Death & a five year old.

(Please note: if you are reading this blog for the first time, you need to start with the post entitled " The reason" which can be found in the 2011 Archive)


Lily:


How do you tell your child that her father is dying?
The sentence itself is weighty. Standing alone it speaks volumes. It hangs around my neck like the albatross to the mariner. In truth when I started taking Arwyn to the child psychologist (Mrs M), I think my selfish aim was to have Mrs M do it for me. It was the whole reason why I was paying her - she could take that responsibility from me thereby making my life easier.
But she didn't tell Arwyn - we did.
Going to Mrs M is probably the best thing I have done throughout this chapter of our lives because it allowed me to discuss with someone who wasn't connected to us emotionally, and put forth what I was going to say for review. Mrs M could let me know if I was saying the right thing or not. Guide me as I guided Arwyn. 


Arwyn is the perfect daughter. I know, bias right because I am her mother. But you have no idea how wonderful she truly is. How understanding she has been throughout this. How compassionate and loving towards her father. We have asked a great deal of her throughout all of this and all she has asked for in return is our love. The reassurance that everything is going to be okay. 


We sat her down in the lounge room and brought it back to a context she would understand - our previous cat "Arch" who had died. Arwyn knew that her father was sick, knew that the sickness was called cancer yet didn't know what cancer was. We explained that soon, daddy would get sicker and die and that she and I would never see him again, " Not even on birthdays?", Not even on birthdays darling. "But what will happen to all his Christmas presents?" He won't get Christmas presents. "Ohhh Daddy." To which she hugs J.J. Not a moment later she has jumped off his lap and asked ' Mummy, let's go out and play." With a big smile on her face. We explain to her further the implications of J.J's death, the details not necessary yet we decide on utilising the idea of heaven as an idea for her to get attached too. Mrs M has concurred that children cope better when they do have something to hope for, and the hope that Arwyn will carry with her that one day she will get to see her father in Heaven is not a bad idea; hope is never a bad thing.


Once Arwyn and I discuss the idea of Heaven further while in the backyard playing, her little five year old mind starts with the questions.
Are there waterslides in Heaven?
How do you eat in Heaven?
What if you get thirsty?
Where do you sleep?
Can we visit Daddy?
You smile, you laugh and your heart breaks a little...

J.J.
It was a rough day, we'd decided that the time had come to tell Arwyn that I was going to die. I don't know what the catalyst was that prompted us, it was most likely the arrival of the palliative care equipment at home - wheelchair, wheelie walker, hospital bed etc. We sat her down and asked some questions, about me being sick, not getting better, what was wrong with me, etc. When we asked her what cancer was she responded with saying it was something in my arm and head. At which point she bent forward and gave me a kiss on the forehead.
*Fuck*
As if this wasn't gut wrenching enough, she's got to be her compassionate, caring, loving self. Now, I need a moment to compose myself, so Lily takes over for a bit.
We explain about Arch, we explain about heaven - thankfully her school has already talked about heaven, making it a bit easier, we just needed to tell her that there are differences in heaven. Her only concept so far being what had come from her catholic school.
Then came the questions about heaven over the next few days, just as Lily explained above.

It's now a few weeks later, the days are now measured in good, average, poor and bad. The good days are fewer than they were, its now a toss up between average and poor, poor and average, with bad ones sneaking in. This morning was a bad one - a lot of pain, pain that I couldn't hide or mask- vocal, verbal, visual. It frightened her, I'm certain of it. After the pain killers have settled in and I'm composed, it's time to set her down and have another chat.

I sit her down on the wheelie walker, and we talk about me dying, going to heaven, that she shouldn't be scared, and that I'll need plenty of hugs and kisses to help me feel better and get through. Well, the selfish ploy worked and I got hugs and kisses a plenty as well as an improvised story of Rapunzel.

However, it has made me reconsider how long I will be able to stay at home. I truly want to be at home until the very end, but I don't want to traumatize our little princess. I don't want her memories to be of me writhing in pain - moaning, swearing, agonising or aggressive.
I don't want Lily to see me that way either, it's not easy to explain death to a five year old, its even harder to explain it to an adult, and to myself. As I keep saying, everyday I finish still breathing is a good one, and as the family we are, we'll keep taking them as they come.

Auto-pilot

(Please note: if you are reading this blog for the first time, you need to start with the post entitled " The reason" which can be found in the 2011 Archive)

I have ceased to exist...and I feel nothing. Auto-pilot. There is no better apt description than that to explain who and what I am. Everything is without thinking, without feeling. Something needs to be done and I will do it. J.J needs help getting out of bed and my covers are thrown back, the lack of sleep instantly forgotten and I am there for him. Arwyn will need help getting ready for her day and once J.J is settled, my attention is immediately transferred to her. At times it is a tug of war between the two. And it will never be a fight of whose needs are greater for both will be taken care of, everything will get done. I move from one to the other, back and forth, back and forth. Auto-pilot.
J.J's needs have increased, his pain has increased and he is vocal in expressing his pain (a natural occurrence). I'll move from room to room attending to his needs, getting his pills, assisting as needed:- mother auto-pilot will also take over as I shield Arwyn from as much of her father's pain as I can. 
Thought ceases, muscle memory takes over. To the fridge, take out the margarine and spread for toast, Vegemite for her, marmalade for him. She'll want a drink, don't forget that. He needs water, orange juice, medication - toast down, banana for her, sausage for him. Cats meow for their food, ignore for the moment then feed once Dr Seuss lays on her back in front of my feet looking cute and adorable. Television on, heat pads for J.J's back in microwave. Sit down at computer for three minutes, remove heat pads, apply to his back. He'll moan slightly, I'll look at him to see if it is something I can assist with. Shower, he needs the relief of a shower. Assist with walking, moving to the back room, down the step, into the shower. Remove clothes, run water, check temperature, he's all good now, I can go. 


I don't know where I am anymore, I don't know who am I, except I am theirs.
The days continue like this, they become white noise as memories fade of them, for it's the same day after day.
"Lil / Mummy can I have...."
"As you wish".