Friday, 24 April 2015

Home schooling

I look back on my entry's these past couple of months about jayden and kindy and I read how up and down I am. It stands out to me that some days are ok and others are just plain crap. And that's actually it. That is how it is. when jayden had his first day at kindy it was great. But by the third it was not, far from it. So I changed his kindy and at first it was great, then it wasn't. Both of us were trying to do something that's considered normal yet realising we aren't normal and to fit us into the normal mode just isn't going to work.

In fact this whole kindy thing has been way more difficult than I had anticipated and emotionally it has taken a very real toll. Both of us struggling to do something that is normal but our situation just isn't normal..

On top of this his brother seems to miss out entirely of anytime with me and I forever feel torn between the three and feeling as if none of them get as much of me as they deserve to or I of them.

So after much thought for sometime and particularly as the school holidays ended I realised I just couldn't keep going like this. So I did some investigation and sent a few emails off and come Monday the first day of school back I kept my boys home. Because I made the decision to home school them. Layla had the option too but she wanted to go back to school which I'm so proud of her and I'm also so happy to be able to give her options. Luke of course was wrapped he was not going back and jayden just loves being with Luke. It was a huge step to make and a little scarey but it just felt right and so I went with that feeling.

It's been a week now and it's going great. I can honestly say I feel as if a weight has been lifted off my shoulders.

In these past few days I've smiled more and laughed more than I can ever remember. Being with my boys and being their teacher and mum is truly the best job in the whole world. Loving this time!




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Thursday, 16 April 2015

It's Thursday evening and Jaydens asleep. He hasn't been well. Wednesday morning was the first sign things weren't right as I wrote in my last blog, but by lunchtime he seemed to turn a corner and all was well so he went with danny and the kids to see family.

But when they came home and danny was carrying him in his arms, asleep, I began To panic. A million unanswered questions rushing through my head....Why had he fallen asleep? What was wrong? He never falls asleep in the car anymore. What was making him so tired? I'm never thinking of simple answers to these questions like maybe he's just under the weather or just plain tired. No, I'm always thinking the most scariest scenario and It terrifies me.

We laid him on the couch and I sat with him watching him. He was awake by now but looking really pale. "My eyes hurt" he says. The panic begins to erupt inside me. I stroke his head," it's going to be ok, I love you". "I love you too" he's says. "My leg hurts mummy", more panic. I ask him if anything else does and he tells me everything hurts. All the while I'm trying to convince myself it's nothing major and when he tells me his whole body hurts I'm hoping it's just the flu. I also feel that he's warm and check his temperature, which thankfully turns out to be high. I catch myself in these thoughts and can't beleive how now I actually hope that my child has just a flu, because what I fear is far, far worse than the flu.

He didn't leave the couch until it was bedtime and we sat with him and had dinner with him in the lounge room. He didn't eat much but had a little bit of salad.

The next day which is today he seemed ok in the morning but congested so I rang the specialist who would be performing jaydens procedure tomorrow. Fortunately he agreed with me to postpone the procedure and he's booked in for late May. A little (maybe big) part of me was relieved to have it postponed. Nice to have just one less thing to worry about for now.

It's really late in the evening now and he's having a very restless sleep. He's just woken and saying he's cold and his temperAture is really low. Again I'm getting myself caught up in worse case scenarios because worse case scenarios is what I know now. I can't sleep worrying about him, and am so concerned.


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Wednesday 15th April

Images and memories of Jaydens treatment will always haunt me. Especially At times when I'm on my own in my headspace. In bed at night, taking a shower, vacuuming, washing the dishes, the times my head isn't busy. The images appear. Today whilst showering a flash of jayden after he had yet another procedure. Danny and I going into the recovery room and seeing him laying in a hospital cot crying, so frightened. His face all blown up from the excess fluids. His little face all wet covered in tears. Oh my god, the sadness and gut wrenching hurt I felt for him. And my urgency to hold him and take him out of there. to stop everything that was happening to him.What I wouldn't have done to change everything for him.
The images and memories ramp up as the next MRI approaches and the fear is overwhelming.

His procedure this Friday is really worrying me as well. The thought of putting him through something else hurts so bad. I know if it were Luke or Layla I would be worried too and nervous but with Jayden it's far more than that. It's wanting so desperately to protect him from anymore hurt in his life, it's the rehashing of all the hospital experiences we have had with him and the fear and anxiety that comes with that. It's like having a burn and whenever that scar goes near heat again it hurts.

I'm so worried about it all. He's unwell today which has amped my concerns up even more. Nothing specific but just wanting to be laying on the couch and me to be right near him. I know something is up. He has no temperature but I know something's wrong. And it's the not knowing of what exactly it is that's terrifying.

I just love my little man so much and I hate that I can't protect him from every thing. I so badly want him to be safe, always and forever. All my kids.


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Easter, new puppy and school holidays

Monday 13th April

It's the start of the second week of the school holidays and I so wish it were the first again.
Easter was really lovely, the kids were so excited. So nice to be all together. I will never stop being grateful for that.

When I set up the easter hunt I remembered the Easter jayden wasn't here but instead in hospital. Only one of us could stay and The other be home.
I remember the kids being excited but not one piece of me could be excited with them. It's those memories that are a constant reminder to be so grateful for today, and I so am.

Jayden has been well and happy. I'm always obsessed about his well being and stress so much when he's hurt or sick in any shape or form. If it's a normal boy thing like a simple fall or trip and graze on a knee or splinter in the finger, I'm worried but also grateful that he is able to do normal boy things. But if he's pushed by someone else or he's crying and I don't know why, I'm totally beside myself. I'm not even sure what I'm trying to explain exactly except that sometimes I know my emotional reaction to these things is intense. I wind up crying later in a room on my own because the experience hit such raw nerves of not being able to protect him, that keeping it together in the moment is so hard.

Feeling very fragile today. We have had an awesome start to the holidays and I'm so grateful for that. But I can't help but feel extremely emotional about jaydens upcoming procedure and most of all, his MRI. It truly never gets easier.

I'm not going to focus on those emotions though and instead post some photos of the wonderful time we've had together over the holidays, easter and our beautiful new edition to the family, jaydens little puppy he named "coco".

























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Thursday, 2 April 2015

Croup, kindy and circumcision.

It's Monday and Jayden is doing well. He didn't have a good week last week with croup but fortunately this week he is feeling much better.

Kindy has been ok but with a few setbacks ......
Two weeks ago he stayed home from kindy quite a bit as he wasn't happy. In fact kindy has been trickier than we originally anticipated.

In the beginning it wasn't too bad especially after we changed kindies. But then it turned, and one day when I went to drop him off his little face crumbled and pleaded for me to take him home with me. Of course I did. When he cries for something to stop I don't see a boy missing his mum but rather the little boy that lay in a hospital bed pleading for yet another procedure to stop. And in this instance, I can make it stop, so I did. We went home that day and just hung out together.

The following day we missed as well as he didn't want to go and I realised then that we needed to take a new approach. As much as I would love to keep him home always and any opportunity I have I do, but I also know how much playing with kids his own age makes him so happy.

So I went Back in to see a psychologist that is wonderful and sorted a plan to go with for what to do next. Fortunately the kindy is wonderfully supportive and is happy for me to stay. So now, everyday I go with him, stay, pop out for a coffee and come back and leave when he's ready. All this so that when we are both ready jayden can stay on his own. I have to say it's so difficult to let him go. I worry about him constantly and although he and I were both so brave in the beginning with kindy, when it came down to it, we both just crumbled. I know it's not just about him but also me. I don't have one single bit of emotional energy left to make him do anything he doesn't want to do. I just can't. It's impossible. So hopefully this method which we also used at happy campers will work as well at kindy for both of us.

Jayden and I are both enjoying kindy much more now. He is, knowing I'm not far away and I'm loving watching him happy and interacting with other children his own age. Really awesome to see.

He wasn't well last week with yet another bout of croup. Truly scary stuff. It's also so emotional for all of us. We all worry so much when jayden is unwell and none of us like to see him distressed. His brother was especially worried the night it started and sat up with me helping in anyway he could to help make jayden comfortable. Luke was really just beautiful. He loves his brother so much and jayden loves him back.



It's so hard to see Jayden distressed. When I'm holding him in my arms like I was the night his croup started and wishing the steroids we gave him would hurry up and kick in, he's crying and pleading with me to do something. It's times like these my heart truly breaks. I hurt inside so bad and I'm so scared. I know the croup will pass but my fear of the future is so overwhelming. I wish so much that I had a magic wand and use it to make sure he's never ever sick again. That he grows to be a healthy, happy adult. I so wish for that. More than anything. That all my children remain well and happy.




Jayden has yet another procedure planned in a fortnight. He has to be circumsized. We really didn't want to do this but we have got to a point where the positives by doing it far out way those reasons not to. And of course one of our main reasons not to is just not having to put him through another procedure. However we know it has to be done. So why is he being circumsized? Well, When he was going through treatment, part of his protocol was to have a catheter inserted into his penis at the beginning of each chemotherapy round. The reason for this was if he wees it will prevent the chemotherapy from burning his skin. All shocking. And he was so young at the time. Because he was so young his foreskin should have never been pulled back to insert the catheter but it was, which tore the skin and caused scarring. This happened each time and our specialist believes this is why he now has issues with his penis. The scarring has prevented the foreskin from opening properly and everytime he wees it blows up like a balloon. he only has a tiny gap where the wee can come out. I thought This would be ok with time however it can cause infections that can become serious.

I wanted to write about this so that if their are any parents out there that have little ones in treatment, make sure the medical staff know how to insert a catheter correctly in a small child. Their foreskin should never ever be forced back. I know there is already enough to worry about after treatment so you really don't want to add to that list. I wish we had of known that back then.

Anyway, it's nearly the end of the school term and I'm so happy to know my kids will be home everyday soon. Love the school holidays.









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It's now Thursday, last day of the term. Love the school holidays.

It's 1:30 in the morning so that means it's actually Friday. I can't sleep. Jayden woke me as he's sleeping very restlessly tonight and when he does, I find myself laying awake worrying why he's so restless. While I worry about him, visions of the past enter my head and before long I'm in an awful state of panic. So I'm up now in the kitchen finishing this blog in the hope that I can switch my mind off. Not likely, but by writing my thoughts down at least they are in some form, out.

We received the letter from PMH today letting us know when jaydens next MRI is. The gnawing feeling in my gut returns and I'm scared out of my wits once again. It's not that it stops it's just that I've become good at burying it within myself and this letter just made it all come rushing up.

Then tonight. Restless sleeping and I'm worried. It's So hard not to be scared. Wish I could sleep.

I'm going to finish this now as I need to try again for sleep.

Hoping and praying everything is ok with Jayden, and always will be. Love my little man.