Discovery

Thanks so much everyone for all your lovely comments on my friend C's post, it is very appreciated.
You all rock.

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Bubbaboo and I discovered a new park not very far from home, right by the river. Actually Max and I had been there once before but sans children we didn't really appreciate what it had to offer. Yesterday we had a gorgoeus warm Winters day although very windy it was still screaming at us to get out in the sun. The park has a huge sandpit , a play area and water slide and a splash pool. I can't wait for the weather to warm up so I can take Bubbaboo for a  real splash instead of just dunking his toes in. He loved it, he had his first real tantrum when we had to leave the park. I love that he loves the outdoors, that makes me so happy. He is learning and discovering so much, he just takes everything in and doesn't miss anything either. I love the way he studies things, simple things like picking up a dry leaf in the sand pit and brings it close to him, feels it, scrunches it, turns it left, turn it right till he is satisfied then he tosses it! He loves throwing things. He hasn't been in sand since he was 3 months old so he wouldn't remember it, so sand was very new to him. The grains of sand through his fingers and toes, he loved it.

I have heaps to say but I am feeling so tired at the moment. Emotionally and physically. I have a few big decisions to make which I am struggling with but I have too much happening in the next week or so, I have just had to brush the decision making aside. One of things happening is that my boy will be turning one! I just can't believe it. Firstly that I , ME, I have a son and secondly he will one!

Here are some pics of our day at the park with the my beautiful boy.

His Last Days - Saturday 8th May 2010

You can read about the day before here His Last Days - Friday 7th May 2010

Since I have been having trouble gathering my thoughts and getting this day out in writing. I asked my friend C to write her story and to be a guest blogger on my blog, C was there with me that night. I wish she wasn't so she didn't have to witness this but I am so grateful that she was there or I would have been alone. She helped me make difficult decisions that night and I can't thank her enough. She accepted to write her thoughts and she felt it was good for her to get it out too. C has written it beautifully. I am hoping now that this day is out, I can get on with writing the following days.


Please give C the support you have shown me, because this was a difficult time for her also.

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That Saturday night as I drove the 20mins from my home to see Vee and Max the tears did not stop. I had to pull myself together before I unloaded the car as I was there to cheer them both along. The weekend before I saw with my own eyes that the time was nearing closer.  Max was so weak, so ill, so frail, at a point of no return. He was utterly miserable. He told me he was shit, smelt like shit, and looked like shit. The strain on Vee’s face was clear...I worried for the entire week how she was coping, and whether they had discussed where Max would die. It was the practicalities of dying that was at the forefront of my mind. Had they had the right conversations? How would Vee cope with those last few days, those last few hours- in her home? I wrote to Vee during the week and urged her to finalise the details. I felt like crap trying to make this point with her...in retrospect I’m glad I took the risk for the sake of my friend.

During the week proceeding Max’s death Vee asked if I could try to get a plate of Max’s favourite mussels from a belgian beer cafe as a treat for him.  I went and spoke to the manager and explained the difficulty of the situation, the tragedy really, and it was agreed that they would prepare the ingredients and I could cook for Max in his own home. On that Saturday the chef gave me a lesson- they were so sweet, they had packed everything into little containers, made the broth, even chopped the coriander and garlic.

Max never got to eat that last meal. It still makes me so sad. He seemed genuinely excited when I showed him the black pot and told him that we’d be eating his favourite mussels soon. I don’t know where he found the energy to be cheered- even if it was for only a few seconds. When I arrived Vee looked stressed. Max may have been overmedicated. He was out of it. Agitated. Uncomfortable. And in a lot of pain. It would be a couple of hours before the palliative care nurses would arrive. Meanwhile I hovered in the hallway as Vee shifted and shuffled poor Max. This way, that way. Each movement agony. I cowered in the lounge room, shivering with anxiety and stress as each yelp tore my heart apart and I urged it all to be over. I could hear Vee and Max through the intercom. I felt like I was intruding, but I couldn’t stop listening to the agony in Max’s voice. It shocked me. How, how could the body still be alive when he was clearly so deliberately dying? Let go Max I willed...I just want you to be free from this pain. You don’t deserve it. Just fucking let go I wanted to scream at him.

And so we waited and waited. Max was not his normal self. He was ...already gone. He struggled with each cough. His breath shallow. He barked at Vee and that broke my heart for her...I wanted to slap him...but he was so unwell, his brain shutting down. But we didn’t know that then. That’s what it looks like when you are dying. They don’t tell you that. They don’t show you pictures of that. You are clueless.

Max’s frailty is still etched in my hands. Skin and bones. Lumps. Broken bones. No hair. Sunken eyes. Dry cracked lips. Teeth protruding. What did it do to you Max? It stripped you piece by piece. I will never forget the feel of you in my hands. I owe it to you. That photo Vee posted says it all.

After a good amount of time getting Max ‘comfortable’ the palliative nurses sat us down and basically said...he’s dying. Now. Tonight. Any minute. I watched in slow motion as Vee’s face crumpled and the world stopped as the grief took over and their words rang in our ears.  Max’s platelets were no longer pooling. I knew what that meant. Internal haemorrhage possible. I understood. Where will he die? I knew that conversation. Not here. Somewhere else. Vee sobbed and sobbed. It was achingingly primal. I shook and shook. This surprised me. It was such an intense physical reaction. The time was now. After all this time, the time was now. We negotiated minute details with the nurses hoping for a reprieve. There were none. In desperation I asked, but what if he stops breathing. (Finally- my fear rose up!) And the nurses looked at me and said, well, just let it happen. Fuck.

Vee and I then did what any rational woman would do in a situation like this. We ate left over chicken schnitzel from the fridge. Life goes on you know...even if someone is dying in the next room. That is the ridiculousness of life. It’s sad and comedic in one split second.
Bit like an hour later when Vee’s family had congregated and all 6 of us went into the kitchen to make a cup of tea. Because it takes 6 people to boil the kettle. It was safer to stay in a group.That soothing, life-affirming cup of tea that shows you that everything will go on.

Max came out to sit with us all for a few short moments. He could barely stay upright. That would be the final family moment. The last time he’d be chatting with his guests. He remained a polite host- despite his frustration with us all.  We kept talking for him...his speech was slow. We talked rubbish really- no one had given us instructions on “Conversations One Has With a Dying Person”.
I had this urge to play a Tibetan chant for Max, one that comforts me on my dark days. I thought maybe the soothing chant will help him let go. Not be afraid. It will soothe his soul. I had to say goodbye to Max. I hovered for over an hour making excuses as to why I couldn’t go. It really would be the last time I would be with him. I kissed his hot forehead. I said- Max, I’m going now. I’m so sorry we couldn’t eat those mussels. Next time. We’ll do it another time Max.   
Yes, he said. Thank you C. Thank you.

I left Vee knowing that the darkest moments of her life were upon her and the Max’s life would soon end. I wished for it to be quick- it was agonising for everyone. There was no peace, no serenity like the scenes from a movie. Just pain, fear, sadness and deep regret.
My only regret was that I didn’t speak up sooner Vee- and encouraged you to get Max into a palliative care place where his pain could be managed, his aches soothed, and you could spend those last few days comforting him, holding him, talking to him and being his wife. This may have alleviated your regrets my friend, the guilt you feel now. Being a full time nurse got in the way- although he loved you more for it. Of that I am sure.

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Thank you so much my friend x

The Image I Can't Get Out of My Head.

WARNING**** There is a photo of Max during his last days which you may find offensive please do not scroll down past the line of asterisk at the bottom if you do not want to see it. 

"I keep wondering when the bad day memories will fade away and the best day memories will rise to the top of my mind. I’m not there yet."
Calliope wrote this about her Grandmother who has passed away and when I read it they were my thoughts exactly. Please go and send her a hug.

It has been 3 months since Max passed away. I am struggling with this image of him at the Palliative care hospital. Him struggling for every breath, being so agitated and disorientated he was like some stranger I never knew. His body was just skin and bones and cancer bumps. I want these images to fade, but they are not.

I took a photo of Max during his last days, in fact it was on the Sunday, Mothers Day here in Aus. I was really hesitant about taking it. But I knew his brother would want to see him and being on the other side of the world the only way he could be close was if I sent him a photo. I asked him first of course and he wanted to see his brother, so I took the photo with my phone and sent it to him.

I have also been hesitant about posting this photo on my blog, but after much thought I decided I needed to share it. Because I need you to know what I am seeing and what is constantly in my thoughts and maybe help me get beyond it. I have been doing a lot of crying lately, sobbing uncontrollable tears.

Please do not read any further if you do not wish to see it.


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I miss him so much. Why did he have to go ?

His Wonky Head

Bubbaboo CT scan results came back and all is fine, there is no fusion. Basically this specialist is saying just to leave it and his head should take shape, however it will never be perfect. His flat head is quite severe even the specialist said it was the worst case he had seen all year. I am not really happy with that. He didn't suggest any physio or any other options. I am concerned that Bubbaboo is going to have to deal with the stigma of a "wonky head" for the rest of his life.
I hadn't been too concerned before but something happened recently which made me think it could be worse. Bubbaboo is going to have enough things to deal with when he gets older, he doesn't need to be given a hard time because of the strange shape of his head.

We were at the park a couple of weeks ago playing on the play equipment and I was taking photos of him playing. There were two little girls about 8 or 9 hanging out on the equipment they were watching me take pics. Then one went off to play and the other continued to watch us. On the return of the friend the girl that had continued to watch said to the other." I know what's wrong with him he has a wonky head" Of course I pretended I didn't hear but I just wanted to cry. My poor little boy, that will be what he will have to deal with. People are already commenting and I am sure there are those that think there is something wrong with him but don't actually say anything. And I know kids can be really cruel. I remember being called Fatso or Big boobs at school and it scarred me, my confidence level was zero. I struggled with my self esteem right into my young adult life. I don't want that for him if I can avoid it.

So at this stage I am thinking of getting another opinion. I want to be able to tell Bubbaboo when he gets older that I did everything  possible and know in my heart that I made the right decision and had all the possible options layed out in front of me, even if there are no options. I don't want him to come to me and say Mum why didn't you do this or that or whatever and hate me for it.
 

Bubble Bath

It's All Too Familiar.

My Mum is not doing very well. She is deteriorating fast. I feel like I am watching Max all over again, all the signs are there. She has become very breathless, she has become less mobile, she has become very tired, she has lost her appetite, she has lost lots of weight all the signs that that her cancer is starting to beat her.

After seeing the specialist it was decided that she will not be getting any more therapy, radio or chemo. Her lung has partially collapsed and a stent will be inserted into her good lung to avoid the cancer from spreading and closing her airways. Her cancer has decided to grow quickly it has been dormant for so long and has now decided to wake. She really is a remarkable woman and I am so proud that she is my Mum. All the Dr's are amazed at her and the way she keeps fighting. After picking up some scripts for yesterday I was chatting to the pharmacists and he too is amazed at her strength after I explained to him that things had changed recently.

I have never seen my Mum so emotional. She is always teary. Max's death was close to home for her, she saw what she too will go through and she is struggling with it. My Mum gave Max so much strength, she wouldn't let him feel bad and kept telling him to be strong like she was. She gave him so much love like he was her own son. She kissed him and gave him hugs like a mother. Now he is gone she no longer needs to be his mentor, she is letting go. When someone asks how she is, she now tells it how it is. She no longer puts on her brave face for others, she is being honest. I remember when Max got to that point also. He felt like people needed to know the truth, not some bullshit just to make them feel better.

I am making a point of spending more time with my Mum and Dad, they need the help at home and Bubbaboo always makes them both happy. I bought them lunch yesterday and cooked them a nice dinner which she can freeze for those days when she isn't up to cooking. My Dad isn't coping either, he is getting old and he is not accepting that my my mother is dying. Actually I don't think that he has ever accepted that my mother is sick. Yesterday he told me through tears that he wanted to die before my Mum. I know he wont cope when she is gone. Sigh...

Last Friday my sister, Bubbaboo and I took Mum to her first Palliative care appointment. It was all so familiar. I know I will probably never be ready for this, but I am REALLY not ready for this.
Fuck I hate Cancer!

My Munchkin- update

Bubbaboo scan went as well as expected, although I don't have the results yet. He was tired and starving and really upset. He was meant fast from 7-3pm he woke at 5.30am so I gave him his bottle, he went back to sleep and I had to wake him at 6.30 to give him his breakfast but he wasn't interested at that time of the morning.  So his last feed was at 5.30am. The childrens hospital really should reschedule the times of these scans for little ones, it makes more sense for them to have it done first thing in the morning.

They allowed me to go in with him whilst they gave him happy gas before hey gave him the anesthetic. It was so horrible to watch my boy go through that. The actually procedure didn't take long and he was awake and screaming after 20 minutes. The nurse told me it was normal for him to react that way and I believed her because I had just witnessed a little girl a week older than Bubbaboo coming out doing the same thing. Poor little Munchkins.

It was a really long day for all of us. Bubbaboo fell asleep in his pram whilst we waited out to make sure he wasn't going to have a reaction to the GA, but he was fine. He had half a bottle nice he settled down. So we came home I gave him a bottle, put him in his pj's on gave hm lots of cuddles and then straight to bed. He slept through the night, he hadn't done that for weeks. And he was fine all day yesterday and even slept through last night, so maybe the GA has shocked him back into his routine. He is really enjoying his sleep at the moment but I wont say that too loudly.

My Munchkin

Gosh so much is happening at the moment and I am frustrated that I can't sit at the computer for very long to write because of this stupid arm. I need to blog! I saw my Osteopath again today hopefully it will improve, it has improved a little but still quite sore.

So another quick post.

Bubbaboo is going to have a CT scan of his skull tomorrow under a general anesthetic to check out his flat head (Plagiocephaly), I am nervous for my munchkin. They need to make sure that his skull plates haven't fused together to allow for his brain to grow. I had to take him to the GP today to rule out any chest problems because he has had that stuffy/runny nose for almost 6 weeks now. We now think it may be an allergy I just need to find out what the allergy is from now. He got the go ahead from the GP so he is ok to have the anesthetic. We see the specialist on Friday with the results of the CT scan.

I am not looking forward to have him fast from 7am till 3pm, poor thing is going to be so hungry. I will have to try and keep him really occupied during that time.

Wish us luck!

She Said Lets Eat Cake!

So we did, in celebration of Friday Blog Roundup's 300th 200th post.

That is what I love about the ALI community. Where can you share cake with like minded people from around the globe, who support you through the good and the bad. I know I could not have got through the past few years without you all. I am typing with a very painful arm just so I can enjoy cake with you, that is how much you mean to me. I love reading posts where I nod my head and feel like I could have written the exact same thing, only you have written it a whole lot better than I could have. Even though my family making is over and my life has taken a completely different road, I still feel connected and I appreciate that the community that are still on the road are still around to support me.
Thank you and a huge thank you to Mel, who rounds us all up and brings this great community together. Bear hugs to all.

I must admit I didn't actually eat these but they were bright and fun to look at in the Donut shop window.

Chocolate Donuts with Crocodiles or are they Alligators?

Enjoy your cakes!

I Just Want To Share.

One of my favourite photos of Max and I, snorkeling the Great Barrier Reef. A wonderful experience we shared together.

In Brief.

A really brief post to say.....
I have a really sore arm actually it is unbearably painful and typing is extremely uncomfortable and doing it with one hand is no fun. No pain drugs are working for it.
Sore arm started from lifting Max, and now a 12 kg Bubbaboo and it has just got worse and worse with no respite. Could also be delayed pain from the Shingles.

I have lots to say but it will have to wait.
But I am still here, so come and say hi because I am lonely.