cancer in it.

I don't know how anyone survives the loss of their child. I look at the faces of the women that have and I feel for them so deeply. To wake every morning has got to be harder than they have ever known possible and to just live each day without their child, incredibly painful.

I'm so scared. I try to be strong. I try to just live in the moment and be grateful but deep inside I'm so damn scared. So petrified of losing my son. I want to be able to hold him forever and I'm so scared I won't be able too.

I love my little man so much, all my kids.

Tonight like every night after we read books and turned out the light, he asks me to cuddle him. As I lay snuggled up to him he slowly falls asleep. I lay there watching him. His beautiful little face. His innocence. I want to be able to hold him forever. I want to be able to watch him grow old. Let him drive me in his car that he so desperately wants to be able to do.

I'm so damn scared.




Thursday, 27 March 2014

Looming MRI

I visited a beautiful friend of mine today whom is also travelling a difficult journey with her child.

When I'm with people who get it it's nice to be understood. We are able to go to places in our conversation that I can't go with others who don't understand. Tears were shed by both of us with no feelings of uncomfortableness. Just the knowledge that we were being understood and we knew each other's pain all too well.

I often don't realise how much I hold in until I'm in a situation where I feel I'm "allowed" to talk about everything. Then it comes out, flowing. even then, I fight it to hold it back and only allow myself to let a little bit out. For no other reason than I'm scared. Scared to let it all out because I know how painful that is and I don't want to feel that hurt. So I allow a bit out, release a small portion of the emotions I work so hard at everyday to keep within me. And no more. The rest is kept Deep within me. I know with each passing day I get better at holding those emotions in but I also know a day always comes, that I can't. The emotional wave that crashes through, with no notice. No warning. And knocks me for six leaving me raw and vulnerable all over again.

Jayden's next MRI is on the 10th of April and I know I'm feeling it. The anxiety, stress, and riding the emotional roller coaster. I feel like I'm hanging in by a thread. And the slightest thing could break it, leaving me in bits.

***************

I was out all morning running errands and when I got back home I was so happy to see my little man. When he heard me coming through the door I could hear him shout my name and then here him running, he appeared from the lounge room, arms outstretched and jumped into my arms. I love my little boy so much. So, so very much.


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Wednesday, 26 March 2014

Hearing test

Small talk, something I once could do but now really struggle with. Id often rather say nothing sometimes than discuss stuff that's irrelevant in the big scheme of things.

It probably doesn't help at the moment that my mind is elsewhere.

Yesterday Jayden and Luke went for hearing tests at the Australian hearing centre. Jayden had to have his checkup and I took luke for moral support and also I had some suspicion his hearing may not be the best.

Luke was a wonderful big brother and diligently went first then encouraged Jayden with his turn. It was the first time Jayden had used the headphones so I was really glad I bought Luke to show him how it's done.






They both did the exact same test and they both scored well. In other words, their hearing is fine. The lady testing them was bemused and couldn't explain it. When I asked her if hearing could repair itself she said "no ". Then she said with a worried voice "you haven't been making him wear the hearing aids have you?"
That got me a little concerned and very relieved that we didn't insist on him weAring them. We both sat there for a while confused and she apologised saying she doesn't know how this happened.

Of course its great news that his hearing is fine now, but I can't help but feel a little uneasy about it.

We were told after the first round of mega chemotherapy Jayden had lost his high pitch hearing and so the chemotherapy dose was halved for the next round. After the next round he was tested again and again he had lost further hearing (apparently ).

I know you can only make decisions based on the facts you have at the time but when it comes to my child it's imperative that We as his parents, always get it right.

hearing aids were made for Jayden at a huge cost to the government and fortunately we didn't insist on him wearing them. Had we insisted, we would have been told yesterday to stop putting them in, and he may have found it difficult to adjust as everything would sound so different. Fortunately that wasn't the case And I'm glad we went with our gut feeling and didn't insist on them. We knew he wasn't living in silence, his speech was good and so we had no incentive to put him through anything else that was going to upset him.

Im very grateful that his hearing is fine, I just want to always be sure we made the right decisions for him. Each decision was so hard during his treatment and we live with them everyday. I still torture myself with worry about whether we made the right ones with each and everyone of them. So when I find out decisions were made on false information it makes me feel a little uneasy. But I am very happy he hears well and doesn't need his hearing aids. I can only hope and pray he gets a lifetime of hearing the world around him. Will always hope and pray for that. A lifetime. For all my kids. Love them to bits.


On an entirely different note. When we got back in the car after the hearing test we had a discussion about the dog that was barking from his balcony at us. Beautiful dog and we all thought he was cute and debated what we thought his name would be. Luke then said if he had a dog he would call it kiak and it would be big. And I said "would you like a big dog if we got another dog ? (As we have two small ones)" he replied "actually no mum I think id like a chihuahua" (his sister really wants one of them). While this conversation was going on Jayden was diligently listening and then pipes up " I would like a giraffe! And then we could climb up his neck and slide down his back". Hilarious. Had a big chuckle about that and thought how funny it would be if that's what he had asked for when the make a wish team came over !


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Tuesday, 25 March 2014

Yesterday's post that I forgot to publish...

Jayden, Luke and I went to the Make A Wish family funday in Rockingham today. It was held at an indoor playground and the boys had a blast. Apart from a couple of falls Jayden had a great time. He also got stuck at the top at one point and couldn't work out how to get down but a wonderful volunteer from "make a wish" was in there in seconds. Amazing the volunteers that were there. Truly beautiful people, so grateful for them all.

Magicians were there, lots of yummy food and a full lolly bag to take home. Both boys made sure that they didn't forget Layla. They got a lolly bag for her and Jayden won her a toy playing the games. So cute. Luke also asked the magicians to make her a pink teddy from the balloons they were manipulating. Gorgeous. Love my boys.

Am so tired now. But very grateful I was able to treat my boys to a great day thanks to Make A Wish.

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Sunday, 23 March 2014

Jayden went to his Nannas house with danny today. I stayed home with the other two as Layla had a lot of homework to do and Luke wanted to stay home as well. I would have loved to have gone and Jayden really wanted me too but only one of us could go. Nanna is Danny's mum and I'm pretty sure she would prefer to see her boy, so danny went.

It was a lovely opportunity to spend time with Layla and Luke but I really missed Jayden. For the first hour it was not too bad as I had plenty to do and so did Layla but after that when I sat and played games on the Wii with the kids I really missed his presence. When we later played board games I missed him sitting on my lap. I knew he was coming back soon but his absence became almost unbearable. And It wasn't long before I was texting danny to send me a photo and to ask how much longer he wAs going to be. Honestly, sometimes I feel like a crazy person. But the bond and feelings I have for my precious little man are so strong that it makes me feel crazy when we are apart.

Later when he arrived home I was so happy. so happy to see his face. Danny was holding him in his arms when they came in and when I saw him his arms reached out to me and we had the biggest cuddle. "I missed you" I said. "I missed you too mummy" he replied and gave me a bigger cuddle. Anyone would have thought we hadn't seen each other for ages but it was only a few hours. I was so happy to have him back.

He of course had a wonderful time and said it was his favourite thing for the day at the dinner table tonight. But his other favourite thing was coming home to see mum and Layla and Luke. I just love my little man.

My favourite part today was spending time with my other two kids and seeing my little mans face when he arrived back from nannas. It truly doesn't get any better than that.

Love my kids

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Friday, 21 March 2014

I went out to a quiz night last night with beautiful people and had a wonderful time. It was organised to raise money for "soc it to sarcoma" A Fabulous charity, and it was truly a great night.

I had had a few drinks whilst I was out and woke this morning not feeling too flash. but no way was my little man going to let me sleep in. He was not going to go anywhere without me no matter how much danny tried to coax him to let me sleep. Rascal. But geez I loved it. I loved that he wanted to stay with me and cuddle and chat. He didn't care as long as I paid him attention, too easy. Sore head or no sore head, he's too gorgeous to refuse.

My beautiful friend came over later with her little boy and spent the morning with us. Was lovely. Got to have an hour nap in the afternoon then was woken by my little man jumping on the bed with excitement of being allowed to wake me up. Just love that alarm. Best ever.

Kids to be picked up from school, always so happy to see them home. Love it when we are all together.

Later when I put my little man to bed I was so very happy to be doing exactly that. Laying on the bed with him reading books, chatting in between, having a giggle at the funny pictures and just being together. I only missed doing it for one night last night but it felt like longer. So happy to be back doing it again tonight. So damn grateful I can.

He was so cute. it was just me and him because the kids were having fun with dad and just precious, precious time. Doesn't get better than that, I'm certain.

I'm now about to go to bed which I really should have done hours ago but wanted to quickly write in hear first.

Jayden complained of an earache today. Got me really worried. Trying not to focus on it too much. Need to sleep....


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Wednesday, 19 March 2014

Mum

I'm sitting in a hair salon getting my hair done. As I sit here and look at my reflection in the mirror I see my mum looking back at me. A ping of sadness hits me. I miss her. I see I've aged but what I see more is her. I think about her. When she was with me. How much I miss her. How much I've missed her through this whole journey.

I laid in bed last night and cried. Then I rolled over to see her photo on the wall. Her face looking at me. It made me feel stronger. She would have hated to see me so upset. This whole journey would have been so painful for her to witness. I breathe deeply in and find the strength within me to stop crying. She would have told me to be strong and dig deep to find the strength to be the mum I need to be for my kids. Because they need me.

I remember when we were kids and her dad died and then her mum, she never stopped being our mum. She never fell apart, she never lost focus on us and she never gave up on us. I owe it to her to model that. To be that mum.

So as I laid in bed last night quietly crying I thought of her. I dug deep and got myself off to sleep. This morning as I sit getting my hair done I see her again but this time in me. She's there. I know she is and every time a wave comes crashing in I need to remember that she's there. Within me. With me. Always.

Kindy 3rd day

Jayden had his third half day at Kindy today and it was great. At first I thought it wasn't going well as he was very clingy and just seemed uncomfortable. Of course I wasn't worried about it being Kindy as much as I was worried about it being something else. So I spent the first part stressing as well. But when they went outside for outside play he suddenly perked up and was chatting away with the teacher. He wasn't worried that I was in the kitchen helping out and he carried on having fun. It was so nice to be able to see him enjoying himself. Just love seeing that.

We left at lunchtime, as he does just half a day and he was very excited to talk about it at the dinner table tonight. He loves telling his brother and sister about Kindy. It makes him feel like one of them, "a big kid". So nice to see him so proud of himself.

My anxiety was working at an all time high today and by the afternoon I was really struggling. I feel like I spend so much energy trying to fight it all the time and by the evening I'm exhausted, feeling depleted of energy and not much fun to be around.

Off to bed now to snuggle up to my little man.






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Tuesday, 18 March 2014

Washing hair

Tonight when Jayden took his bath I told him I was going to wash his hair. Obviously we have done this before but he's not very fond of it at all. He didn't want his hair washed tonight and wasn't shy in telling me so. As I sat on the floor near the bath and listened to him telling me he didn't want his hair washed I couldn't help but smile. I felt so very grateful. Grateful that he is with me and arguing with me about washing his hair, and grateful that he has hair, to wash. And oh how long it is getting. A moment of true appreciation.

I try to soak these moments up, really feel them for so often I get bogged down in fear and sadness that I miss them. The happy moments often blackened by the fear. When I catch myself smiling at him I often feel like crying. When I watch him doing normal three year old things I'm so happy but then feel so sad.

Tonight as I washed his hair I just tried to focus on how beautiful that moment was. That he's with me. That He has hair. And to hope with all my might that he has a long wonderful life, full of loads of moments he can cherish too. I hope that for all my kids.


Before I finish I also want to add what we did today...




A cup of tea in the morning...


A walk along the river.....


Peering over the jetty with dad


Making funny faces whilst waiting for some lunch.

And after picking up the kids from school and having dinner I got to watch my little man splash in the puddles out the front with me from the water that came from the hose I was watering the garden with. He follows me almost everywhere and plays with whatever he can find within a metre radius of me. He's so beautiful with his little voice chattering away and making a game out of everything and anything. And constantly chatting to me. His voice makes me smile. He makes me smile. Love my little man. Love all my kids. So proud of them all.





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Monday, 17 March 2014

Need to sleep. Have tried at least 5 times to begin this entry and failed. So am just going to post a couple of picks to some up the last two days.


Park time


Collecting rocks


Two little rascals in bed



More park time.

Actually the last photo was from Friday. And the others from Saturday. I don't have any photos on my phone from yesterday or today. They are all on my camera.

Yesterday we had a wonderful time at the river with a family we all adore. Really precious.

But now, I just have to sleep. Want to write more but i should sleep whilst I'm tired, as that doesn't always happen.

Love my family, love my kids. So grateful for them all.

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Saturday, 15 March 2014


First time in a while I reached for a sleeping tablet to go to sleep last night. Just didn't want to be with my thoughts. I didn't want to lay in my bed thinking about stuff and worrying. I could feel the anxiety creeping in and I wanted to run from that and just sleep.

I woke this morning feeling better for having some sleep but as the day progressed I could feel another emotional wave rolling in. Yesterday I had snippets of that feeling but today it stayed. I felt super sensitive and as things occurred during the day I knew I wasn't operating at a normal emotional level. I rarely do.

On the outside I know I'm doing well at making everything seem ok but on the inside I'm crumbling. There's no getting away from it and today that awareness struck me deep. That encompassing fear and worry.

If I keep myself busy enough I'm able to push it all back, but it's for only a short time it stays there and then rushes back in like a wave.
Jayden was not himself today either and the fact that I feel like I keep saying that worries me even more.

Every time I open Facebook I tragically read another child not winning this shitty fight against cancer. And I'm scared. Really scared. That ache in my heart that hurts like no other pain and the feeling that I can't take a breath engulfs me.
I hate it.

I put my little man to bed tonight and as he slept, I watched him. I have so much love for my little man, it hurts. It hurts so bad.

I love this time of the evening. When I'm not rushing around. We sit snuggled in the bed together, read books then turn out the light and chat, make funny faces and eventually he falls asleep. I then lay there watching him. Hoping with all my heart that I get to do this routine with him until he's too old to want me too and for so much longer after that. a lifetime. My heart aches so bad, for I want that to be true so much.


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Thursday, 13 March 2014

Grumpy today

Jayden hasn't had the best day today. He's been quite a bit grumpy and seems a lot, tired. I'm hoping it's just because he's had a busy start to this week but I can't help but feel extremely concerned.

Hoping he's ok. Always really worried. Just hoping he's just tired. Normal stuff. Hoping for that.

****************

I went to another nAturopath today and was really happy with him. Liked him a lot and felt he really knew his stuff. He didn't make any promises or unrealistic claims, just assistance. Happy with that. He never made us feel bad about treatment either and agreed we did the right thing for Jayden. Always nice to hear that.

I am now sitting waiting for Layla to finish school and missing my little man. Love it when he comes with me but today he wanted to stay home playing with dad. Also love to be able to go knowing he is so happy.



Picture of cuteness!

Love my little man.


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Wednesday, 12 March 2014

Jayden and i had a lovely morning at Hyde Park in Perth today. We hadnt been there before, so it was very exciting for Jayden and made extra special because he was meeting his mate and my friend there too!







he was so full of beans when we got there and was racing around to every piece of play equipment and then finally to the water park which he and his mate loved! They had so much fun in it and kept my friend and i laughing out loud. it was so nice to laugh. And even better to see my little man having so much fun. Really special.  

A little while Later we sat down to eat and not long after he became weary and wanted to leave. Cant help but feel a lump in my throat when he appears weary and the worry kicks in. I wish i could just put it down to normal tiredness but I cant. so happy to see him happy in one moment and worried out of my mind in another. Constant rollercoaster. Just wish we could just be normal. The normal we use to know. The one where we didn't have the constant worry and concern that we have now.

We came home and he seemed ok which made me feel a little better. the worry just never stops. with every beautiful moment theres the shadow of the fear and sadness.

Love my Little man so much and hope and pray with all my might that he gets to sit where i was sitting today and watch his kids run through the water, and laugh out loud. That would be a great day!


Tuesday, 11 March 2014

Jayden and I went to his new Kindy today.
And I didn't take one photo today. I hate it when I realise in the evening that I haven't taken a photo all day. It rarely happens and when it does I find myself worrying that I should have.

He had a great day at Kindy. I stayed there the whole time with him. Which I loved. I would go off into the kitchen and make a cup of tea every now and then and watch him from the window. He would be able to see me and it was so nice to see him playing with other kids. He's still nervous about me leaving and if I'm gone too long he stresses. It was just so nice to be there to reassure him and be welcome to do that.

The ladies there are lovely and were so kind to chat to me and make me so welcome. I found myself crying at one stage in the kitchen with them after speaking about Jayden. Every now and then I get a flicker of normality and when I'm swung back into reality it hits hard. It's then that I realise how much I keep inside, buried within me, just to get on with life.
Inside I'm so very scared and worried no matter how hard I try to portray that I'm normal. I'm not. I never will be. Not the normal I once knew.

We left Kindy at lunchtime and arrived home not long after. Had some lunch and watched a bit of tv and I tried to catch up on housework. Jayden is so beautiful. He follows me around offering his help and I give him an easy job and the two of us cleanup together. So cute. Love my little man.

I'm tired and need to sleep. Everyone's asleep but me and I need to join them.

Jayden really worried me this evening as he told me his head hurts and he feels sick. I gave him some Panadol and cuddled up to him tight. Praying. Hoping. Praying and hoping with all my might that everything is ok. That he is ok.

I love him so much and it's so hard not to be so frightened. I battle with these feelings everyday. Trying to remain positive, but so deeply scared. I love my kids so much. I just want them all to have long, happy lives. I so wish for that.



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Monday, 10 March 2014

I had an awful night sleep last night. Anxiety kicked in before I went to bed and I just couldn't sleep. I got up, wondered around the house feeling stressed and scared. Frightened in my own home. Alone. Alone in being awake, and feeling Really anxious, and worried. I finally got myself into bed and snuggled up to my little man. I laid there for what seemed like ages. Nervous , worried and scared. I hate it when I'm feeling like this and it's difficult to snap out of it. Almost impossible. Thankfully sleep eventually came and I woke feeling a whole lot better. But when I'm in it, it's horrible. It feels like there's no end to the feelings and the worry magnifies and takes over my mind and body . Awful . Really awful.

Jayden woke me in the morning with a huge big smile and I just love it. Love his beaming smile in the morning, all day and all night. Best way possible to wake up, a smile in front of my face. With every beautiful moment I feel a pain in my heart. The pain that contains the worry of the future. I try to push it aside and focus on the moment and enjoy it.

We had a beautiful morning spent with one of my dearest friends and her little girl. Lots of smiles, and happiness. Love this family.







We came home around lunchtime as Jayden was getting upset easily, and I knew he was tired. Always feel so sad for him when he's sad. But once we were home and after some nice quiet time he was back to his happy self .

He came with me to pick up Layla and we had lots of fun listening to the radio in the car in the carpark as we waited . Really love this time with him, just hanging out and having a laugh. Love my little man so very much.

And... I took lots of photos !















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Sunday, 9 March 2014

It's Sunday morning and the kids and I have been doing Easter craft. So nice to sit with them and enjoy making things that we will put around the house.



I've been up since 5:00am as Jayden woke early from a nightmare. He went back to sleep but I didn't. I just lay awake watching him. Hoping and praying that I get to watch him grow to be an old man. Worrying that his nightmare was of things of the past. Hating the thought of it all.

Friday the 7th marked two years to the day that Jayden was admitted to PMH. Two years to the day that we found out he had a tumour in his heAd. What I wouldn't give to have had the doctors tell us they found nothing and we could go home. But that wasn't the case. I will always remember meeting a family whom had a little girl and she too had a Ct scan that day, because the doctors were fearful of a tumour. But her scan was clear and she was sent home. I remember that day. Wishing we were them and that we could go home. So envious that we weren't. So sad we weren't.

I know I have to be grateful that we are all here today. And I am. So grateful. Grateful that Jayden is still with us, two years on, and hoping with all my might he will be with us for a very, very long time to come.

His next scan is the 10th of April and I'm already getting very nervous. Stressing about any little signs and even without any signs, I'm stressing.

We've had a good weekend. Always nice to be with the kids together.
On Saturday morning we had two ladies come around to interview Layla and Luke. They are conducting research on the effects on siblings of a child who's had cancer. The kids were both happy to do it and I think they were glad to finally say how they felt to someone other than me. And that someone other than me, wanted to know.

It took about an hour and I wasn't allowed to sit in but was still in the house doing chores. Both had a lot to say and hopefully helped these women with their research. Really important that families get to understand the effect something like this has on the other children. I know I don't know the half of it and wish I had of had some insight when this mess began.

After the ladies left the kids had swimming lessons (except Jayden) and then Nanna and grandad came over. Jayden loves those visits. All the kids do and we had a really lovely time. We all went out for a bite to eat at one of our favourite Italian family restaurants ( Luke and Layla are BIG fans of spaghetti bolognaise). We laughed we chatted and just enjoyed being together. The kids had us all in fits with silly faces and it was just a really beautiful evening.

Jayden especially knows how to make us laugh and he's at that beautiful age. He has these hilarious faces he pulls at the moment that makes us all crack up and he comes out with the funniest things.

*******************
It's much later now and I'm sitting in the bathroom as Jayden happily chatters away to himself and his toys as he baths. Such a happy little man .



We've had a really nice weekend and I just hope we get So many more. More than anything I want that. A lifetime with all my kids.

Thursday, 6 March 2014

Kindy and zoo

Wednesday

Today danny and I went and checked out a Kindy centre with Jayden. We had not planned to attempt Kindy for a long time yet but we just chanced apon this one recently. I picked up a flyer where Layla does tutoring recently and the woman that runs Layla's tutoring centre (whom I adore) highly recommended the Kindy.

So one day I thought I would give this lady a call (the one that runs the Kindy). My change of heart came from recent counselling at PMH. And a plan to work towards Jayden being able to happily mix with his peers. Happily, being the key word. I wouldn't mind so much about him going anywhere as long as he was happy too go there and I knew he was safe.

Of course I never expected to be doing this again for a long time yet. However after speaking to this woman on the phone I felt convinced I should at least check it out but with no intentions of sending him anytime soon.

Jayden was happy to go knowing I wasn't going to leave him and of course so was I. We set of and arrived to meet wonderful women and gorgeous children. The lady who runs this Kindy was wonderful. She agreed that this process should be taken slowly and was happy to have me come and stay everyday he is there for as long as he needed, should we enrol him. Music to my ears.

Well, he loved it. As long as he saw me there he was happy. I loved seeing him play with all the toys and do artwork, sit with the other kids to eat and just be "normal". Gosh it was nice. And he was happy.
We left after a couple of hours, with him of course and he was keen to go back again, as long as I was coming too. It was so nice to be somewhere where we were understood. I'm confident it won't take him long before he's waving me out the door and I'm so glad I can do it in no rush but in our own time. Really nice feeling.

So we are back there next Tuesday which I certainly didn't expect to be doing as we were just going for a look.

He made a robot while he was there and was pleased as punch.



Big achievement for my little man. So proud.

Thursday

Well I'm writing in this blog today and my memory of Wednesday (yesterday) isn't the flashest even though it was only 24 hours ago. Of course I remembered the Kindy moment as that was monumental and the other thing that springs to mind was major tummy pains. I'm hoping it's still this damn tummy bug that's in the house but whatever it is it's horrible. Went to bed super early last night as they were just awful. Couldn't help but think the worst and got myself all in a tether that it could be cancer. Hate that word and everything it stands for. Always going straight to it when I have a pain or my kids have a pain. Mental. Awful headspace in which I exist, honestly.

But back to today, which I remember clearly, obviously as I'm still in it. Would be extremely concerned if I couldn't.
Jayden and I met up with my dear friend and her son at the zoo today. Love these two. They are so special to us. Had a great day. Really lovely.
Jayden just loves hanging out with her son and squealed his name with delight when he saw him. God I love it when he's happy. He's been laughing a lot lately, best sound in the whole world! And I just love this woman. Very very special lady.

Here's some photos of today...























So wonderful to see my man experiencing new things. I can only hope and pray he gets to experience years and years full of new experiences.

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Monday, 3 March 2014

Tuesday back to school :(

I was woken this morning to kisses all over my face from my cheeky little man. A big grin from ear to ear on his face and a "mummy can we get up?" From his voice. Couldn't have asked for a better way to be woken. Love that little smile, voice and kisses. Just precious.

His older brother heard him too as he always does and we all got up together and went into the kitchen. It's a back to school day after a wonderful long weekend so rush, rush to get organised.

I did manage to however have time to sit and play Lego with Jayden before I took Layla then Luke to school.





After the drop offs Jayden and I hung out playing kitchens, Lego and watching some tv. I asked him if he wanted to go out somewhere or go to a park and he said "no mum, I just want to stay home and play with you". Bless. Love him to bits.

We did have to pop over to the school to pick up some books and while we were there we saw Luke in the playground. From a distance I hardly recognised him because he looked so small and so young. Then when I realised it was him it dawned on me that he is so little and so young. I think because they talk and walk like an older child we tend to expect more of them and at the end of the day he's still such a little boy. I love him so much and I hope he forgives me for continually struggling to parent him. I so often feel like I get it wrong with him and I want to get it right so bad. Hopefully it will all fall into place one day,soon.

We said hello to him and I gave him a big cuddle and kids then we left for home. Hated leaving him and felt like scooping him up and taking him home with us. Damn school.
I am feeling lately like we desperately need a family day together. Must arrange that soon.

It's the afternoon now and I'm sitting in the carpark of Layla's school waiting to pick her up. Jayden is so good about me leaving now that it's wonderful but also a weeeny bit sad. I think whenever my kids grow and start to need me less I feel a little sad. Really happy to see them grow up and very proud but as my dad always says " it's always nice to feel needed". Of course I know I still am, but still. And it's really comforting to know he's not upset while I'm out. Really proud of him for getting to that point.

So I'm now sitting in the carpark writing in this blog.
Layla had a lot of assessments on today and looking forward to hearing how she went. Just to know she wouldn't be as stressed as she was this morning will make me happy. So much is expected of kids at such a young age and when I think about all the dramas you can run into as an adult, wouldn't it be nice just to have everything simplified even more as a child.

We have had a good day thus far and besides this damn tummy bug still lingering around and Luke's vomiting episode the other night everything is ok. I worried last night that he would vomit again, but, thankfully nothing.
Will always worry myself crazy over everything Jayden and my other two. I know that. Today for instance I thought Jayden's eye looked different and I panicked, finding myself eyeballing him so much and so closely that Jayden ended up asking me what I was doing . That snapped me out of it and I didn't see what I thought I saw again. Honestly, it's enough to send me crazy .

Bell just gone , she will be out soon.
Will finish now.

hoping and praying always, with all my might that all three of my kids have long , healthy and happy lives. Will alwAys wish for that.




cool breeze


I Took the kids over to the park again today. Beautiful day. Sun shining and a cool breeze.
Jayden loved it.
He was running around everywhere. And although his run isn't the best he still runs and I'm so proud of him. He won't be an athlete but he has a go and I love that.

As I watched him run down the oval laughing as he went, I smiled. For the first time in ages , I felt the breeze on my face. And it felt good. It felt good to see him running and it felt good to feel good about that. The little things. The curls returning in his hair, him running on the oval, all so very special, all so very important.
Love my little man.






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Sunday, 2 March 2014

"He's just thrown up ", danny comes up to tell me. I've been sitting watching tv as everyone else slept. I couldn't sleep so I went and sat in front of it for a while. I immediately jumped to my feet "who has ?" I said back to him, feeling the panic in my voice. "Luke" he says as I follow him back to the room. A sigh of relief came over me but concern still deeply imbedded in my mind.

I go to my big boy and give him a cuddle, stroke his head and tell him everything is going to be ok. Danny had already cleaned everything up so I just got more towels and a clean bucket ready for any more vomits to follow.

I went to the toilet to wash my hands and stood there remembering a time when gastro was the only thing I would think of. When Jayden was vomiting so often and all I knew then was. " it , must be a bad case of gastro ", Of course those thoughts did change but I remember when they were just so simple concerns. Now I'm standing here worrying or I should say "knowing" that vomiting isn't just a sign of gastro . I know it's unlikely in Luke and thankfully we he had an MRI not long ago so I can relax a little. But it doesn't stop the thought brushing my mind.

And then I think how much I wish when Jayden wAs vomiting in the beginning, that it was gastro too. God how I wish it was.

The little things take you back and throw you in that place of sadness so easily. I'm worried for my big boy but I'm just so devastated my little man didn't have gastro. God I so wish he had. I so wish his symptoms meant something simple like that, and his first ct scan he ever had, showed nothing.

A simple normal occurrence like my child throwing up, sends me to a place in my head that I try so hard to shut down. Worry. Concern. Sadness. Nightmare.

Feeling like I just want to curl up in a ball and cry.

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The weekend

Saturday morning

As I hung my clothes out on the line today I could see my dear old neighbour. Just the top of his head but it was enough to see his sadness. Hunched over and moving slowly, I knew he was missing his wife. It is wonderful and fortunate for her that she had such a long life and for them both to have had so much time together, but that doesn't make it hurt any less for him. It was so sad to see him there on his own. She would have hated to see him like that.
Wish I could take his pain away.

Layla's guinea pig died last night. He had surgery at the vets as they discovered a huge gall stone in his bladder. But sadly he didn't survive the night. Layla is crushed and doesn't understand why she's losing so many. However the ones that have passed recently are old. But so sad for her. She loves her animals so much. I'm proud of her in that she's able to let her emotions out. She cries when she loses them, is very sad for a time and then she's ok again. It's so healthy to see her work through the emotions but sad to see her have to have them.

Inside I'm so sad for my son and spend my days suppressing those emotions in order to get on with life. I try to live in the moment and not think about the future but somedays that's impossible. But as I watched my neighbour this morning and my daughter after discovering her guinea pig died I also ached for them as well. Their pain may be different but it still hurts. When I'm caught up in so much sadness of my own it's difficult to see others pain. But it's there and I saw it today.
Lots of hugs to my daughter today, plenty of TLC.

In the afternoon we discovered Layla's other special guinea pig was pregnant so that definitely put a smile back on her face. Nice.

Jayden did some lovely painting today. Just love his pictures. He takes so much time with all the detail when he does them. Lots of concentration going on with picking the colours and where to place them. Just love watching him get busy with it. So clever.






I hope with all my might he gets to grow to be what he wants to be. A painter, a policeman, whatever he desires. I hope he gets that.

Sunday

It's Sunday night and the end of another weekend. We had a really lovely weekend where on both Saturday and today we had guests. Saturday was spent with a beautiful family we have met through this journey and quickly grown to love and Sunday was spent with Danny's brother and his family.
The kids were so happy to spend time with both.

Luke's worrying me quite a bit at the moment as he doesn't seem himself at all and seems to be going up and down with feeling unwell. I can't help but raise the alarm bells within me when I see my kids sick. Obviously Jayden sets them off screaming louder but I still stress with the other two. So as Luke sat on the couch today looking really pale, inside I was thinking the worst. That might seem ridiculous but that's just how my mind works now and there's no way of stopping that train of thought.

He went to bed early and didn't eat much for dinner. Really worried. Jayden is doing ok and had a great day yesterday with his mate and then another great day with his cousins. He loves it when we has visitors. So nice to see him happy. He did complain that he wasn't well too and of course panic sets in. I've just put them both to bed and they took no time at all to fall asleep. I hope they both wake feeling better.





Jayden and I playing with silly sunnies!


Jayden at the park


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