Thursday, 29 August 2013

Beads, viruses and socks

Haven't written in a while. Sometimes I feel I'm writing the same stuff over and over again. That surely there should come a time that I think and feel differently. Sometimes I think I do, that I'm ok. But an incident, thought, or moment brings me back to the reality that its all really damn hard.

Yesterday Jayden finally had that damn bead x-rayed. they had to xray the bead alone first (as i had a spare) and once they realised they could see it they did Jayden's sinuses. Fortunately there was no sign of it but they couldn't guarantee that it wasn't there. Honestly, for once I would like some guarantee for something! Anything in fact when It comes to my children's health. But i have had enough worrying about it and we are happy to just forget about it, finally. And we know we have had far bigger things to concern ourselves with.

Not long after arriving back home with Jayden, Luke had spiked another high temperature which wasn't unusual as he had done so for the last few days and been home sick because of it. But what made it different was this peculiar rash that appeared on his leg. I tried not to panic but my immediate thoughts are of the worse so I rang our GP to bring him down. When we walked outside he complained of the light hurting his eyes and then i was even more concerned. I drove with him, quietly panicking to myself that he has meningococcal disease and stressing about getting him seen to ASAP. We arrived there and were able to wait in the nurses station. His rash by now was getting bigger and he was looking sicker and I was struggling to contain my feelings of sheer panic. I sat there with him thinking to myself "surely I can't be that unlucky! Surely I can't have another child get something that's really bad! Surely not?" But inside I was truly convinced that's exactly what was happening. No longer do I just worry about a temperature or illness, now I jump from worry to panic, in a heartbeat and think the ABSOLUTE worst. It's awful. Awful for my kids I'm sure as mum is on high alert and stress mode often, and awful for me because it often prevents me thinking straight at all!

Fortunately I have an understanding doctor who knows me well enough now to not ride me off as a 'nut case' and take all my concerns seriously. Thank god for him.

Luke didn't have what I had convinced myself he had, thank heavens and instead what appears to be a similar virus to Jayden. He's still unwell and currently sleeping in bed with Jayden.

When we were at the doctors surgery and i was worried senseless that he was indeed really sick the emotion of guilt swept over me. Guilt for not being the mum I think I should be for Luke and Layla. I've spent the last two years focused on Jayden and gathering every second of his life so as to not miss a single bit of it but not doing the same with Luke or Layla. 100s of photos fill my iPhone and computer 99.9% of them of Jayden. I sat next to Luke thinking "what have I been doing?". I'm missing their moments, even though I know I try hard not too, I do. So absorbed with what's going on with Jayden, his every move and word and not doing the same with the other two. A friend mentioned the other day that she's so surprised that they don't resent Jayden. I hope they don't.

So I'm up in the kitchen writing in this blog when i should be in bed, sleeping also. Normal life I have no longer but normal things go on all the same. My ability to deal with them isn't the normal way I would have and trying to work with this " new normal way" is hard if not impossible. I'm constantly worried or expecting as the saying goes "for the other shoe to drop". For something else bad to happen.
Awful feeling.

Wish i could step out of my brain for a while, and just not think.

I am going to end this blog on a positive note though. I need to and I know there are a lot of positives in my life. Jayden and Luke are both sleeping and although Luke has a virus they are here with me and they are safe. Layla is well and also with me and safe. Luke and Jayden played beautifully this morning even though by lunchtime Luke had had enough as he was struggling with his virus. Layla came home from school happy and my dad and his partner stayed for dinner to celebrate an early Father's Day. That was really nice. We gave dad his present and all the kids made him a card which he loved. It was really lovely. Lovely to spend time with family as always. Lovely to see my dad. Got to be happy about all those things. I am. Just wish I could not worry so much. But I know it's normal, I know I'm not a nutcase, and I know this is just the way it is. My "new normal".





Jayden yesterday, playing with his shopping trolley! Loves this toy.




The kids giving "gumpy" one of his presents 'socks'. Think the boys faces say it all.... What the?
Lucky gumpy likes them.




Jayden, his smiley little self.
Love my kids.

Monday, 26 August 2013

Much better frame of mind today, thank goodness.
Jayden got through the night fine and I finally fell asleep after midnight.
He woke up sprightly as ever and you would have never known he had a stressful evening. Kids are truly amazing little beings. Oh to be a child again. I'm assuming the doctor will contact us today but not sure what will be done. It was a tiny bead and could be anywhere now.???

He's well, he's happy and so are my other two beautiful kids and that is what I intend to focus on today.

It's much later and I'm laying next to my little man sleeping. No one saw him today as promised but he seems fine. I was given quite the run around today by the hospitals and to say I was frustrated would be an understatement. By 1:00pm I still hadn't heard from anyone so I gave the ENT department a call. They told be there was no ENT clinic today and no one could or would be seeing Jayden today. Thought that was odd considering they told me last night they would be? was a little concerned as to whether I should be concerned. So I rang Pmh ENT department and they said they should have got the referral instead of Freo as he is a child and it should automatically go to them. Now I'm really confused. So I rang Freo ENT and asked them if they could fax the referral to PMH so Jayden could be seen by them. They said they would. An hour and a half passed and they still hadn't sent it. Many phone calls made in between, eventually found out it was sent but they didn't know the process from there. So I found out the direct fax line, got back to them and asked them to fax it directly there. They said they would. Still no fax then finally someone from PMH chased it up for me. Honestly, they are clearly understaffed and overworked but as a mother it's difficult to understand why your child can't get the medical attention they need and if they don't need it then tell me so. I don't want to be chasing up referrals if I don't need to worry. I certainly don't want to be making a hospital visit either unless its absolutely necessary and I know Jayden doesn't either. Amongst all this I had a phonecall from school saying Luke was sick and I had to pick him up. Poor little mite. He was very unwell and it looks like tonsillitis so off to doctors tomorrow.
Rock on summer, have had a gut full of all these germs.

Jayden's had a good day. We went to gymbaroo and besides a huge tantrum when we left all was good. His tantrums seem to be more frequent lately and I was beginning to think something was up. As I always do with the slightest change of behaviour. The hardest part about them is dealing with them as his parent. He's been through so much and there's an enormous amount of guilt that is attached to that. When he's upset he usually gets what he wants but there are some times where you just can't give him what he wants or he just can't have it his way. It's these times that I find so incredibly difficult. The calm approach with patience is no doubt the best approach but sometimes the situation just doesn't allow for that. Like today when we were leaving the recreation centre and he didn't want to go. Eventually of course we had to and I had to leave with him screaming in the pram. By the time we got to the car he was really going to town. Then getting him in the car was the low point for me. He resisted, kept climbing out, it was pouring with rain and I kept putting him back in and he kept climbing out screaming. I really was at a loss. At one point I was ready to cry with him and throw my hands up in the air. i think for any parent this situation is difficult but when your riddled with guilt and you know if you get really upset with him its going to crush you afterwards, well then its just even harder. And to not get upset is almost impossible. i did growl at him and after the fourth go, finally got him in his seat and belted up but was left feeling like crap that we had that moment.
Poor little man. He was no doubt tired from being up all night at ER and just super cranky about it. More tantrums followed today but fortunately they were at home and we didn't need to be anywhere so we could ride them through.
There's certainly nothing easy about parenting and there is certainly nothing easy about this journey.

I am grateful however that I don't feel like a crazy person today and I'm managing. I went for a walk this afternoon which helps too.

So now I'm ready for sleep and hoping it comes easily. My little man quietly snoring along with danny (not so quiet) and Luke.

Love snuggling up to my little man. Love hearing and watching him sleep. So grateful we are all together. :)

Sunday, 25 August 2013

A bead

Sunday morning, woke fine. Little man smiling at me at 6:00 am. Both him and Luke greeting me with cuddles. So why did I find myself so browned off?
Not with my children or the day, just generally Fed up. Feeling like I just want "out"for a time, a minute, an hour, a day. Not from my kids or family but this damn emotional roller coaster.

As the morning progressed I could feel myself getting worse. Just wanting to explode, scream and cry at the same time. Layla Jayden and I joined danny to watch Luke get presented with his medal for footy but Jayden wasn't his happiest. Sometimes I think he feeds of me. That when I'm at my worst he feels that and he's not the happiest either.

We went to Danny's parents for lunch afterwards which was nice but I could feel myself really struggling. Normal event, normal day, but feeling anything but normal!

Just simple conflict now is almost impossible to cope with as well, a disagreement, anything is so much harder to work out or work with.

Just felt like I wanted out, like I needed to run.

Now I'm sitting in the ER department with Jayden waiting to get a bead removed.
When we got back from Danny's parents house Jayden had a massive tantrum and decided to push a couple of beads up his nose. Panic kicked in and I rang the hospital whom told me to get him to the closest Hospital. Wishing we had of gone to PMH but went for the closer option Fremantle. The same hospital that sent us away numerous times when we presented with Jayden when he was sick prior to him being diagnosed finally at PMH. No need to whinge about that now even though I am in a huge 'feel like a massive whinge' mood.

It's much later now and Jayden is sleeping soundly next to me . To say I'm a little confused about our hospital visit would be an understatement. We were told to go there by a nurse over the phone. We arrive there and were told we would be a priority. Eventually get seen by a doctor who tells us that because he can no longer see the bead it must be quite a way up so he's likely to have to go into theatre and have it removed as leaving it there presents a serious danger of him inhaling it. So, we wait while she checks with the ear nose specialist then comes back to tell us we can go home and they will ring us tomorrow. so I'm confused, naturally and ask if I need to be concerned over night? She says to me to just keep an eye on any change in his breathing? I said but i might sleep through that? Her reply is "oh". So doesn't look like I will be sleeping much tonight being on super alert. Confused much? Yes.

I know this is a normal thing kids do and i know this is no biggy considering what Jayden has been through, yet i find myself in complete and utter panic mode. super stressed, super worried and super feeling like I'm going around the bend.
i don't even think I'm making any sense right now.

I had an awful moment in the waiting room before we went in. Jayden and I were looking at a magazine. In it was an advert for redlkite which is a wonderful organisation that helps families with children with cancer. for a second i was feeling in a normal moment with my son, then i see this advert with a picture of a little boy in it thats fighting cancer and my heart drops. the anxiety rushes over me and I'm feeling so stressed with a huge need to burst into tears. It just hits me. I've spent a day keeping everything in check and a picture brings it all rushing back, smack in the face. How I managed to keep it together I don't know.

So not the best sunday we've had although we have seen a whole lot worse and I shall never forget that.

Saturday I had a wonderful day with the kids and danny but today I just couldn't get there. It's like that saying "she got up on the wrong side of the bed", that was definitely me this morning. Really browned off and the day (in my head that is) just didn't get any better and now I'm laying here stressing about the bead that's up my sons nose. I wish that was it though. And I was quickly reminded at the waiting room today that its not. That as I looked around at all the other people I wished my concerns were only the bead up Jayden's nose.

I'm trying to remain positive, about everything. But it really is so very hard. I muster up the energy to get through the days enjoying my children and soaking up their smiles but some days I'm so emotionally backed up that thinking positive is bordering on impossible. And having an evening like tonight that has an event that takes us back to the hospital where it all began makes me feel quite ill.
My beautiful little man. I so want to wake up to his smile tomorrow and enjoy my day with him and my other kids without the worry. Just breathe and stop worrying.




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Kids having fun at Nannas today.


Luke got his medal for footy today!!!! yah Luke. so proud. love my big boy!

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Thursday, 22 August 2013

One of Layla's guinea pigs died yesterday. Was very, very sad. He was not at all well so we took him to the vet and we had to make the decision to put him down. If we hadn't he would have been in a lot of pain as his stomach had a massive cyst in it which was seen under an X-ray and he would have eventually died.
When I came out of the treatment room without him in my arms and then had to tell her as she stood in the waiting room by the window." he has to be put to sleep", it was truly awful. Her little face crumbled and the tears poured from her eyes. I wrapped her in my arms and I felt the tears stream down my face. The whole scenario loaded with so much emotion, much of which had little to really do with that dear little guinea pig. We stood there cuddled, neither of us wanting to break the hold. eventually the vet came out and asked if she wanted to say goodbye. we went in and Layla saw her little friend for the very last time. very, very sad.

We drove home in silence with the empty cage in the back and all I could think about was my kids. How special each and every one of them are and how very much I love them. How the thought of them hurting hurts me beyond words. Seeing Layla's little face so sad and lost, cut me to the bone. truly gut wrenching.
I love her and her brothers beyond words.

It's the next day and even though she had a rough start to the morning, Layla went to school. I've since picked her up and taken her to Funtracks and she's much better. So nice to see.

Its much later and I'm laying next to my little man. he took longer than normal to go to sleep and I'm laying worrying, yet again. the slightest thing out of the normal and I'm attaching it to something I pray and hope will never happen.
Feel like a crazy person.

I've had a yuck few days. Sad ones but I'm trying hard to focus on the good things. Like watching the kids this evening playing outside together. Altogether. Laughing, enjoying each others company. The best sight and sound in the whole world.
I hope and pray I will continue to experience that joy of the three of them together for many, many years to come.


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Tuesday, 20 August 2013

I never really know what starts the emotional wave or when it ends, if indeed it actually ends. But I feel it, when it washes in unannounced and when I'm feeing i cant get out of it.

I first noticed the cracks when a dear friend asked me how I was yesterday. It wasn't a "how you doing?" Passing comment but a real "how are you". I felt the wave fill me inside and I wanted to cry. I didn't. Instead I babbled about how I'm managing and just getting on with it and even said "learning to live with Things how they are", and a whole lot of other complete bullshit rolled off my tongue in a completely failed attempt of answering the question correctly.

So was that the beginning of this wave? Or am i just getting better at pushing it back until it gets too much. Today i kept it together in the morning while friends were visiting and not just for others but for myself. I try hard not to fall apart because it hurts. it hurts to hurt and i just try so hard not to go there because it hurts so damn much.

i went to Luke's class today to do writing and found myself watching the kids and thinking how much i wish Jayden had the futures they have. that he wasn't facing such an unknown one. and how damn scared i am about that.

Luke was great. Really happy I was there and I'm glad j went and spent that time with him.

By the afternoon the cracks were getting bigger and i was truly struggling to keep it together. i knew i had to get out of the house and Danny and Jayden were having such a wonderful time playing cars i used the opportunity to do something for myself. i went and had my eyebrows waxed And got more than i bargained for. Whilst in there I could smell the scent of baby powder and I started to think of my mum. Of having a mum. What a mum means. Snuggled in her arms and knowing while I was there everything was going to be ok. Childhood memories of having her to turn to when I was sad, being held by her as a child and at that very moment wishing I was that child again and her telling me "everything is going to be ok", and most of all, believing those words. That's all I want, those words "everything is going to be ok". As I lay there thinking this and the beautician quietly waxing my eyebrows i let go of a few tears and they ran down my face. She no doubt thought it was the waxing but no wax can hurt me the way my thoughts do.

I left there feeling like I needed to let that wave of emotion go. A big cry, scream, something. I got in the car, started driving and I felt my mum was with me. Again. Lately I feel her a lot and its nice but it scares me as if she actually is around, why so much now.

I sat there behind the wheel saying to myself over and over again "I just want it to be okay, please make it okay". I heard inside my head what i think she would say "it will be okay. No matter what happens, it's going to be ok". Whether it was me creating that thought or her I don't know but I then said out allowed. "God I hope so, I so want it to be okay, I can't do this if its not ok". I balled my eyes out. big heavy tears ran down my face.I just wanted so bad to be that child again, in my mums arms and for everything to be ok.

When I got home I couldn't pick Jayden up quick enough. Gave him the biggest hug and didn't leave his side except to cook dinner.

I was still struggling so Before dinner was served I went for a walk. A much needed one. I really struggled for the first five minutes and found myself not being able to hold back the tears again. The very thought of the future is so overwhelming that i feel like i spend most of my days and nights fighting back the thoughts. that every last bit of energy i have is spent trying not to think about the " what ifs" . then after a while it eventually comes crashing through. the emotional wave and engulfs me in those thoughts and I'm left trying to gasp for air. The tears flow but I'm trying to keep them at bay.

More strides and they began to ease off. By the time I got to the top of the hill where my mum and I stood on our last walk I felt like I was breathing better.

I glanced at the spot where we stood and for a brief moment thought to stop. i didn't . i kept walking. Like I know my life to be, I just have to keep moving. No matter what I have to get up in the morning everyday and just keep moving. I want so bad to fall in a heap sometimes but I just keep moving. I want someone to tell me everything is going to be ok, they don't and so I just keep going,
Maybe that's what that message in my head was about "everything is going to be okay no matter what happens" because I just have to keep going.




- yesterday jayden and i spent the entire day together and it was magical. these were some of the photos we took.









I love my little man so much. God I love him so much. Please god don't ever take him from me.

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Sunday, 18 August 2013

A look

It's Sunday night. Everyone's asleep and just for a change, I'm still up. This time I've decided to take a bath. One, because I'm absolutely freezing and two, because I'm feeling like I just should do something nice for myself.
Can't remember the last time I took a bath, as opposed to a shower but when I was pregnant I lived in the bath. Couldn't get enough of them then. And every time I've had a bath since then I think of that time.
Huge, pregnant and sitting in a bath that seemed to be the time when I could truly relax my muscles and just sit.
Pregnant with Jayden springs to mind. Easiest pregnancy of them all in that I managed emotionally the best with his pregnancy. My body however had a completely different story to tell but that's for another blog.

I look at him today and he's grown so much. Slowly changing in his face from a little toddler to a little boy and everyday showing us the new things he can do and words he can say.

Tonight we all went out for dinner to our favourite no frills italian restaurant. Just can't beat this place and the kids love it too.

Jayden was sitting across from me which is a first as he's usually wanting to be right by my side but tonight chose to sit next to his brother. Loves his brother. Aspires to be his brother. Everything Luke does Jayden wants to do, only better, faster, for longer, or higher, whatever the case may be. Fiercely competitive and never ever gives up trying.

I watched him tonight through the conversation going on at the table and he gave me a look. A look that for a split second I saw in it an older person, a man. I sat there staring at him as he continued joining in with the others babbling away oblivious to my stares, and I felt that very familiar feeling of sadness.
An older person, a man. It sadness me greatly to know Jayden's chances of ever being that older person are so very slim. I watched him and tried to just be grateful for the moments I have right now and for all the ones I get but it's terribly hard not to hurt about the future.

Tonight as I lay next to him as he slept I thought again about that look. About Jayden as an older person. How I know that he would be wonderful, handsome, funny, charismatic and above all kind. He would be a good person, I know that for sure. He has such wonderful role models in his dad and both granddads, his uncles his brother and everything he's been through. He would be a good person, a well liked person and someone who would know doubt in my mind, help people.
It's so damn unfair that life has dealt him this crappy blow. It just doesn't make sense to not allow him to become that person.

So as I sit here in a now very hot bath thinking of my little man, reflecting on the baby he once was and the now little boy he's become I hope and pray with all my might I see that 'look' again. But on the face of the man he becomes. On the good person he will be, and the adult son i love and always will. God, I hope I see that.






At the park and in the cubby house that Layla built with cardboard boxes. Can't beat a box for a toy.


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Friday, 16 August 2013

It's Friday and today my son Luke had his year one school assembly. My dad and his partner stayed last night so Jayden was able to stay home with them while we went and watched Luke's class performance. It was so nice to see him up there and for both Danny and I to be there watching. feel so proud of my big boy. Do love him to bits.

I have to say as assemblies go it was without a doubt the best one I've been too. Their performance was great and they also had a guest "rapper" that had previously visited them come and do a guest appearance with them. Really wonderful. Luke was so happy, great to see. My daughter also received a merit certificate and participated in the inter school cross country today. So proud.

It was truly so nice to enjoy those moments with them as I had missed so many last year. Really proud of them both.

Because I knew Jayden was happy at home with dads partner who Jayden just loves we were able to stay until the finish. And when we did get home Jayden was busy still playing and very happy. Nice.

So nice to see him well. He's still not 100% but heaps better than before. I got a phonecall from our GP today to tell us from the bloods and X-rays (which we originally thought showed nothing) that Jayden has viral bronchitis and to just keep a close eye on him. It always amuses me when they say that. "Just keep a close eye on him", or "watch him carefully for the next few days". Really? Is there any other way that I watch him?? Honestly no child in my family gets eyeballed as much as he does from me. If I'm not staring at him I'm kissing his forehead to check for temp or asking him if he's ok. Or snapping a mlilion photos of him. Close eye on him? i take "having a watchful eye'  to the extreme.

Having him ill these last few weeks really sent me into a tailspin ( as one mother who knows, referred to it in a comment). Terrible feeling. Taking him for his X-ray which he screamed all the way through then off to bloods and all he kept asking was "can we go home now". He's been through so much already and to subject him to anything else is truly, just pure emotional torture. He's always so worried he's not going to be able to go back home. That he may have to stay in a bed and it panics him. Really sad.

That afternoon when they couldn't do bloods and I had to come home with him stressed me and him out so much. when we got back home he was fine again but i was peaking. I didn't know how to calm myself down. My dad was at home when I got home and he knew I was really stressed. Helpless as to what to say to me He instead took Jayden to the park where danny and the other kids were. i walked inside, stood at the kitchen sjnk and just felt completely helpless to the anxiety that had completely overcome me. I couldn't get away from it. Every inch of my body was stressed, in flight mode but no where could I run from that feeling. I stood there thinking "how did I get through last year when I'm barely managing a virus ". It's like when he's sick all the emotions come flooding back from a time when this all began and the fear and anxiety come with it in the form of the biggest Emotional wave and I just felt like I was drowning. Awful, awful shit.

By the time danny and the kids came home I was managing, just. Danny knew I had come home stressed as dad would have told him and he gave me a big hug when he walked in. Never underestimate the power of a hug. Really needed that.

So now, two days later and Jayden seems like he's finally shaking this crappy bronchitis. Still sounds awful when he coughs, still not the best within himself but at least I know what it is and he's smiling and eating again. I'm still worried. I always will. i cant not.
Some days I manage but other days I just want to cry.
Today I just want to focus on the fact that Jayden is with me, all my kids are and they are doing ok. I am so very grateful for that.


Below is a sequence of pictures of Jayden in the car with me as we wait in the driveway of our fabulous ex neighbours house for her to come home. This is his face as he sees her car coming and his smile when he realises its actually her! Loves Aoife! We all do!





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Thursday, 15 August 2013

Fever free night

I'm so relieved to say Jayden had his first fever free night last night.

Yesterday morning first thing I drove him in to PMH to get his blood tested for all sorts of things in the hope of getting to the bottom of all these fevers. He had a chest X-ray the day before where they found nothing and I was really worried as to what was causing his illness. Virus, was up there in the big possibly, but it just didn't make sense that his temps should go on so long.
However this morning we are up and he's happy. He had no temp last night and his appetite is back. Was really concerned about that also. I am so relieved to have my well little man back. He still has a cold and yucky cough but I can live with that and so can he.

We haven't got any results back from the blood tests but I'm just so pleased for no temperatures and my smiley boy back.



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Wednesday, 14 August 2013

I hate seeing my little man ill and what ever is going on with him at the moment just doesn't want to let up.
It's 3am in the morning and I have been up with him again with high temps. He is now sleeping soundly with me laying next to him worrying like crazy.

We weren't able to get his bloods today as the lady at the blood place didn't feel confident doing it on her own so we are off to PMH tomorrow to get them done there, first thing.

I just want to know what's wrong. The not knowing is the worst and to see him so sick and so fed up with being unwell is excruciating.

His little feet are so hot. He hasn't eaten properly in days, weeks if we include the diarrhoea time. All so damn familiar.

I feel sick with worry. Just want this damn virus or whatever it is, and lets hope it is something simple, to just go the hell away. Leave my little man alone. Give him a damn break.

Need to get some sleep.
Easier said than done.

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Tuesday, 13 August 2013

Still unwell

He's still unwell. Will this ever let up? "Just want to go to sleep mummy".



Asleep on my lap.

Temperature last night, same as the night before. Panadol and back to sleep.

Woke this morning happy as always but deteriorated rapidly come lunchtime.
Very frustrated not knowing what's going on.
Urine sample cane back negative so next step is blood tests which he's having this afternoon.

Getting very damn nervous, scared and just want to know what's going on in his little body.


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Still unwell :(

Jayden is still not 100%. Yesterday we went to gymbaroo and he didn't participate in the songs or activities but preferred to sit on the mat with me. I watched him and had a feeling he still wasn't right but when we got to play in the gym you would never know anything was wrong. He Ran around like normal and had a great time.

Once it was over we walked to the car and he didn't want to walk but instead sit in his pram. We were going to go to the park but he declined and instead we got in the car to go home. On the way home I noticed in the rear view mirror his face looked pale. He was yawning and so I took the long way home so he could sleep. We went along the river and he wanted to get out and see the water so we stopped.







He was really enjoying the time down there and for a while I thought he was ok. We didn't stay long, jumped back in the car and again he looked pale. He fell asleep on the way home and I pulled up into the driveway of our home and sat in the car with him until he woke.

He woke not long after and wasn't happy and when I picked him up he was really hot. I took him inside and he had yet another scorching temperature. He spent the afternoon on the couch feeling very awful. It is so hard to see him unwell. We gave him Panadol and I sat with him, worrying, wishing he could shake this damn virus.



At one point he said "mum, i just want it to stop". of course he does, i know that and me too. he then said "will it mum, will it stop". i felt like crying . Yes, the virus will stop, I'm sure of that but everything else, i have no idea but i hope and pray every second of my life that it does. That only a virus is what we will ever have to worry about.

He came good again in the afternoon but last night woke with a high temperature once more. Now I'm really worried, although already was. I just don't operate on any other level than full rip worry these days. more Panadol last night. he woke this morning all chirpy again,



But by mid morning his temp was back. Of course by this time I have yet another appointment with our GP. Have really got to know him very well these last few weeks by the amount of visits we have had to him. He gave him a thorough check over and suggested we get a urine sample to check for urine infection. I hadn't thought of that as he has had many before.

While all this has been going on these last couple of weeks I couldn't help but feel a certain sense of déjà vu. The many doctors visits, the no answers and the forever being told "it's probably just his age, stuff ". Makes me feel sick just the thought of it.

I'm hoping its nothing more than a virus or urine infection but nothing will stop me worrying my self senseless.




His happy little face before bed. That's red texta on his belly. Has taken to drawing on everything including himself.

Hoping and praying my little man just has something simple.

Sunday, 11 August 2013

I can't sleep yet I'm so tired. Things keep going around in my head and I can't get them to stop.
So I'm up. Writing it down hoping once there out I'll sleep.
Not always the case but always worth a try.

Jayden is much better today but he does have a cough that doesn't seem to want to go away. It's not so bad during the day but at night it's much worse. As I tried to sleep tonight he was coughing and every time he coughs I feel my heart race and my breath stop. Waiting. Hoping and praying the cough doesn't follow with a vomit. That's how his vomits always started. Cough, then vomit. So my stress levels are peaking every time he coughs. I so just want him to be perfectly well.

As I lay in bed listening to him, worrying, memories rush through my mind. Memories never go, they stay with us forever. If its a good memory that's great but the bad ones I wish I could lock away in a box in my head somewhere and throw away the key. I thought of one of those bad ones tonight. It was enough to get me out of bed so i could just stop thinking about it. An incident in hospital with jayden that made me shudder, like all the procedures he had to go through. Pure torture and pure torture to witness. You never ever want to have to do any of those things to your child, ever. Not ever. And when you have, they remain in your memory bank forever as Nightmares that never, ever go away.

I know I can't change what happened but I wish I didn't think about it, relive it in my head and send myself crazy in the process.

I've been sick with the kids virus as well and and not having my normal sleep pattern doesn't help. I spent all day in bed on Saturday and that's truly a first for me. The kids were so beautiful though. Jayden didn't want to leave my side and they were all very worried. Love my kids. Layla said to me "when you are in bed so long we really realize how much you do". Beautiful.

Today fortunately with a dose of Panadol and neurofen I was up and doing as much as I normally would. Couldn't believe how much the house fell apart in one day but never mind was soon back to normal. So tonight I'm tired but not sleeping. Whether its my sleep pattern out of whack or just that I'm a super worry head. That every cough jayden has triggers a memory of the past. God those thoughts scare me. Scare me more than anything else on this earth.

I've had some more Panadol but thinking a sleeping tablet may be on the cards. So fed up with not just sleeping without thinking. Try so hard to do the mindfulness thing but my goodness, that's REALLY hard. I won't stop trying though.

Off to have another go.

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Thursday, 8 August 2013

Little sick man and new and old friends






Even though he woke with his usual beautiful smile today, my little man is very sick with a virus.
Has had high temperatures all night and day and is currently resting on the couch as I sit by him. Poor little mite. Hate to see him so unwell.
But I would have a virus ANY DAY over what he's already been through.




We are still not entirely sure that he is over his diarrhoea either as he had codeine to relieve the pain and I believe that can cause constipation. Only two bowel movements yesterday but hopefully it is the end and now all he needs to do is fight of this new virus.

Woke this morning feeling like I should take the kids out of school for this entire winter until all the bugs have gone as truly hate seeing my little man ill and his siblings ill. Really feeling Jayden has already had his fair share of illnesses!

Last night we were up with him heaps and it just breaks my heart. As I've written before, not because he has a virus but because I wish so much it was the only thing I had to worry about. When he is ill it makes me think of the possible future and that hurts like hell. I try not too as I know how important it is to live in the moment but its difficult to stop it crossing my mind. It enters my mind without intention and I sit with it for as little time as possible and then try to think of something else. To bring myself back in the moment and not to the future. Hard but I'm trying.

******

Yesterday when I was looking for something in the kitchen I found a bag of cards and letters that I had kept from when Jayden was diagnosed last year. I kept them because I knew one day i would be able to sit down, read them and take in what was written. I know when I received them I'm sure I read them but nothing sank in back then and none of it changed how desperately traumatised we all were and our only focus was on Jayden and getting him better. I hope that people understood that and I hope I did say thank you to all those that reached out to lend a hand and for their words of support at some point since.

Once reading some of them I began to feel bad about shutting so many people out. I know at the time I didn't know how else to deal with things and all I could deal with was Jayden getting better. My children suffered too with my absent mothering, emotionally and physically. I just wasn't there. I couldn't be.

i shut out people who were close and people who wanted to help and i realize now that there was no way of them understanding that. understanding my state of mind, my sadness, anger, confusion, sheer devastation, for not even I understood it.

There is no point of reference to go to when something like this happens to you in your life. It's like deep sea diving without a tank of air. You can't breathe, you have no idea how you get through this without the necessary tools that are required , because you have never had to use them before.
Fortunately those that were up for it stuck by me. I don't know how but they did. They road my emotional roller coaster with me and even though I lost a few very close friends on the way I gained the most special few I have ever had in my life.

Like every bit of change that occurs in our lives a need to mourn the past is normal. Something I spoke with to my psychologist the other day. Among a lot of things I mentioned was the hurt I experience about the loss of a couple of good friends. Whenever Jayden has an MRI and I don't hear from them the hurt returns. But like all change she explained to me, we mourn. That the emotions I feel for that loss of a friendship is normal, sit with it when it comes and one day it will no longer be there.

It was so nice to know as always that its normal. I know it's nothing in the big scheme of things and I know I have far more important things to be concerned with but as our life begins to get a little more normal the things I worried about before begin to rise to the surface. In someways that's refreshing, that I am able to think about other stuff for a change.

I also went through my email inbox which in the last year never got properly attended to and many emails I never had the time to read. I read a few last night and finally a year or so later was able to sit down and respond. There truly is so many wonderful people in this world. My dad always told me that "we always hear about the bad people in this world but there are so many more good people", he would say.

When we sit and complain about someone we should remind ourselves that there is so many people that are good and kind in this world. I know i do, as I have had first hand experience of that. Reading these emails reaffirmed that and I'm so grateful that through all this mess I have been able to experience meeting and knowing what I believe to be the truly most wonderful people in this world.

I'm so grateful for that.




And most of all I am grateful for my little man who through it all, no matter what life throws at him.... He's able to smile :)

Wednesday, 7 August 2013

Jayden had a shocking night with his diarrhoea and I can't wait to see the back of it for his sake. He was so very upset this morning after the umpteenth bowel movement and he so wanted it to stop. God how I wish I could put an end to the pain and every bit of pain any of my kids suffer. Truly struggling with seeing him like this. Luke is also still very unwell and spiked another temp today. Two very sick boys.

I've had to leave them with a very tired dad to come see the psychologist that I tried desperately to cancel but no answer on her phone. Poor boys, hope they all manage to cope while I'm out. Though I have to say I haven't been too good myself due to lack of sleep and worry for my boys.

So now I'm sitting in the car park as I arrived a little early. Ten minutes and I'm in. Don't really know what to talk about today as just want to go home and to sleep at the moment. Looking forward to bed tonight. Only hope the boys are well enough to get a decent night sleep themselves. Hate seeing them sick.

I'm expecting a call from the doctors with results from Jayden's stool sample and hopefully he can shed some light on this illness. Hoping its just a virus as the last thing I want for Jayden is more antibiotics! He has already had enough to last a hundred lifetimes!

Much later...

Got the call. Nothing nasty, thank goodness and he's much better this evening! Finally. So is Luke and hopefully all will be well tomorrow.

Had a really valuable session with the psychologist today. I was so pleased I went and came out feeling so much better than when I went in. Really love that lady. She just makes everything 'make sense'. So pleased about that as most times I feel crazy.

I'm laying next to my little man right now and he's sleeping peacefully. He's been such a little trouper through this awful virus. His strength always amazes me.

He said his first big word tonight! Went out in the rain with his brother, came back in laughing and said "I got saturated mum!". Loved it. Made us all laugh, as always.




Love my little man.



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Tuesday, 6 August 2013

Woke this morning feeling really anxious. No idea why specifically and tried to pin it on something specific but came up with nothing. Because there doesn't need to be something specific, it just is.

It's like waves. I get a couple of days where I don't feel so anxious then woosh, in comes that anxious wave and I'm feeling like I'm about to get dumped.
Awful.

We all got up late this morning and Luke's not well now, as well as having a sprained ankle. He spiked a high temperature and is now on the couch, poor little mite. So home from school today.

Danny's playing with Jayden at the moment as I get myself organised. Am writing now in the hope that letting out my concerns about my anxiety it will miraculously eleviate some of it. Doubtful, but worth a try.

I stood at the sink today doing the morning dishes and feeling so anxious that I just wanted to run. Get away from that damn feeling and just breathe.
I have my appointment with my psychologist tomorrow and am looking forward to talking this out with her, among other things.

It always makes me feel sane when she tells me that I'm normal, that what I'm doing and feeling is normal. that even though its crap and awful sometimes, its normal. I need to hear that. To be reminded I'm not an emotional nutcase but instead 'normal'. And normal is so good to hear when your living a completely abnormal situation.

When I have days where I'm sinking in the stress and worry of this journey it means so much for some one to reach out with words of support and encouragement. Often those people are strangers. I don't know why that is. But thank goodness for them.

Im not even sure if any of this makes any sense. i often feel sad that i no longer see the friends i use too because my life is now so different. But the people i have met through this journey are no doubt the most unique and beautiful people i have ever known. They understand and
Mixing amongst those that don't, truly requires an emotional strength that sometimes I just don't often have.

My friends from before have Their lives go on as per normal and mine took such a dramatic turn that there seems no way to relate anymore. like a huge wall went up between us and nothing can bring it down. It's frustrating, sad and above all lonely. . Even at home with danny I sometimes feel lonely as we relate to this situation so differently.

But the very special people in my life are the ones i had before that still manage to understand, say the right things and are just there. love them for that. now i know I'm waffling.


Much later..,

Jayden is still unwell with his virus and seeing him so uncomfortable and unhappy brings up so many emotions and memories of a time before. He was screaming in pain this afternoon due to his diarrhoea that seemed to have got worse so I took him straight back to our GP. He found that Jayden's bottom is torn inside and has prescribed some cream to ease that and codeine to ease the pain of the cramps. Poor little man, I really hate seeing him like that.

Its evening now and he's much happier and not in pain. Luke seems a little better too so hopefully they will both have a restful night sleep.

He's in bed now asleep. Layla helped me get him ready for bed and he is now snoozing. I'm laying next to him and I can hear his little tummy rumbling.



Above: Layla brushing his hair before bed. really loves her brother and he, her.


When I was at the doctors surgery today, waiting with Jayden I felt so very sad for him, for all of us. He was looking so pale, so sad and uncomfortable. I wanted to cry. Not because he had diarrhoea, but because I wish it were all we had to worry about. God I wish it were. I want so bad for that. I cuddled him on the chair wishing so much that this was the only thing we had to be concerned with. that once he beats this virus it will all be fine.

Hope is all we have and hope is what I cling to, that a simple virus will be all we ever have to deal with. God I hope for that.

Much later...

Luke is very sick. Has been up all night with a very high temp that I can't seem to get down. So worried. Can't help it. Difficult to ever relax with illnesses now, always dreading the worse. Hope he gets some sleep tonight. I know I will be laying awake worrying.

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Monday, 5 August 2013

The weekend


Really tired today, up all night with Jayden as he has had diarrhoea. He's had it for a while but it peaked Last night where we were up every half hour changing his nappy until after midnight. poor little man now also has a very sore bottom. Hate seeing him in any kind of pain or discomfort what so ever. I really think he's had his fair share and just don't want him to have anymore.

Yesterday, which was Sunday, We were meant to go to our niece and nephews birthday party but on the wAy there we had to stop to change Jayden's nappy twice and soon realised it was not a good idea to take a child with diarrhoea to a party. The kids all desperately wanted to go but we just couldn't risk everyone there getting Jayden's bug and it wasn't long before he was quite miserable with it as well.

He's had to go back into nappies because its been impossible for him to control his poos and hence a lot of mishaps that had been very upsetting for him and not too much fun to clean up for us either. But am happy to clean up messy poos when they are caused by a virus as opposed to doing it because of chemotherapy ANYDAY.

So today I am shattered and so is danny but we had a lovely weekend with the kids. Spent Saturday with the kids at the park in the morning then down by the river in the afternoon and then hung out at home. Really lovely. love spending time just the five of us. really special.









Danny and I went out with our dear friend Nadja and her equally wonderful husband that night and had a Really lovely time.

Danny's mum and dad looked after the kids for us while we were gone and had a lovely time also.
It was really nice to go out and know that I didn't need to worry about the kids as they were well cared for. Priceless feeling.

So for the first time in a long time I was truly able to enjoy a night out. Great company, great venue. Just can't ask for much more than that.

Was so happy to come home though and snuggle up to my beautiful little man. He was sound asleep and looked so peaceful. So happy to see his smiling face the next morning even though I was feeling slightly fragile. Just so happy to see him. Layla in true beautiful Layla form got up with him and made him breakfast. She's so beautiful to him and he just adores her.

On sunday after we had to turn around from going to the party we stopped off at a local park on the way home. at the park Luke decided to jump of the playgrounds climbing frame and landed on his ankle the wrong way. He hasn't been able to walk on it since. Poor little man. plenty of TLC needed for him as well. We went to the doctors today to get it checked out and he is now on crutches as he has a sprained ankle. Boys!

Looking forward to sleep tonight and hoping it comes easily.
My little man is sleeping soundly now. Can hear his little tummy still churning so don't think we are at the end of this virus yet. Hope we will be soon.




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Friday, 2 August 2013

A word to my mum

Last night

Can't sleep. So wired, anxious. Nightmare.
Trying to focus, just so hard.

Feeling like some time out with my family is what I need. Some real time out.

That's when I'm my happiest.

Today

I wasn't able to sleep last night and went to the kitchen to read a woman's magazine in the hope that reading about some super stars trivial life would take my mind of things. I found myself really stressed instead and began to write it down but not long after
I wrote those words in this blog last night , I heard Jayden screaming. I raced to the bedroom to find him so very upset. Crying, scared, nightmare I thought. As I cuddled him though I noticed he was really hot so we took his temperature and it was 38.9, high. We gave him some paracetamol and I snuggled up to him in bed until he fell back asleep. He had a restless night and I was forever checking his temp worried because it took so long to come down then worried it would come back up again.

The episode when he woke crying really worried me as at the time he was behaving like he could see something frightening that wasn't there. I hope this is simply a night terror that was brought on my a high temperature. But I can't help but worry.

This morning I woke to the sound of Luke reading a book to Jayden. Beautiful. Jayden was much happier and you would never know he was sick like he was last night. But as the day progressed it was obvious he was not himself. Around lunch time he was starting to decline which was exactly how it worked yesterday and no matter what I did to try and get him to have a nap it just wasn't happening. He made it to the evening though without another temp and is now sleeping soundly.

He's had barely anything to eat all day and that's really got me worried too. In fact the last few days have been like that and I honestly don't know how he is surviving.

Today was another tricky day for me and with Jayden unwell it meant for total focus on him as he didn't want anyone else but me. But by late afternoon I knew i needed to get out and was able to whizz out for a quick walk. Jayden wasn't in good form, Luke was upset he couldn't come and I almost didn't go just because it was easier to stay. I did go but 20 metres away from the house and I nearly turned back. In fact for the first five minutes I contemplated making it short and going home. I was just so worried about leaving the kids, especially Jayden. Even though they were with danny i knew he was also tired and jayden just wants me at the moment. I didn't turn around though, I made myself keep going, I knew I had to.

I walked the same route my mum and I use to walk every night when she was alive and As I walked I thought of her. Of the conversation we would have if she were here today and what she would say to me. I often wonder what advice she would give me and didn't think I knew but today for some reason I just knew what she would say, as if she really were with me.

Part of the route that we use to walk includes a big hill and half way up there's a bench that faces a beautiful view of the river. When I got to this spot I remembered the very last time mum and I walked together. She had been in remission and was just starting to come good but on this day as we got to this part of the walk she told me she was really tired and just didn't feel like she could keep walking. We stopped, at this spot. I stood there next to her as she caught her breath and knew that something wasn't right. I could feel it from her. we continued home but she struggled, and that was to be the last time we ever walked together.

Today I stopped at that spot. Remembered that time and remembered my mum. I sat on the bench, put my face in my hands and for the first time in a very long time, I spoke to her. I asked her to help me, guide me, show me how to cope with this journey. Point me in the right direction. "Please mum show me how I find some peace in my life now."

Afterwards i sat there and looked out at the river. I didn't feel weird after talking to what appeared to be nobody, it actually felt normal.

Deep breath in and I continued the walk up the rest of the hill, all the while thinking of mum. For the first time in ages I truly felt she was with me and it felt good. It made me feel stronger and by the time I got home I felt better. Better than I have felt in some time. Whether it was the exercise or the feeling that she was with me, I don't know, but it felt good.

Later that night when I was putting Jayden to bed and he went into one of his tantrums there was a small moment where I felt like I was going to get upset and it was as if a hand rested on my shoulder and I just Relaxed. I calmed and handled it just as I always want to handle it, with love and compassion.

Thank you mum.




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Thursday, 1 August 2013

I don't think I've ever found parenting easy and with the stress of this journey it's no doubt even harder. lately I've certainly been struggling way more than normal. Jayden was in really bad form this afternoon and I know it was because he was tired but after quite sometime of it my patience was beginning to run thinner. Danny was coping even less and amongst the mess of it all we fought with each other.

I feel like my coping mechanisms
are at an all time low and that i am in desperate need of doing something to recharge as whatever I'm doing right now is simply not working, at all.

I hate that I feel my stress levels are high most of the time and can skyrocket even higher in a short space of time. That one minute I'm managing splendidly, although inside I know I'm not, but on the outside that's how Its perceived and the next I've lost the plot and the facade comes crumbling down. I'm ready to pull my hair out and I desperately want to hand it over to someone else for a while. My whole life in fact. Just for an hour, half a day, anything.

I get so fed up that I can't keep it together for any real length of time. That I wake up thinking "yep, I got this, I'm going to get through this" and by the afternoon I'm either in tears, yelling at someone or quietly stressing within."

I'm definitely having a crappy few days. Struggling with my frustrations and anger in particular. Grumpy with everything lately and just want to scream from the top of my roof until I have no voice left. I yelled at danny today, used some choice (vulgar) words and I think the whole neighbourhood including the local school heard. At the time I didn't care as I was so damn frustrated but now looking back I'm mortified. Mortified that I'm snapping so easily lately. That I can't seem to keep my cool and now everyone is wearing it. And mortified that the entire neighbourhood heard. And even more mortified that I can't seem to use words that aren't vulgar when I'm super angry.

I just wish for a decent amount of time I could keep it together. Be somewhat normal instead of continually riding this roller coaster. Honestly sometimes I feel like I'm going crazy.

Jayden was meant to do some testing today and we didn't do that. Danny doesn't want to put him through it as he thinks he's 'fine' and I was too tired from an awful night sleep but in hindsite we probably should have gone. theres no hurry to do it but i guess it would be good to just get it out of the wAy sooner rather than later. and maybe if we had off i wouldn't have spent today worrying about it in the back of my mind along with everything else. i just dont know.

i do know that days like today are just plain hard and I'm just so over feeling so damn stressed, anxious and crappy. I know I have to do something, something to recharge.

Mindful meditation is what I am going to look into but haven't had a chance to yet. It's on my list of things to do. I keep saying I'm going to do something for myself but keep avoiding it. Every time I think of something I come up short because it means I have to leave Jayden with someone and thats the very tricky bit.

But if I don't pull my finger out soon my neighbours are going to be selling their houses and moving and that's not a good thing.


Not all the day was crap however but the bad bits always seem to stand out the most and lets face it its difficult to forget making an idiot of myself in my front yard yelling. Can't seem to let that go in my head.

What was good today was I spent the morning with a wonderful friend and Jayden and then a very special friend from down south came to see me with her beautiful boy at lunchtime. Jayden and her son got on wonderfully and it was really lovely to see her. After she left however it all went pair shaped but I'm not going to write about that anymore. afterwards I picked up Layla from Funtracks and then Jayden, her and I had a milkshake at the local cafe. Really nice. Nice to just sit down and stop and at the end of the day- that's what I needed to do. All day I just needed to 'stop'. Stop worrying, stop stressing, stop trying to get everything right and just... Breathe.
Really need to learn to do that.




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